LYME & THEIR CO-INFECTIONS

Hormone Advice for Lymies on Facebook

2011-06-02T12:34:00.000-07:00

I have a Facebook page for hormone advice specifically for Lymies. Just search, "The Natural Hormone Makeover," on Facebook and you'll see it. Its become quite popular- hope it helps you hormonally challenged, multiply infected people. My book, (same title) is helpful for Lymies since most of us lack pituitary function.

Recovery

2011-05-31T10:55:00.000-07:00

I am in recovery phase. No one gets it, especially my family.

It has been 13 months and 2 weeks since my IV was removed. Me and everyone thought I would be on “easy street” after that. Well, I am on “easier street,” but what the hell does that mean?

It means that although the IV treatments worked miracles with me and for the most part I am enjoying life as never before, and who wouldn't after nearly 2 years in bed? Despite my gains, I still miss me.

I am adjusting to "new me." I like new me. I am thin, now blonde and taking time to literally smell the roses, but my brain is healing and my emotional resilience is still not there. I need to rest, avoid stress, air flight and family fights at all costs. I prefer to live in a Chrysalis. But unfortunately my chrysalis is permeable to cell phones, text messaging, needy tweeny/twenty-something or other children, and aging parents.

I still have trouble with air-flight (next post), excess stress, excess stimulation i.e.loud noise, bright lights, and crowds.

Let me give you an example of my progress. I just returned from our 4th child's college graduation, (yeah us!!). It involved transfer flights from Boston to Ohio, 90 degree weather, some family tensions (nothing too bad), noisy restaurants, shopping with 3 daughters for clothes, and all of this on the heels of having attended 2 funerals (no, not both Lyme, but see my last post). That is a lot of stuff, don't you think? I handled it all well until the last day of our trip when it all became a bit too much. And I felt overwhelmed, sad, depleted and much like burned toast.

I had mood instability but handled it without Clonopin or making a scene, unlike exactly one year ago when I attended our 3rd child's college graduation. At that time, I had to deal with air travel, heat, and being left alone amidst an enormous crowd all while bagpipes and a band played on, and on and on, and speeches, (with loud, intermittent clapping) seemed never ending.

At that time I had a full blown Limbic seizure exactly one hour after the ceremony, when in the safety of our hotel room, (although it actually began with a irrational argument with my husband in the elevator up to the room). My seizure that day involved nearly murdering my husband, and pretty much totaling our hotel room, all while missing the celebratory dinner. So there is great progress here, but I still miss me; resilient Superwoman me.

My lesson here is: be kind to me, be patient, and get to know "new me," she's not too bad, and I like her most of the time.

Indecision Can Be Deadly

2011-05-27T06:15:00.000-07:00

This week a Lyme friend lost life from Lyme disease.

Sadly the typical cause of death from Lyme is suicide. Wendy had little support from her immediate family and was paralyzed with indecision about what treatment option to go with. She made the rounds to all of the best Lyme practitioners. Eventually weight loss and poor nutrition made an intense IV therapy dangerous, though it was offered eventually. I had arranged for a nutritionist and personal chef to provide companionship and food.

I told her father, a Lyme supporter, that she should have been hospitalized. "But where, he asked?" He told me the week her husband had taken to the best hospital in the Medical Mecca of Boston. But they did not know how to treat her. They do not understand chronic Lyme, though we live in the nation's Lyme belt.

I have been suicidal many times throughout my illness. Without a friend and husband I could have lost my way.

Her dad and I hope to start a Lyme prevention system in her honor. Starting with a nonprofit devoted to prevention and support for suicidal sufferers.

Do find a program that feels right and stick to it. Pay attention to your nutrition, detox, and hormones.

Most Lymies have some issue with weight, due to drugs, poor gut function, metabolism and hypothalmic dysfunction.

Stay positive, get support, stick to a program and if it is not working or doesn't feel right change directions with your practitioner or find another. I use a team of healers and physicians. My program works for me but everyone is different. There is no one treatment for Lyme disease. At least that's what I think today.

I'm Conquering Lyme!!!!!!!!

2011-03-08T11:02:00.001-08:00

Well, that's a bold statement but I want the world to know that I am on the road back from Lyme world, four years later.

I have just returned from a great 4 nights away to Bermuda with my husband........wow, it was the first time that I felt "normal." I even drank a couple of Cosmo's and put away a bit of wine.

So many have emailed about how I am doing.......and what I am doing.

I am continuing on the same 4 days PULSED oral regimen every 3 weeks. That is, 1 week of M,W,F combined antibiotics, with a 2 week break in between. I am still taking Mycobutin (150 mg twice daily), Omnicef 300 mg (twice daily), Bactrim DS (1 1/2 tablets twice daily), with Flagyl (500 mg twice daily on Th and F). Other things like acupuncture, weight training, high protein diet, and supplements. I promise to go into more detail my supplements next post.

I am herxing less and less, (oddly, my worst herxes are 2-3 days after Flagyl). I rarely have noise intolerance, my emotions are much more stable and my mind is coming back. I am working on a 2 books and blogging about Women's health again. I think it will be a year before I attempt to return to giving workshops. I know I need to keep my things slow, get enough rest, (hard to do when you have years of life to catch up on). I need to consider my next phase of life carefully.

I'm working with a psychologist who specializes in PTSD, (Post Traumatic Stress Disorder). Lyme illness is so devastating and life altering and there are so many emotions to deal with as you recover. Anger over people who weren't there, anger over the medical system, the financial toll, the toll on one's family....I could go on and on.

Stay strong, please.

The Limbic System and Chronic Lyme

2011-03-08T06:58:00.000-08:00

Last update from me was in October! At that time I had had a difficult time controlling my Limbic system. Anyone with Chronic Lyme or who has a loved one with Lyme, should understand the Limbic part of the brain. It controls:

-Memory and learning
-Emotions, particularly anger, fear, and suicidal thoughts
-Hormone production and regulation
-Attention span and the ability to carry out tasks
-Hunger, thirst, sleep/wake cycles, and sexual function
-Fear and addiction
-The Autonomic nervous system, that regulates heart rate, blood pressure and body temperature

To get through Lyme treatments, no matter what treatments you are doing i.e. herbs, homeopathics, Rife, or antibiotics, you should support your Limbic system.

How? Check, support and monitor hormones. If necessary use seizure medications (Lamictal, Neurontin, and Clonopin) to help stabilize mood swings (suidical thoughts, phobias...

Some supplements that I found useful to help calm my brain have been Benfotiamine (lipid soluble thiamine), Methyl B12 injections, Deplin (high dose prescription methyl folate), Magnesium Glycinate, and calcium...

THE IOM Lyme meeting

2010-11-04T06:27:00.000-07:00

Who knew that Abraham Lincoln was an unknowing, but hopefully effective Lyme Activist?! While he was busy fighting a War, freeing slaves, and reuniting a divided nation, he also tackled health care (sounds oddly familiar,eh?).

During the Lincoln administration The National Academy of Sciences was formed. This (impartial) group worked to gather scientists to discuss and advise the government about all matters scientific. After 150 years this was expanded into 4 Academies of which the Institute of Medicine, (IOM), was one.

With much criticism of bias (which was blatant), a meeting recently took place regarding the state of chronic Lyme. This meeting was ordered by a Congressional subcommittee to clarify the plight of Lyme disease patients, Chronic Lyme disease in particular. Information garnered from the meeting and comments submitted from scientists and physicians will be used to draft a report for Congress. Hopefully this will lead to greater funding and support of our illness. The report should be completed at the beginning of 2011. I was indirectly involved in the meeting. Here are the comments that I submitted:

I am a published author and physician currently practicing medicine in eastern Massachusetts . My medical partner and I have treated many Lyme patients, both acute and chronic, over the past 15 years. Unfortunately, the number of Lyme patients has steadily grown as the incidence of Lyme disease has tripled in our region in the last 2 years. I have also had personal experience with acute and chronic Lyme, having grown up in Cape Cod. I offer my recommendations below. Please consider these while drafting your report.

1. There is an urgent need for multidisciplinary centers, focused on the treatment, research and cognitive rehabilitation for patients suffering from chronic Lyme disease. Presently there are no centers that recognize and manage such patients effectively. This growing group of sufferers has been labeled "Post Lyme Disease Syndrome," implying that active infection is no longer problematic. Scientific evidence was presented to the committee demonstrating the existence of dormant and relapsing active chronic infection.

2. Chronic Lyme Disease must be redefined. It is a disease complex which results from numerous infections, and injury to brain, nerves, connective tissues, organs, bowel, genitourinary tract and more. This complex has devastating physical and psychosocial consequences. Acute Lyme disease and acute Rickettsial diseases were well represented in the meeting, but there was no substantial discussion about chronic Lyme.

3. Chronic Lyme patients suffer from infections of the brain (Limbic System in particular), as well as other organs including bone. Borreliia is a Treponemal bacteria capable of penetrating all tissues, much like Syphilis. This important fact is not recognized by most physicians and the public at large. Necropsy studies of patients who have died from Lyme disease, be it suicide of encephalopathy, demonstrate "chronic meningitis, the occlusive meningovascular and secondary parenchymal changes that we found are similar to those occurring in the meningovascular form of neurosyphilis." (Acta Neuropathol (Berl). 1990;80(5):568-72. PMID: 2251916)

4. Psychiatrists and psychologists must be educated, and included in further meetings. The leading cause of death from Lyme disease is suicide, yet this was not mentioned in any discussions. I practice in one of our nation's oldest and largest Lyme belts and am surrounded by major academic centers, yet there are no psychiatrists or psychologists that I am able to refer my patients to, experienced in the treatment of the psychological manifestations of chronic Lyme disease . Most psychiatric manifestations are due to brain involvement as well as the severe isolation and lack of community and medical support.

5. EEG, brain imaging studies, and pharmaceutical trials are needed. Psychiatric symptoms are frequently triggered by excess stimulation (light, noise and emotional stress). Anti-seizure medications such as Lamictal, Neurontin, and Ativan have proved most effective in our patients. Unlike classical depression, patients suffering with Lyme associated depression remain interested in their environment and loved ones. Unlike classically depressed patients,
Lyme patients miss their premorbid functional state, rather than shunning it. Antidepressants are often ineffective and often exacerbate preexisting insomnia, headache, and mood lability.

6. Cognitive decline, learning disabilities, memory loss, loss of balance, loss of motor strength, bone pain, dental pain, varied urinary and bowel symptoms, sensory disorders which include neuropathic pain syndromes (shooting nerve pains, vibratory sensations, headaches, noise and light intolerance), visual disturbance, insomnia, and mood disorders are the primary symptoms in our chronic Lyme patients. The only chronic Lyme symptoms discussed with any depth were fatigue and joint pain. Though important, these symptoms are not the primary concern to chronically infected patients. During the proceedings, the only clinician, a rheumatologist who specialized in chronic fatigue and joint pain, failed to mention these symptoms and the need for clinical trials. No clinical or research based neurologists were included in the panel.

7. Studies are needed to investigate hormonal deficiency and hormonal disruption common to chronic lyme sufferers. Many patients are deficient in the pituitary hormones ADH, TSH, and ACTH. They commonly suffer from premature menopause, and ovulatory dysfunction, particularly problematic in adolescent girls and young women as such deficiencies are known risk factors for bone loss, as well as physical and psychological symptoms.

8. Programs providing counseling for pregnancy concerns must be developed. Transplacental infection is well described in the literature (Gestational Lyme borreliosis. Implications for the fetus.
Rheum Dis Clin North Am 1989 Nov;15(4):657-77). This is a major public health concern as children born to actively infected mothers suffer a wide range of learning and developmental delays in addition to blindness, and fetal death. This important topic was not mentioned in the meeting. Clearly education of all obstetrician gynecologist and the public at large must be undertaken. Currently all expectant mothers are screened for Syphilis, no screening for Lyme disease is done, even in heavily endemic regions.

9. Clinical collaboration is needed with veterinarians as their research and literature offers the bulk of information of many co-infections, particularly Bartonella. As mentioned briefly in the meeting, Bartonella infects nerve, bone and bone marrow, dental tissue, and down regulates the immune system, perpetuating chronic infection.

10. Recognition and investigation of Tick borne bacteria and protozoal contamination of our nation's blood supply must be studied. A program to monitor blood banks must be developed to limit this serious threat to national health.

11. There is an urgent need for educational support and recognition of learning disabilities and psychosocial trauma in children and adolescents suffering from chronic Lyme disease. Schools, community social workers, and pediatricians must be informed of this growing problem. As shown on the CDC website, the most commonly infected age group for Lyme is the pediatric population. Only one pediatrician served on the panel, and his discussion was limited to diagnosis and treatment of acute Rocky Mountain Spotted Fever.

I would like to thank the committee for addressing this growing epidemic which has become a major public health concern. It was heartening to see opposing medical groups begin a meaningful dialog necessary to better understand the nature of this disabling and complicated disease complex, we call Lyme disease. It is vital that meetings continue and that funding be made available as soon as possible to address this growing national epidemic.

OMG, How Time Has Flown!

2010-10-14T08:47:00.000-07:00

I cannot believe that it has been so long since my last blog. Sorry guys. I have received many emails asking me how I am doing. Like all Lymies still in treatment I've had my ups and downs but I am happy to report that I am continuing to steadily improve and doing very well.

What does that mean exactly? Well, I am once again a functional, loving, human being. I look forward to the day when I wake up, well at least most days. Except for the days when yeast has flared or I'm herxing. Yes, I still herx but not as intensely, not for as long, and during my drug "holidays" I am way more functional and the length of holidays is gradually becoming longer.

I am officially out of bed. No, I am not back to work, and no, I am not running marathons or going full speed like my old self- but I don't want to return to that over-doing, obsessed with accomplishment, overextended care taker that I once was. Hopefully I will hold on to what Lyme has thus far taught me. Take care of myself. I have officially retired my superwoman cape and I'm not interested in competing with the world. Let others have their glory, me,I am happy to make breakfast for my 11-year old, cook a good dinner, and literally smell the ornamental cabbage, (about the only plant that survived our first frost!)

Here's what I'm doing for treatment currently. Every 3 weeks I take Mycobutin, Bactrim DS, and Omnicef, on M,W, and F. I add Flagyl, for the 2 last days, consecutively. Then I go 2 weeks until I repeat this. At first I had a hard time with this regimen, perhaps because I started it after my longest ever (3 1/2 week) drug holiday, and had just had an air flight. Air travel is always difficult for me. I think going forward I will never do a treatment right after air travel. I developed a lot of Limbic seizures and experienced my first ever "absence seizure." What does that mean? I had an aura, or warning that something wasn't right (a "creepy" feeling in my body), followed by numbness of the face and then a feeling that I was down a tunnel and not really in me. As it progressed my daughter reported that I was just staring into space for about 4 to 5 minutes. It sounds strange and I'm sorry for the details, but I want others to know about this sort of thing and how weird it feels. Any way, it was a difficult thing and I was entirely emotionally drained most of the next day. That was many weeks ago and I have since had okay treatment weeks- some increased wrist pain, foot pain, loss of appetite, fatigue, not feeling like being around people and noise intolerance.

I have had more struggles with yeast, which has been a major downer. Only changing probiotics and using the Pleomorphic (German Homeopathics) could touch it. Yes, you can find these on the internet (there are several sites, here's one contact, 866-505-7501- you can shop prices). I have alternated Pef with Pleo Alb or Pleo Ex (a combination of lower doses of each). I use suppositories, and as they are not cheap, often break them apart.

My other worst symptom is a bone infection in my inner wrist (distal ulna). Yes, it is not in the joint but in the bone, as is typical with Bartonella. I have not bothered to MRI it (insurance squabble not worth it)- but I had a similar problem in my shoulder and MRI of this showed "bone marrow edema." Of course it was reported as "normal." Then I learned that Bartonella infects not only the periosteum (outer lining of the bone), but the bone marrow as well. The only oral Bart drug that can enter bone (Dr J assured me it will get it), is Levaquin. So I am building up to do some Levaquin- probably 2 cycles from now.

More later- thanks for being patient blog readers. Next blog I'll share with you my comments to the IOM (Institute of Medicine) meeting this week in D.C. Be well and never give up, please!

Ending IV Therapy: When is Enough, Enough??

2010-07-05T08:31:00.001-07:00

IV therapy was a long haul and now I am ready to tell you how it ended. Not to spoil the surprise, but I am doing great now on orals. Let me catch you up to where I was from my last post.

Week 28: Drug Holiday

This was hardly a "holiday." I had been off Babesia treatment for a couple of months and during this week I relapsed. How did I know? Easy, the headaches from Babesia are the worst headaches in the world, at least in my world. I liken them to an axe assaulting your skull over and over again. In addition, night sweats reemerged. From my experience I can tell you that Babesial sweats are heavier, wetter, and more diffuse (they occur throughout), as opposed to Bartonella sweats which are lighter and mainly in the chest. If you are reading this and having significant night sweats and headaches- get on Babesia treatment ASAP, even if tests are negative or pending. Like I always say, if you are very ill chronically from Lyme you have all co-infections and even the co-infections no one yet knows about. And treat for these even if your tests are negative!

I restarted Malarone and Azithromycin and though initially my symptoms worsened, within a day or two, the headaches and sweats stopped. Dr J suggested that I continue pulsed (M,W,and F), high dose Malarone (4 tablets twice daily) with Azithromycin, (500 mg twice daily, and Artemesinin (1000 mg twice daily). Yes, I know pulsed therapy for Babesia is controversial, but I have come to see it's value, but that's another post.

Week 29: IV Levaquin/Meropenem and oral Rifabutin

This drug combination is a pretty intense Bartonella treatment. I was able to function but developed hyperactivity, insomnia, and OCD, in addition to a lot of nausea and reflux. Initially I felt my GI symptoms were side effects from the medications, but since I have come to realize it was all probably due to Bartonella die-off. Bartonella causes a lot of (varied) gastrointestinal complaints, including fullness, bowel changes, abdominal pain and nausea.

What ever the reasons, I grew certain that my IV should come out. I was done. I had done enough IV treatments. And so with my plea to Dr J to, "stop the train," my PICC line was removed, 337 days after placement. Uneventfully and easily within one second the line was out and in the wastebasket.

I was not cured and back to normal but I was better than I had been in years. When my line was first placed I could not add numbers, collate papers, follow recipes or shopping lists, help my 11 year old to school, control my emotions, or feel happy to be alive. I had horrible dental pain, and a frozen shoulder. All of these limitations were now gone or just about gone. When the line was first placed I had felt completely hopeless and lost. The day it was removed I knew I would conquer this disease fully.

The day my PICC line was removed I boarded a plane for Florida and jumped into a swimming pool! I went to crowded restaurants, and shopped (with a tween), in noisy stores. What a difference a year of intravenous antibiotics makes.

Weeks 27: Burn Out and Yeast

2010-05-31T22:42:00.000-07:00

For a variety of reasons this drug holiday was overdue and by the time it rolled around I felt like my body was "burned out" from the intense IV treatments. Here lies the dilemma in Lyme treatments: is the the treatment too toxic or are you herxing? Most likely it is both. This is where pulsing makes so much sense to me. I could not imagine doing drugs everyday, day in and day out, continually beating down my body.

I believe the goal in "conquering" chronic infections like Lyme, Babesia, Bartonella,and perhaps the XMDR virus is to fortify the immune system so it can go back to doing its job. Herbs or antibiotics will surely lower the infectious load but I don't believe these infections are ever entirely eliminated. To resume a great life you need to improve your overall health. Yes, lowering your infectious load is necessary, but overall health and balance with adequate detox, immune and hormone supports are perhaps equally important.

I have had Lyme since childhood. I lived a full life, though I frequently had to build up my body with all of the other things we grow tired of hearing about (herbs, hormones, supplements, good diet, etc). Unfortunately despite this, reinfection with a (seriously contaminated) tick leveled me in 2007.

Throughout my illness I had been faithfully supplementing with Transfer factors, vitamins/minerals, adrenal hormones (Pregnenolone, DHEA),and Estradiol/Progesterone. Normally, during drug holidays I added detox treatments, (infrared sauna, IV vitamin C, B complex, Magnesium, trace minerals, Methyl B12, and Zinc), followed with IV Glutathione, oral NAC, and vitamin E. But by week 27 I was too wiped out to get it together to do any of these marvelous things. I had "hit the wall."

I felt burned out from everything- drugs, supplements, IV pushes, gluten-free bread, IV nurses, green drinks, lab tests, you name it. Burn out can be a slippery slope, and in this apathetic state I became lax with Probiotics and developed yeast- severe, intractable yeast. Diflucan, Nystatin, Clotrimazole, and other anti-fungal salves had no effect. Thankfully, my orthomolecular practitioner prescribed Pleomorphic Alba (www.naturalhealthyconcepts.com/mm5/merchant.mvc? ), which worked immediately. I started back on Sacharomyces, (4/day), with 2 capsules of full spectrum probiotics, and glasses of Goat Milk Kefir. Yeast brought me out of supplement disdain and apathy.

P.S. Despite my burned out state, I was still able to do household duties, something I had not been able to accomplish prior to IV therapies.

Tigecycline- Works Well but Watch Out For the Sun

2010-05-21T08:38:00.001-07:00

Intracellular drug levels of many antibiotics are reduced by efflux pumps which often make the intracellular levels of the drug too low to have a beneficial effect. With Tigecycline, the efflux pump is inhibited which increases intracellular concentrations. Nausea can be extreme in some cases. Sun sensitivity is an issue, so beware in these summer months.

My personal experience was that Tigecycline cleared out my head! There's no other way that I can put it.

Are Some IBS Patients Suffering from Bartonella?

2010-05-19T05:15:00.000-07:00

Many IBS (Irritable Bowel Syndrome), patients were shown to be "cured," following treatment with a Rifamycin like drug (Rifaximin).

Bartonella infection can cause a host of gastrointestinal symptoms, including nausea, reflux, diarrhea and generalized bowel upset. It can often be difficult to distinguish Bartonella die-off from antibiotic associated side effects.

http://ihealthbulletin.com/blog/2010/05/04/rifaximin-antibiotic-treatment-irritable-bowel-syndrome/

Week 26: IV Meropenem (Merrem) and Levaquin

2010-05-11T06:01:00.000-07:00

This was my first experience with Meropenem (Merrem). Laboratory tests have shown Meropenem behaves similarly to Ceftriaxone on Borrelia (Lyme bacteria). I think Ceftriaxone is toxic and overused. Lyme sufferers have enough misery, and shouldn't have to deal with gallbladder removal, as a result of prolonged (daily) exposure to Ceftriaxone. There is also likely to be less drug resistance with Meropenem.

Meropenem caused many of my Lyme symptoms to emerge. I developed pain in my knees,wrists, shoulder, and fingers. I also had a LOT of fatigue. Initially I slept soundly for 12 to 14 hours and took naps in the afternoon. However, as Levaquin hyperactivity took over, my fatigue was replaced with hyperactivity. At times it was uncomfortable as I felt tired, but restless at the same time and napping became impossible. As the week wore on, I began to have some OCD, with a touch of mania. I spoke quickly, thought quickly, and cleaned most things within immediate view.

Levaquin also caused reflux, nausea, and belching. The belching was strange and unlike a burp, or anything I had ever experienced. Dr J explained that the crico-thyroid muscles can contract leading to this odd symptom. Levaquin also causes constipation- so if you use it take a lot of ground flax seed, and magnesium citrate if you have this problem.

On Sunday, last day of infusions, I developed more hyperactivity, noise intolerance, agitation/ shaking limbs/ muscle spasm/ skin hypersensitivity and worsened insomnia. I had mild phobias and was easily tearful.

I looked forward to a drug holiday and cannot imagine how people take antibiotics daily, months in and out, (as I once had).

Week 25: Levofloxacin (Levaquin) and Tigecyline (Tygacil)

2010-04-09T07:26:00.000-07:00

This was my third course and Tygacil and Levaquin. It started out okay, as I was able to sleep through the nausea, but the next day I had reflux and an uncomfortable feeling- sort of like I had swallowed a beach ball. For this reason I changed dosing to every 2 days…(M,Th, and Sunday).

After the second IV drug day (Thur), I had a very hard night. A lot of nausea and when I got up to get a bucket to heave in, my legs began to shake/?hop uncontrollably. When I got back into bed I began to shake and had strange breathing- almost like my diaphragm was in spasm. It felt a bit like a seizure, but I conscious. It lasted about 10 minutes and then when it was over the nausea was miraculously gone. I think the nausea was die off, not a drug reaction. The next 2 days I felt surprisingly good. Active, happy, productive- slight insomnia but less than previous and no mania and very little OCD (too bad, my house could have used a "spiff up").

Unfortunately, the "beach ball," grew back in my stomach and I was just unable to ponder any more Tygacil. The nausea increased and I was able to do only Levaquin, and finally Dr J advised me to stop the Tygacil and switch to Meropenem (Merrem) the next Monday. I had made it through 13 doses of Tygacil (I think that was the count, it was all sort of a blur), and I was officially through the toughest part of the protocol.

Horrible as it was, it was working. In the weeks to follow I was to begin regaining my life.

Weeks 24: Drug Holiday, (No Antibiotics!)

2010-04-09T06:31:00.000-07:00

I love that they call breaks from antibiotics, "drug holidays." Like your cells get to travel to an exotic land and lay around on the beach recuperating from what feels like gallons of toxic drugs. It was nice to be off antibiotics, but it was not a holiday especially because it ended with 2 days of Metronidazole (Flagyl).

Flagyl is a bitter pill, literally. I have to take mine in honey. I plunk it into the honey jar and fish it out with a spoon, with gobs of honey, and then swallow it quickly. This works. I can take it without gagging, but it still gives me nausea for a couple of days. I don't know how, (before doing the Dr J protocol, which limits Flagyl to two days, after drug cycles), I took Flagyl 1-2 weeks straight, every 6 weeks! No wonder I felt suicidal much of the time back then (before I discovered Lamictal and short pulses of Flagyl). Now don't get me wrong. I do think the long Flagyl cycles did me a lot of good. No way of knowing but I am doing very well on this protocol and I think I owe this to some very solid treatments before starting antibiotic pulsing.

There is a time and place for pulsing. It is certainly NOT a treatment that I would start with, but if you are lingering and miserable after 6 to 12 months of every day oral treatments, I think it is great and is working well with me.

Anyway, week 24 was a drug holiday. I was recovering from bronchitis and travel, and Tigecycline. Maybe that's why this week didn't feel so good.

To help, I did a detox, using Lactated Ringer infusions with added vitamin C, B Complex, Magnesium, Methyl B12, and Zinc. In addition I did Glutathione pushes every other day(1500-2000 mg).

I'm not sure, but maybe this was too much, or maybe my immune system was getting "more targeted," or maybe I was just very run down, but as the week wore on I became achier, and achier, and discouraged. It all felt like way too much. It was after all, 2 years since being diagnosed and nearly one year of IV therapies.

Alas, I did get over this and as I write this, weeks later, I am doing better!

Weeks 20-23 Protocol: IV Tygecycline and Oral Mycobutin

2010-03-07T06:36:00.000-08:00

Okay I had to repeat Tigecycline (Tygacil). Unfortunately because I planned to travel for family vacation my plan changed and instead of 2 weeks between cycles I was to have only 1 week to recover from the very intense IV Tigecycline and Mycobutin (Rifabutin, orally).

I did my usual approach to Tigecycline: take it late, say 7 pm, and medicate myself so I sleep through the nausea (using Zofran, Compazine and Phenergan). Well it worked, in that I slept through the nausea, but the drugs to prevent nausea snowed me under so much that I turned into a bumbling nonfunctional Zombie. I had trouble focusing or doing anything for the next 2 days. I was nonfunctional and "spent." I felt toxic and discouraged. I was done with drugs. I could not look at the IV bottles or swallow another pill.

This is the lesson learned. LISTEN TO YOUR BODY. If you are on a treatment plan and feeling toxic you may need to take a break or change course or up your detox. The trick is figuring out when you are toxic/nonfunctional from herxing and when it is drug related. From what I've learned, taking breaks during treatments gives you a chance to recover and gives your body a tune-up. I did IV vitamins (Meyer's cocktails), and IV Glutathione "pushes," (and yes you can do these with or without a PICC line).

After a week of recuperation and being off of all drugs, I had fun! I did Disney and Sea World with an 11 year old! We roller-bladed on Venice beach, and visited the stars at Madame Toussaud's. We had a great time and it was thrilling to enjoy life and a vacation, after nearly 2 years in bed. So, the Tigecycline, as horrible as it was, worked some magic.

After the excitement I caught a cold on the plan ride back home. My first cold in 2 years. It is said that Lyme patients never get colds, and if you get a cold it is a sign that the immune system is improving, and able to mount a response to a virus. Thrilling thought, but not so fun.

I have one more cycle of "Tiga" cycle to endure.....then almost time for my PICC line to come out. These treatments are tough, but for me have been the most effective.

Weeks 11-19: I'm So Much Better

2010-01-25T05:49:00.000-08:00

My last post detailed weeks 9 and 10 of Dr J's protocol. This post is long overdo for a couple of reasons: (1) I've been on the challenging part of the protocol, pulsed IV Tigecycline (Tygacil, 50 mg), and (2) (the best reason of all), I am so much better on my days and weeks off antibiotics that I've been "doing life," and not living through a computer!!! Remember some of the doses mentioned here are high as I am pulsing drugs, M, W, and F.

After nearly 2 years largely "in bed," I am coming back! This protocol is working and I am doing better than ever.

To summarize the last several weeks: a lot of nausea and vomiting on Tigecycline infusion days, with oral Mycobutin (Rifabutin), high dose Artemesinin (1000 mg twice daily, M,W,F), ending with 2 days of Metronidazole (Flagyl) and many herxes, such as joint pains, (mainly at night), persistent, but improving R shoulder pain, oscillating body temperature, and hyper even manic moods coupled with classic OCD, (obsessive compulsive disorder). Fortunately the OCD has improved my (previously nonexistent) sex drive and greatly helped with organizing and house cleaning. The exuberant, almost euphoric feeling of mania is a welcome change to nearly 2 years of moody depression.

On my drug holidays I have been feeling, for the most part, "normal." I am slowly becoming social, feeling more connected, and enjoying my days instead of barely tolerating life and hiding out in dark, quiet corners. I am making breakfasts, driving carpools, shopping at noisy clothing stores with my kids, following recipes and shopping lists, and cooking meals. It's so nice to hear my daughter say "Wow, Mom is back."

I am about to start my 3rd, 2 week cycle of pulsed Tigecycline. Dr J says that my improvements are ahead of schedule, which he attributes to my adding vitamins to intravenous Lactated Ringer solutions, in addition to IV pushes of Glutathione, and detox work (amalgam removal, infrared sauna, salt baths, Chlorella, NAC and EDTA.

The nausea and vomiting from Tigecycline is very tough, but this drug has been a "game changer" for me. My immune system and general health is returning (remember I have had Lyme since age 12 with bone, liver, lung and brain involvement (Limbic Seizures, with spasticity on my left side).

I am now in my 19th week, having completed 2 cycles of Tigecycline. My how time flies in Lyme world!

Weeks 9 & 10: Dr J Protocol

2009-12-31T13:08:00.000-08:00

This was the first time that I was to have 2 weeks without antibiotics!!

For the first 3-4 days I still had die-off symptoms (sweats, hyperactivity, mood swings, and a lot of fatigue), from the IV treatments and the 2 preceding days of Flagyl. Slowly I started to feel more "normal," though I still had some trouble falling asleep and eczema remaining on my face.

My shoulder pain, which had been significantly worse on Levaquin- particularly at night, gradually improved. By Thursday I began to enjoy very good energy, less shoulder pain. For the first time since becoming ill, I had NO noise intolerance, NO sweats, and a good appetite. I no longer suffered hand or foot pain, my skin was better, and I had stable moods.

By Friday on the 1st week off antibiotics I began feeling great and was able to enjoy full days and felt more and more like my old self, (everyone was noticing this).

On the days off antibioitcs I infused one liter of Lactated Ringers solution. To this, I added magnesium sulphate, methyl B12, B complex, and vitamin C (all on alternate days). In addition I did glutathione intravenous "pushes", 2-3 times/week (1500 mg at a time).

Week 10 was my second week off antibiotics. I continued to feel well but by the end of this week, (by around day 12-14), I experienced more fatigue with more emotional ups and downs. This was better than my first time off antibiotics, when symptoms developed by day 6. Dr J explained that feeling better and then worse,off antibiotics, was not a relapse, but rather it was a herxheimer reaction to the body's immune system kicking in and attacking organisms- similar to what antibiotics do. For this reason, one can expect to feel worse as the immune system becomes more active and more "targeted."

Week 8: Dr J Protocol

2009-12-29T12:44:00.000-08:00

This week was a repeat of last (IV Levaquin/Zith with Mepron/Art on M,W, and F) in addition, Flagyl was added on last 2 days (Th, F).

I upped the Lamictal in anticipation of more die-off (25 mg am and 100 mg bed time with Lyrica still 125 mg at night). Despite this, the regimen made me feel revved up and I was unable to sleep at night (up till 2 am). In addition fatigue worsened, as did dizziness and nausea. The intravenous Azithromycin made me feel as if could sleep all day. I lacked ambition, had no patience with people, and felt uninspired and progressively down and depressed (like I used to all last year i.e. I felt like a failure, jealous of others, felt ugly with no ambition, or direction. In fact I wanted to quit the IV protocol.

Mid week (Wednesday) I still a lot of nausea, dizziness, moodiness.

Thursday I added Flagyl, which caused sweats (worse in the night) and more nausea. Joint pain also seemed worse. Mood became more depressed (felt ugly, hated the protocol, felt discouraged).

I also had significant weight gain (8 pounds in 3 wks!) on the Lyrica. On the weekend I changed the 125 mg Lyrica to 200 mg Neurontin and started to use Motrin for my shoulder and hand pain. I write this now on week 14- so please understand that it gets better- but the protocol is tough.

Week 7: Dr J Protocol

2009-12-13T07:48:00.001-08:00

This was the first time I had ever been on Levaquin (see below).

Almost immediately when the Levaquin (IV) was started, I developed hand, arm, and foot pain and some nausea. I also felt briefly emotional.

I had some hallucinatory experiences within hours ie.stairways were moving and I felt as if I was walking on marshmallows. I was at times paranoid of strangers and had the feeling of watching myself (dissociation). That night, I had strange, unpleasant dreams (eating animals while they were alive/jelly-fish-frogs that slipped between my fingers…). When I woke up the next morning I was hyper, with OCD/ADD but I got a lot of things done! I cleaned bedroom drawers, kitchen drawers, my daughter’s bookshelves, washed toothbrushes, kitchen appliances, sorted a lot of mail, sorted a lot of bills. I literally could not stop myself from doing/cleaning. I later heard that other people have felt this way with Bartonella die-off.

My shoulder pain seemed better the first few days, in fact, everything seemed better and enjoyed myself. I seemed to have boundless (somewhat manic) energy. I felt like dancing and was energized but hard to stay focused. I can so understand why manic bipolars do not want to medicate themselves. I enjoyed this altogether too much. It was hard to sleep. So I didn’t.

As this week progressed I developed increasing shoulder pain. It felt as though someone had "shot" me in my arm. Aside from this, I felt good but by Saturday evening I started to crash and felt tired, nauseated and moody.

Sunday it was hard to wake up- felt very out of it. I was fussy and my arm pain was horrible. I was depressed and unable to fall asleep easily. I had to increase Neurontin (up to 400 mg) and increased my Lamictal (150 mg)- which helped.

Levaquin, Even with Shoulder Tendonitis

2009-11-28T15:22:00.000-08:00

My presenting symptom of chronic Lyme was shoulder pain. I spontaneously awoke one morning feeling as if my shoulder had fallen out of its socket. This symptoms has persisted for the past 18 months despite PT, MRI's, orthopedic and rheumatology consults. Levaquin was never used in my Bartonella therapies because of this shoulder problem.

Levaquin is given a bad wrap on many Lyme forums. People are all about worry and fear of its tendon rupture potential. Yes, this is a known (serious) side effect from all Quniolones, (Cipropfloxacin or Levofloxacin). But it has an important place in the treatment of Bartonella.

When Dr J mentioned using Levaquin I was frightened. I want give you the highlights that Dr J recently gave me. His Levaquin talk went something like this: "Bartonella infects bone- particularly the periosteum (outer covering of bone). I suspect that Bart is causing your arm pain, which may be impossible to differentiate from tendonitis. Levaquin is the drug of choice for Bartonella and giving it IV is the only way to get high enough doses to penetrate bone. If you need shoulder reconstruction after your Lyme is in remission we will do it, then and only then. Until that time, no steroids or surgery, and we treat your infection."

He adressed my fear head on. He warned me that my shoulder pain would probably get worse on the Levaquin, temporarily. So my week 7 of his protocol began with intravenous Levaquin and intravenous Azithromycin (in addition to Mepro/ Artemesinin)- all M,W, F.

I Am Addicted To My PICC line

2009-11-19T06:16:00.000-08:00

Okay, this is maybe for those of you out there who are thinking "I will NEVER do IV therapy." I was one of you. I was certain that I would get better quickly with oral antibiotics and herbs and supplements to detox and nourish my liver. I did acupuncture and inspirational tapes, and restorative yoga. I had conquered Lyme in the past, quite nicely with alternative therapies. I vowed that I would never have a PICC line in my arm.

Well one day, 9 months into oral antibiotics and holistic therapies (for Lyme, Babs and Bart), my best Lymie friend (an internet chick who has helped me navigate this illness more than any doctor/healer before), basically yelled at me, "P, this is not a life! You are living between the hours of 10 am and 2 pm."

She was right. It was that message that made me seek another opinion and get started on IV therapy. Was it hard? Yes. Was it worth it? Yes. Is it working? Yes. Maybe it is working too well.

I am seriously addicted to my IV. I enjoy the fact that when I infuse I can NOT do anything else and after it is done, if I am sleepy, people understand. I enjoyed being treated as a patient, instead of a malingerer, who couldn't seem to get better. I enjoy the sympathetic, kind looks I get from the airport screeners when they ask me to roll down the sock on my arm. They (the airport people) let me bring extra size liquids and always wish me love and good health. We Lymies don't get much of that.

I enjoy doing Lactated Ringer infusions early in the morning. They make me feel better and give me an excuse to sleep in, or if I do it later, an excuse to watch trashy television.

Can I do all of this without my IV? After my IV is out will I still get loving stares and some recognition that what we go through is hard? I don't know. All that I know is that for the first time (for over one year), I can add numbers, follow recipes, shopping lists and write medical blogs. I feel like retuning phone calls, having sex, and eating food. I can tolerate loud laughing (better) and don't get overwhelmed and teary when things go wrong. Keep posted as sooner or later it will be coming out!

Attitude

2009-11-18T08:06:00.000-08:00

I recently found this quote and thought it so true of all of us dealing with Lyme.

"The longer I live the more I realize the impact of attitude on life. Attitude is more important than education, than money, than circumstances, than failures than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. The remarkable thing is we have a choice everyday regarding the attitude we will embrace for the day.

We cannot change our past.
We cannot change the fact that people will act in a certain way. We cannot change the inevitable.

The only thing we can do is play on the one string we have and that is our attitude...

I am convinced that life is 10% what happens to us and 90% how we react to it."

By Charles Swindoll

Lyme Is An Anti-Social Disease

2009-11-15T12:14:00.000-08:00

It's amazing what an anti-social disease Lyme is. You not only don't have the energy to go out but you don't feel like being social. It's just too much work and socializing (even small groups) can be overwhelming. For over a year I did not answer the phone, return emails, and avoided saying "Hi" to people.

I recently met a doctor who was studying Lyme and I asked him what we (Lyme patients) were like. He said, "Well Lyme patients seem normal at first, but after about 5 minutes you can see them get quiet, withdrawn and wilt." Sound familiar?

For me if I am at a social event and I start to get like this I just know to get out of there as it is usually a warning that I am overstimulated and within minutes can feel like an emotional and even irrational mess.

Now I must say that I am now soo much better on Lamictal, and having done a lot of Bartonella treatment. But, I can still find myself quieter than usual when socializing. People don't get it. They still have a hard time understanding why you just don't feel like being out in crowds or social gatherings.

Promise to blog more on my IV protocol (weeks 7 and onward) soon. It's hard to believe that I am about midway through Dr J's IV protocol.

I am happy to report that I am having more and more "normal" days and starting to actually look forward to the holidays.

Week 6: Dr J's Protocol

2009-11-09T13:07:00.001-08:00

So this was the second time I had a week without antibiotics. It was for the most part, GREAT!!! I don't think I could ever go back to daily medications. I had energy and did things like shop for clothes (first time in a year!), invite people for dinner, and well just woke up happy.

Last time off antibiotics I felt pretty well (except for some persisting shoulder and joint pains) for about 4 days -then sweats, fatigue and noise intolerance set in. This time I made it to 6 days. By the 6th day I was more fatigued, more noise intolerant, and feeling more withdrawn and moody.

The 6th night we had guests over for dinner and I was okay but as the night wore on I could feel myself getting quieter and more withdrawn. I became very noise intolerant and asked people to keep their voices down. Suddenly, I just had to leave the room and started to feel "crazy" and tearful and paranoid (like I used to feel before Dr J and Lamictal).

I had just hit the wall and done too much. Oh well, now onward to a week of pulsed (oral) Mepron and Artemesinin, with IV Levaquin/Zith....

Female Hormones and Lyme

2009-11-05T06:24:00.000-08:00

Lyme and co-infections affect ALL hormones by interfering with the parts of the brain that control hormone production, the hypothalamus and pituitary gland. All hormones (thyroid, adrenal, growth hormone, melatonin, ADH (anti diuretic hormone), and sex hormones are often deficient.

In addition to low hormones, hormone receptors can be affected- so blood tests may be "okay," but you feel like your hormones are low (see my women's health website, phulicohanmd.com for lists of low hormone symptoms). In addition to low hormones our liver can have problems activating and breaking down (metabolizing) hormones. So what does this mean?

Well, we infected ladies can become raging lunatics- particularly those of us still cycling (thank God I am 53 and done!). You can expect worsening Lyme symptoms during PMS weeks, (highest hormone levels) and during (or right after) your period (lowest hormone levels). To complicate this further, Lyme has its very own 4 week cycles......

So what's chronically infected woman to do? Two things: (1) support your liver and (2) support your sex hormones.

Liver Support

The liver is where hormones are processed, activated and broken down. There is a saying in Chinese medicine,"happy liver, happy woman."

In Lyme our liver is already overwhelmed clearing away dead bacteria, and processing antibiotics/medications and hormones. It's no surprise that liver nutrients become depleted, leading to a "congested" liver. This can cause us to feel sluggish, irritable and depressed. We may also have headaches, nausea, breast swelling, menstrual cramps, abdominal bloating, constipation or diarrhea, and nipple itching. Add to this hormone fluctuations and Lyme, Bart,and Babesia toxins and its a mess.

Things that help the liver:

1. Avoid alcohol, caffeine, dairy, sugar as much as possible (I know we are doing this most of the time so let’s not get too hard on ourselves- my opinion, this diseases is hard enough). If you have to cheat do it before ovulation!

2. Supplements like milk thistle and Lipotropic Complex (I like the one made by Integrative Health). Talk to your doc about these. At first use them daily (start slow to avoid nausea if your liver is particularly sluggish) and after you are doing better you can use them in the 2 weeks before your cycle.

3. Liver nutrients are important and can be taken anytime of the month, but run them by your doctor! The most important supplement for the liver is probably vitamin C, 1000 mg 2-4 times/day (too much and your bowels can loosen), lipoic acid, 100 mg twice daily, B vitamins- particularly Folic acid (many of us need methyl folate (Deplin prescription, or Folapro, by Metagenics), methyl B12, NAC, 500-1500 mg/day, Calcium -D glucarate, 1500-3000 mg/day (I talk about this in my book), reservatrol (expensive and I don't use it much but popular in Lyme books), pycnogenol (another expensive one use a little here and there). CoQ10 is great and can be measured- but it interferes with Mepron action so has to be used at the right time.

4. Acupuncture is great for Lyme and if possible schedule appointments in the 2 weeks before your cycle.

5. Food: wheat grass, green vegie drinks (see my juicing blog below), ground flax seeds (must be ground to work), sprouts (all of them and so cheap to do yourself),legumes (beans and lentils), dark greens (kale is best!!), cruciferous vegies (bok choy, broccoli, cabbage...)

6. Exercise. I know must of us can barely get out of bed many days but what ever you can do helps. Gentle movements can help the liver. Whatever stretching you can do helps. Yoga is great and helps the immune system.

7. Detox such as body brushing followed by infrared sauna or detox baths and colonics all help

Supporting Your Hormones

Natural hormone support is safe and can help you deal with Lyme. At any age, the stress of chronic infections lowers progesterone, (a precursor to cortisol). I like to think of progesterone as a "luxury" hormone because she is only made during "good" times ie times suitable to make babies (no infections, stress and lots of food). Lyme and chronic stress are not such times (maybe nature's way of protecting us against getting pregnant while infected). Also our infinitely wise body will always make cortisol over progesterone. Evolution does not care if we are a little crabby or bloated, while fighting wild beasts and infections.

Low progesterone can cause: heavy bleeding, short cycles (every 26 days of less), skipped cycles, headaches, insomnia, PMS/moodiness/sadness, bloating, or bowel upset, all before the period.

If you suspect your hormones are off, these blood tests (on days 19 to 21 if you are cycling) can help:

-Progesterone (it should be over 11).
-Thyroid (TSH, free T3 and free T4). TSH should be over 2.0

If needed, use natural progesterone (orally or skin cream) on days 15- 25 of your cycle. (Details of how to do this are in my book, The Natural Hormone Makeover)

If your ovaries are forty years old (or older), know that you no longer make progesterone reliably and your estrogen may be starting to drop also.

Estrogen normally starts to fall a few years later than progesterone, but Lyme can speed this up. It is not uncommon for infected women to show signs of low progesterone and low estrogen in their late thirties.

Signs of low estrogen are headache, fatigue, hot flashes, sweats, lack of sex drive, vaginal dryness, urinary frequency, hair loss, dry eyes, dry skin, dry throat, dry everything- all worse during and after the period. These symptoms are a lot like a bad Lyme day, so if in doubt, measure an estradiol level. It changes day to day but, if its under 60, consider using natural Estradiol, (skin lotion, gel, or patch).

Vaginal discomfort (dryness, pain, and itching) can be hard to tell from yeast overgrowth. Estriol vaginal suppositories (made by Bezwecken and available online) are great. I alternate these with yeast suppositories as needed. Let your doc know if you start these (Estriol). Estriol vaginal suppositories are safe (they can be used by women with breast cancer). Start with one/per day for a week, then one every 3-4 days as needed.

Transdermal (topical) testosterone is sometimes needed and can even be used vaginally. I only give it after I have supported a woman's DHEA (DHEA-S above 120), as most women make testosterone from DHEA. You have to be careful with Testosterone as it can cause hair loss (use Saw Palmetto to avoid this). Be sure to have your doc check a free testosterone level.

Interesting Site Regarding Dental Lyme

2009-10-30T09:54:00.001-07:00

As most of you know I was incapacitated from dental sensitivities due to Lyme. These were wrongly diagnosed as neuropathic pain. A biologic dentist in California explained to me that I had Lyme infection within my gums and teeth which which altered the dental tubular function in these teeth. This was apparently commonly seen with Syphilis in years past. Like Syphilis, Lyme only affects the front teeth and first molars (upper and lower). Tubular dysfunction can result in horrific pain, as I can atest to. I lived through straws for 6 months.

Homeopathic gels and amalgam removal resolved my pain. I still have sensitivity to cold which is common with Lyme, but not the severe pain I had experienced from tubular dysfunction.

Here is an interesting site to check out about this topic. I am planning to research more about Lyme in the teeth to share with you.

http://www.lymebook.com/stealth-killer-nordquist

Week 5: Dr J's Protocol

2009-10-30T05:23:00.000-07:00

Okay week 5 is the hardest for me of this current protocol. It's the week where I do everything (everything I did last week with the addition of Bactrim DS and Flagyl later in the week), but only M,W,F, which makes it all bareable.

Adding Bactrim to everything I did last week (see below), brought on some shooting arm pains and a bit of apathy (Bartonella). I am happy to report that NO depression since starting Lamicatal 5 weeks ago. In fact it is exciting to see glimpses of my old self!! My sense of humor and joking are peeking out. I am even feeling a bit more social. I find myself saying things like,"Hey, lets do coffee next week." I am calling people back and sometimes answering my phone! (Only you Lymies would understand.) I am happy to report that I am getting excited about medicine again and accepted a speaking gig in July!!

So as the week went on I added Flagyl. With this I had more nausea, increased shoulder pain, neck/back pain, some sweats (but hardly any), some chills and heat, and definitely more ADD/hyper feeling- which was making it hard to focus. I increased my Lyrica last night (up to 125 mg). This has caused a bit of dizziness- but did sleep well and feel less disorganized today.

I talk with Dr J today about the next protocol. I think we are going to target Bart- while continuing Babs and Lyme forms of treatment. This is crucial to continue hitting all 3. I think that's why many don't get better. This and failure to address detox.

Week 4 on Jemsek Protocol

2009-10-28T07:55:00.000-07:00

Okay so week 4 is a repeat of week 1- that is I do IV Azithromycin and Clindamycin with Mepron and Artemesinin (1000 mg twice daily) on M,W, and F.

After being off antibiotics for one week I started to get some symptoms back- some sweats, joint pain and more fatigue. I was actually looking forward to restarting antibiotics. Not sure if it was my imagination but felt more energy first few days on Clindamycin. I am also enjoying the relaxing effects of IV Azithromycin.

I am tolerating this regimen really well. I do get nausea if I have an empty stomach- so on M,W and F morning I am careful to eat a full breakfast before infusing (this is also good as I have to doing the ghastly Mepron with fatty meal).

Days off antibiotics I do the Lactated Ringers which takes about 3 1/2 hours to go in. I have started waking up early to start the infusion and going back to sleep so that it is in by 9 to 10 am. On the days that I do this I also do infrared sauna.

I haven't changed doses of Lyrica (100 mg at bedtime) or Lamictal (75 mg at bedtime)

Hard to know what is working but I continue to do very well i.e. stable moods, sense of humour is back, less sweats, and able to do more "normal" things and tolerate socializing better. I still mainly like to be alone and need a LOT of rest. Not able to think clearly like the doc I was - but one day I can see that will return.

2009-10-28T07:54:00.000-07:00

Week 3 on Jemsek Protocol

2009-10-21T06:41:00.000-07:00

Week 3 was the best ever! I felt great within a day or 2 off antibiotics. I felt normal again. Needed less sleep, more motivated and interested in things. I cleaned and organized. Ate well and basically rejoined the human race. Yes, I still have some joint pain- primarily my R shoulder and R hand at night and I did have a faint night sweat toward the end of the week. But it was SO nice to see who I am without antibiotics and Herxes.

This week, off antibiotics, is important as it is allowing my immune system (and liver) to recover some. I am hoping that these antibiotic breaks will stimulate my immune system to recognize some of the bugs swimming around and get "interested" in "doing something about it." These antibiotic holidays also let me see what symptoms remain- it is clear to me that I still have Babesia (sweats), and of course the Bart and Lyme but I am gaining control of my life! I can now plan and know that during drug holidays I can plan to be more social and reliable. This is huge for a chronic Lyme patient.

Week 2 on Jemsek Protocol

2009-10-21T06:30:00.001-07:00

Week 2 was a little rougher as this week I added in Bactrim DS, 1 1/2 tabs on M,W, and F (in addition to the already pulsed Clindamycin and Azithromycin, IV- see below). In addition I do 1000 mg Artemesinin (Allergy Research) twice daily, M,W, F.

I had a little bit of irritability and moodiness and some R foot pain with spasms- primarily at night - all Bartonella symptoms. My R shoulder pain was also worse-- I gradually increased the Lyrica and Lamictal so that these symptoms were controlled.

I like his philosophy that "you should have some Hex, but it shouldn't be unbearable." These medications (Lamictal and Lyrica) have really helped my emotional sate, sleep and over all pain.

On the days off antibiotics I infuse a liter of Lactated Ringers (LR)- which helps me feel great- for the first time I have more stamina and interest in life! Maybe I am no longer chronically dehydrated and the LR also id helping to keep my body from becoming so acidic and toxic.

I am also doing infrared sauna (Dr J suggestion)- twice weekly. I body brush, do 20 mins elliptical and go for a sauna- then home to a detox bath (1 cup baking soda, 1 cup salt) for 20 mins.

Th and F I add in Flagy which is the worst days- more joint pain, some nausea and fatigue- but nothing so bad. The best part is that after the 2 days of Flagyl I have 9 days off all antibiotics!!

First week with Dr Jemsek's IV Protocol

2009-10-07T11:12:00.000-07:00

I am now working with Dr Joe Jemsek, the infectious disease doctor highlighted in the documentary Under Our Skin. I think he is brilliant and can offer help to those of us with chronic Lyme.

If you read the posts below you will see that he uses pulsed treatments, M,W, and F with drug holidays for 1-2 weeks. I have just started my first week of intravenous and oral treatments and plan to blog about my progress.

Dr J likes all patients to write about their week, every week, to track progress in symptoms. You have to do this in 50 words or less.

My first week was really good- in fact, I can truthfully say that this was my best week since starting treatment 18 months ago.

I started with Lyrica 25 mg for pain and sleep and Lamictal, to help control emotional lability. I am not a drug taker by nature but on the Lyrica/Lamictal combo I slept very well and woke feeling better than usual. On these meds, I still had shoulder pain and joint pain- but it didn't seem to matter as I slept.

After 2 days, I started IV Clindamycin. During the first dose I hadn't eaten much and proceeded to feel very nauseated and had a horrible bitter taste in my mouth. The intravenous Azithromycin that followed made me very sleepy. Despite this after a couple of hours I was up and was well enough to enjoy a family dinner.

Next morning I was careful to eat a full breakfast before any IV's and I had NO nausea with infusions. Still some sedation but slept an hour and was able to get up and function around the house. I even cooked dinner! Best part is NO antibiotics on the next day.

In general on the pulsed therapies I am the very best I have been since beginning treatment 14 months ago.

Finding "the right drug"

2009-10-07T11:08:00.000-07:00

I used to think it was a matter of finding "the drug." I now see treatments as a dance. Multiple drugs need to be used against all 3 bugs (Babs, BArt, and Lyme), in unison, so that the immune system can finally get better- they all 3 drag it down and just when you treat one, another raises its ugly head.

I was certain that my 5 months Mepron/Zothro and 18 months Artemesinin cured my Babesia--- well they didn't. It's in my liver and though I no longer have headaches and vertigo it is dragging me down while trying to treat Bart.

I think the best Bart drug is Levaquin and Dr J is planning to use it IV (which is very nauseating) - but we will pulse it in on M,W, F with drugs for Babesia and Lyme. Rifamipicin and its related cousins are also excellent for Bart. And Bactrim is good for Bart and hits Babs. Most drugs have cross cover coverage.

I really do think that the answer is going to be high doses, multiple drugs pulsed alternate days with drug holidays. I plan to work to develop satellite centers so that such treatments can be available to all. Currently most LLMD's are unable to offer unusual treatments but we can push for research using such therapies.

Please have any doctors interested in being part of research protocols with pulsed therapies, IV or oral, contact me at contact@phulicohanmd.com

Pulsed Antibiotics- The Future for Lyme

2009-10-06T12:02:00.000-07:00

I am working with infectious disease specialist, Dr J (SC) and am excited to share his concept of "pulsed antibiotic therapy" and how he is treating me and hundreds of others, successfully, For the first time in over 1 1/2 years I feel I am getting my life back.

The 3 major players in chronic Lyme are Borrelia (Lyme), Babesia,and Bartonella. Sure we are also teaming with viruses, yeast, Mycoplasma, and other undesirables but he believes that if you can get the big 3 under control you can eventually get the immune system back into a functional state.

According to Dr J these 3 organisms are almost always present in chronic infections and fortunateley they divide slowly-which allows for dosing antibioitics every other day. He has been treating patients this way for the past 5 years with good results. He uses all antibiotics, orally or intravenously, on alternate days- typically M,W, and F.

I am currently doing Clindamycin 900 mg twice daily intravenously M,W,and F with Azithromycin 500mg, also intravenously. In addition I am doing 1000 mg Artemesinin and Mepron (2 tsp) orally twice daily on theses same days. After one week of this, he had me add in (oral)Bactrim DS, 1 1/2 tablets again M,W, F. I also add Flagyl 500 mg twice daily on Th and F (orally). These drugs are treating Babs, Bart and Lyme forms.

On the days when I am not infusing/taking antibiotics he has me infuse one liter of Lactated Ringer's solution which he feels helps buffer the body (help it be less acidic) and "flushes" the organs.

Every 2 weeks he has me take a full week off treatment to see how I am and this (he believes) allows the immune system an opportunity to regain strength. How you do on the week(s) off allows him to get a glimpse of how well the immune system is recovering. This is a technique he used for years in his HIV patients and I think it makes a lot of sense as a physician.

The key to this disease is not to eradicate every last evil bug- rather it is to get the infectious load down low enough so that our immune system can recover and take over its job. Antibiotics are great but if they are poisoning your livers, and suppressing your immune system they can be counter productive.

I believe the reason some of us do not recover is: the 3 big players are not addressed and the immune system is not brought back.

Regarding the first, it is great to test for co-infections but if negative these tests should NOT preclude treatment. All patients with chronic Lyme should be treated for ALL 3 big players (Bart, Babs, and all forms of Lyme). Demand treatment for all 3. Babesia is the hardest to eradicate ie long term Atemesinin is needed (I'll post more on this).

Regarding the second, the immune system should be supported as much as possible, ie transfer factor?, treating for yeast intemittently, taking breaks from antibiotics. If the immune system is not supported you will keep "chasing your tail."

Thus far, I feel the best I have since becoming ill summer 2008. The best part is that I can sort of get my life back- as I know which days I am infusing. He also has some novel ways to deal with herxing and detoxing (see my next post).

My hope is to get other doctors involved in clinical trials with his protocol. I am meeting with a doc next week here in Boston to see what can happen. If you have a doc that may be interested let me know. It would be great to get some other infectious disease docs involved.

It's time for us docs to stop fighting and start communicating and working together!

Juicing and Lyme

2009-08-02T12:53:00.000-07:00

I have been doing a lot of juicing to support my immune system and I think it is helping. I am doing the best that I have since starting treatment- reliable mood, better energy, less sweats and even less joint pain.

I am still using IV Claforan with Penicillin injections once per week, this is covering Lyme and BLO (Bartonella Like Organisms). In addition I am taking Azithromycin Monday through Friday to treat L-forms and Flagyl on weekends to break up cysts.

I juice wheat grass every morning 1-2 oz and then during the day I juice a green drink made up of kale, cucumber, lime, sprouts, and whatever organic greens I feel like (Whole foods will give you free carrot and beet greens if you tell them you have a rabbit and call ahead).

I also still go to Chinatown and see the local acupuncturist MD (who takes insurance) and for Tui Na, (Chinese massage, costs only $40). I am always looking for affordable ways to treat this illness to pass on to you guys.

Great Sllide Show from Burrascano

2009-07-20T07:48:00.000-07:00

Check out the slides form a talk that Dr Burrascano gave last September

http://www.lymepa.org/html/dr__j__burrascano_september_20_0.html

Emotional Seizures

2009-07-18T10:25:00.000-07:00

I have been experiencing mood swings off an on since beginning treatment 11 months ago. I never recognized a pattern or the specific nature of these emotional outbursts but now since beginning intravenous Claforan and weekly Bicillin injections I am seeing that these mood swings are more and more like seizures, in that they come out of the blue, often come with a brief forewarning or ‘aura,” and leave me worn out but not truly depressed.

I was amazed when I recently learned that Dr J (SC) routinely uses the anti-seizure medication Lamictal to help stabilize moods in his Lyme patients.

I will describe what last happened to me last night and how I plan to treat this.

Last month I developed a serum sickness like reaction to my treatment (my liver function tests rose and my WBC fell to very low levels). This was accompanied by severe mood swings and uncontrollable crying/panic/suicidal thoughts/depression. My moods became so unpredictable that I was referred to a neuro-pharmacologist who specializes in mood disorder associated with brain infections/trauma/Lyme disease.

She shared my understanding that mood disorder associated with brain infection or trauma can be due to erratic leaky membranes and electrical instability.

We discussed using Lamictal, but because this medication is associated with a rare skin disorder (more common in children, known as Steven-Johnson syndrome) it must be given in very low doses and requires about 6 weeks to become therapeutic. So we decided to start using low dose Paxil (an anti depressant that is also very good at reducing anxiety).

I began a very low dose (compounded in 1 mg capsules) of only 2-3 mg/day. I had some mild headaches but did feel that my mood was more stable on this.

Last night, my 8-week mark (my second 4 week cycle on IV, and one day after Bicillin injection)- I had a bizarre episode occur. I was in a crowded noisy room that felt overwhelming. I began to feel as though I was out of my body, or watching myself (dissociative reaction, not uncommon in Lyme). Then I felt spacey, and. Fortunately, I took someone with me and began about 20 minutes of uncontrollable crying/panic/overwhelmed/suicidal….I stayed labile for another hour or so. Eventually it passed and I felt myself again albeit tired.

I share this as I now understand that I have been having such reactions intermittently for many months and I believe they represent a seizure like reaction to Lyme/Bart die-off.

My doctor and I plan to continue the low dose Paxil and slowly add in Lamictal to prevent these from recurring.

It has been great to have a doctor added to my team that I can call to when feeling emotionally unstable. I have always been so against the idea of using anti-depressants in the past-but I do feel this has helped me and I wanted to share the idea of using compounded very low dose medications that can be used gradually, while minimizing side effects that would be difficult to discern from die-off reaction.

Hope this helps people.

Pulsed Antibiotics

2009-06-23T13:07:00.001-07:00

Below is an excerpt of an interview from Dr J (SC) a highly respected Lyme literate infectious disease expert. He promotes pulsed therapy- which I am currently doing (IV Claforan for 3 days every 3 days). I am doing better (better energy, mood and less sweats)and it is nice to get breaks off antibiotics to rebuild my liver (using acupuncture and Chinese herbs) and gut(lots of probiotics/goat milk kefir, vitamins and minerals).

Here's the interview:

What are some of the most important clinical observations and treatment recommendations you have made with regard to Lyme Borreliosis Complex?

Dr. J: What I learned a few years ago is that you don't have to treat every day. And with my HIV and infectious disease background, I learned the virtues of combination therapies. When you're dealing with a complex group of infections, there's no one drug that's going to satisfactorily handle the infection unless you're not that sick. It's all about putting your immune system back in charge. And to the extent that you can eliminate the source of the immunosuppression and your immune system

Everyone who's trapped by this illness needs nutritional support, metabolic support, and they need antibiotics. Some people are negative about antibiotics, but you can't evaluate antibiotic therapy in a vacuum or as 'all the same'…that's patently intellectually dishonest. We are, after all, treating multiple, stubborn infections in an immunocompromised host where, by definition, the immune system cannot handle the problem. And our goal is not to see how many days of antibiotics we can administer, but to administer the fewest days needed in order to restore immunologic control. Towards that end, we need to understand the triggers to keep patients out of situations that are going to perpetuate the patient's chronic illness and/or make it unwise to attempt therapy until these destabilizing stressors are reduced, whether the stressor is as basic as a bad support system or involve psychiatric, pain or sleep issues.

In treatment models, I've learned that pulsing makes sense, and I think everyone who's really sick has multiple infections. When I treat the three major infections, which are Borrelia, Bartonella and Babesia, and do that in a certain sequence and in a certain combination, people get better. And I think it's very important for people to go off therapy on an intermittent basis for one or two weeks at a time. Those windows are very important times to see how much immunologic security they have. Patterns develop, and the better the patient is, the longer they can go off drugs. For many years now, we have learned to pulse combination antimicrobial medications in certain patterns, and I have modified our clinical approach from learning the tempo of the disease.

Often you learn more about your patient when they're off treatment than you learn when they are on active treatment. These 'holidays' provide valuable windows for observation and after a time, you learn that cycles of therapy and the way they are sequenced show reproducible patterns of response. You also learn a lot from aspects of the treatment period, whether it's being on treatment, when it's the time to take Flagyl, and certainly the time that they're off treatment is a very important window for you to see how the patient is doing immunologically. And once you learn patterns and understand them, then you know when to intervene and when to back off. One of my patients said, "You're doing a dance with this disease, aren't you?" That's not a bad analogy.

I learned a long time ago that the most common reason for people not to get better is inadequate treatment of co-infections. It's very important to address the co-infections and to do so in an overlapping way, so you're not just treating one thing and then going on to treat something else. I only treat three days a week whether it's oral or IV, and have been doing it this way for at least five years, and exclusively this way for almost three years. And on all my programs, I give a week off of therapy on average every two to four weeks. I don't do it so much at the beginning, but after we get into it, patients get immunologically revved up.

In treating patients at the clinic, we are constantly striving for a balance point in terms of clinical efficacy and manageable toxicity, the latter being an inevitable sidebar to the highly immunogenic and inflammatory lipoprotein storm we see with Borrelia lysis. When the immune system activates, a patient can actually get more toxic, so we have to balance that. It's part of the art of medicine in terms of learning how to balance the toxicity generated and the fact that the patients need to detox. And I prefer to think there's a 'back door' to this illness as regards to the detoxification issues. If the 'back door' is closed, patients may remain unwell for protracted periods. Without question, there are considerable variations in the segment of the population with this illness who are going to be very sick, in terms of the ability to detoxify. This, in fact, may be as critical to outcomes as the infectious load and immunologic/genomic factors. That's the way it was with HIV, too, in a sense.

Confirming Lyme

2009-06-21T10:44:00.001-07:00

At a recent conference the medical director the Igenex medical director recommends doing "primed PCR urine tests if western blot tests are inconclusive. Antibiotics drive the Borrelia into the bladder where they can be detected in the urine. It is also a good clinical trial as you will see if there is any herxing or symptoms while on or immediately after the antibiotics. Be sure to keep a good diary of symptoms- headache, brain fog, fatigue, aches during these days. Your doctor should call Igenex (1-800-832-3200) so you have the correct forms and containers. There are many protocols used some recommend 3 days of collections or 5 days with 3 specimens sent. Here is a typical protocol:

Take Ceftin 500 mg twice daily with Zithromax 250 mg twice daily and collect urine for 5 days. Collect and send 3 separate urine samples during these days to Igenex for PCR tesing.

Igenex actually recommends repeat testing if initial test are inconclusive ie only one specific band is poistive. If you retest be sure to ask your doctor to check for 31kDa box as this will increase specificity. Your doctor must check this off on the back of the requisition paper or it will not be done ( I didn't know about this for 3 years and I'm a doc). 31kDa is highly specific for Lyme and can help clinch the diagnosis in "iffy" cases. If money is an issue and insurance won't cover repeating western blots- just do the urine PCR with antibiotics as it give both a clinical and lab diagnosis.

The Yin and Yang of Lyme

2009-06-16T10:31:00.000-07:00

I have spent my professional life merging East and West and feel that this is an area of Lyme treatment that is unrecognized. Most Chinese medical practitioners claim that antibiotics are not needed and most Western doctors fail to recognize the problems such as blood stagnation, organ dysfunction,and yin and yang imbalance that results from both the infection and from multiple long term antibiotics. I firmly believe that to become well you can and should combine treatments. This is how I treat hormone imbalance and now because of my illness am learning to do so for chronic Lyme.

I have been taking IV Claforan for 3 weeks now and have felt much better…my spirit and energy improved within days of starting treatment. One of the known side effects of Claforan is to lower the blood counts. As I progressed in my therapy I began to have increasing night sweats, uncontrolled tearfulness and sadness and increasing fatigue despite more rest. Most LLMD’s would say, “Great you are herxing.” But what is herxing really?? I understand that Herx reaction is the body’s reaction to dead bacteria/spirochetes but I also recognize that according to Chinese medicine it is blood/yin/Qi deficiency/liver stagnation, etc.

As I felt more unwell my liver function tests began to rise and my white blood cells began to fall. So I went to my Chinese Herbalist in Chinatown (Boston) and asked who the local acupuncturist is. (Doctors will not survive long in Chinatown if they are not successful with patients). Dr W (who takes insurance, so I pay only my $20 copay), has been practicing for over 25 years. I saw him yesterday. He was immediately angered by my state of health. He carefully explained, “your Yin and Yang are so very weak, and out of balance-stop the antibiotics.” (I was infusing during the exam!). He performed acupuncture and prescribed herbs to balance my organs ($17/week, told me to walk every day, sleep by 10pm, eat more vegetables and less meat and do less. I am used to merging modalities and I know that I will (for now) continue the antibiotics but I will also get my yin and yang balanced.

When I returned home my LLMD has left a message to stop antibiotic infusions because the white cell counts were too low. We discussed my theory and she agreed to adding Chinese Herbs and acupuncture to improve my kidney and liver yin, which will help my counts.

I will keep you posted- but no tears since acupuncture and clear happy head this morning. I will also post here the signs and symptoms of yin/blod and Qi deficiency. The symptoms look (and feel) a lot like Herx reactions…night sweats, tears, dizziness, heat intolerance…

I am do plan to transition off IV antibiotics in the upcoming months (hopefully) - they have done me good but I believe they should not be used long term. I will have a Bicillin injection today to prepare for IV withdrawal. I spoke with Dr S (Maryland) who says that he has less relapse when stopping IV using Bicillin injections in the last weeks of IV and then continues Biciillin (often with Omnicef) after the IV is discontinued. While I do this I will continue to get weekly acupuncture and boil my somewhat ghastly tasting herbs to restore my yin, yang and spirit.

I sincerely hope that this is not confusing to people. It is important to repair/restore the body while taking antibiotics and most "Chinatowns" throughout the world have skilled doctors. I trained in Australia with a Chinese doctor, in Melbourne’s Chinatown. The herbs are ancient and universal and they (the Chinese) have been treating spirochetes (Syphilis) for centuries. We have much to learn from them, and vice versa

I also believe that one does not have to spend a life’s saving to be well. I have lived with Lyme disease most of my life- lived it fully using combined treatments and I plan to live a long full life beyond today in the same way.

Life Is Good Intravenously

2009-05-30T13:27:00.000-07:00

Okay, I never in my wildest dreams thought that I would end up with a central PICC line getting IV Claforan but I am, and I do, and I am happy to report that I am at last feeling like my old self. I wake up with enthusiasm for life. I have energy to do things. My night sweats are almost completely gone. I am experiencing some flare up of dental sensitivities and shoulder pain and when treatments began I had numbness and leg pains, but nothing too bad.

Getting the intravenous line was interesting. I could not go to the local community hospital as they had recently revoked hospital privileges for a physician referring patients for PICC lines to treat chronic Lyme. This is the same hospital who's infectious disease director had informed me that he did not believe in chronic Lyme.

So I went to another hospital 5 miles away. Fortunately this hospital was Lyme friendly. The staff were understanding and accustomed to seeing Lyme patients for PICC lines. It was so nice to be treated like a normal patient, to have people interested in my symptoms and what treatments I had been doing. It was amazing to feel "cared for."

One of my hospital nurses mentioned that she had had Lyme, but had been "treated." When I asked her if she was all better she mentioned that since her infection she had suffered from anxiety and trigeminal neuralgia that was not improving. When she saw that I was being treated for trigeminal neuralgia from Bartonella she took information to get tested again.

The visiting nurses report to me that approximately 1/2 of their IV patients are Lyme patients.

Short term Intravenous for Bartonella

2009-05-21T09:32:00.000-07:00

After 5-6 weeks of Rifampicin and doxycycline and Azithromycin, much improved but not fully better. Symptoms that have improved: brain fog, memory, ambition, mood, shoulder pain and dental sensitivities. Initially all of these symptoms worsened but now are better than before Bart treatment. I have been more funcional from 10 am to 3 pm- but the nights are still horrible.... night sweats and cold chills with joint pain and a feeling of being poisoned. My mood had been great on Rifampicin but after doxycycline was added it gradually worsened. This is the second time that doxycycline has caused severe depression in me and when I looked at the literature there are clear reports of doxycycline-induced depression and psychosis.

I had (phone) consult with Dr S and he has advised that I do 4-6 weeks of IV Claforan, in addition to Azithromycin Monday through Friday and Flagyl on the weekends. He feels most of my symptoms are Bartonella and Claforan is much better for Bartonella than other IV drugs. He said the fact that I am having the sweats within hours of the Rifampicin and the hypersensitivities in my nerves (teeth) and mood variablity point to Bartonella. He is seeing improvements in patients with Bartonella symptoms with this protocol......I firmly believe most of don't get better because of untreated co-infections- particularly Bartonella.

I am having my line put tomorrow. I will continue to do Zhang herbs and my homeopathics. He also recommends Transfer factor which I am adding- will keep you posted.......ps I never thought I would do an intravenous but feel like it's time, for a short period.

Morning Blues

2009-05-11T05:24:00.000-07:00

So here is the morning dilemma for most of us. We are on treatments- herbal, antibiotics, supplements. We are doing better i.e. we can think, our headaches are not keeping us in bed unable to speak, we can eat though most foods are joyless, we can tolerate some noise and light, we are doing okay. Nights are still hellish episodes of heat and cold and sweats and aches. Your family looks at you in the morning, gauging where you are, how you are. Should they ask? Should they offer? So you say it, "I'm okay." What does that mean? Will you still get some help? Will they understand that you still feel as though you are fighting a flu with a touch of madness? Do you take Motrin or Nux vomica, up your vitamins C, or try that inspirational tape that helped so much 3 months ago? Do you go online to see who is posting a new hope or will that just depress you? Are you fighting your daughter's cold or is it the Monday blues? Is it a one year anniversary of treatment or is it the middle of a new protocol designed to kill cysts and 2 co-infections all in one fell swoop. Do you need an IV or a vacation? You are not bad, but you are not great. The weird thing is that if I can fight and power through and not think too much today will be okay. My mornings are like this.

Catching a Cold: A Good Sign?

2009-05-09T09:19:00.000-07:00

I was told (and experienced) that when you are very sick (with Lyme/Co-infections) your body will not recognize most viruses. The up side of this is that most people with chronic lyme (and chronic fatigue for that matter) do not catch colds and flus. Their immune system is too dysfunctional and overwhelmed to bother recognizing (trite) viral infections.

I view Lyme as a disease with layers. Until you treat Babesiosis and Bartonella you cannot begin to really rid the body of Lyme. And, until Lyme and Co's are treated, you can not get at Mycoplasma, and other chronic viruses harboring inside your cells/tissues.

Many people have chronic infections but if they are in good health there is no problem. For instance, Chicken Pox goes dormant, and only if you are under stress, aging, or worn down, will you get Shingles. Everyone accepts that. It is no surprise then that as you treat your Lyme and Co's you may not get fully better because of lingering (reactivated) EBV (Epstein Barr), HHV (herpes), CMV (Cytomegalovirus), or other viruses.... This is why many of us don't get fully better.

I do believe viruses are treatable but you can not begin to treat them until your Lyme/Co's are under control/gone. There are antivirals (not that great from my experience, but some people do get better with them. There are many herbal/homeopathic soulutions for viruses- Zhang uses Olive Leaf, there are many more (Berberine, Coptis, Clove Oil, Pleomorphics ....) And of course on top of all of this you must detox, (support the liver), heal the gut, and control (autoimmune) inflammations......It is a (solvable) puzzle, but no quick fixes.

So you can see why I was sort of excited when I finally caught a cold (first in 2 years), but unfortunately that unleashed my Mycoplasma, that I am now mopping up. I am however doing better now...nights are always worse -- why is that??

I Feel Normal

2009-05-08T08:46:00.000-07:00

I feel normal today. This is simply amazing. Not sure why. Was it the gluten-free bread or a week of rest? Was it crying enough, forgiving enough, asserting enough, killing enough bacteria and spirochetes? What is it that makes us better one day only to drop away from the grace of normalcy tomorrow? Is getting better slowly more functioning days, coming on the heels of feeling as if I am relapsing into Babesial migraines. Is it the homeopathy, yoga, or doing nothing but watching Oprah discuss infidelity and working girls? Some days I am quite certain that I know how to treat chronic Lyme. I feel smarter than my doctors, sharper than my therapist. I am certain that it is the current antibiotic or supplement that I discovered in the vitamin shoppe next to immune boosters.

My mother-in-law warns me that I am becoming obsessed with my illness- though she readily admits that she could possibly do the same. We do. We obsess. It is hard to stay away from forums and chat rooms, the articles from 1994 that discuss Cerebral malaria,"a little like Neuro-Babesiosis." I believe the tick that bit us made us need to seek out other infected people, share symptoms and remedies, critique our doctors and politicians, and read about anything to do with tick-bite illness.

I feel normal but I still can't eat food that is not warm, use my right shoulder fully or book a client. My normal is not reliable. I have no way of knowing how long it will last or how good it will stay. I can not plan to go to Greece or volunteer regularly at my daughter's school. My normal is so unreliably changing, it is a secret. I whisper it to myself. "I feel okay today." Yes I sweated and ached in the night but today I feel happy, good, strong. I only tell the people that I can trust as I am afraid to lose the little bit of sympathy, help, understanding that I do get. I look so good, after all.

Not Sure Who I am Any More

2009-05-07T08:10:00.000-07:00

I am not fully sure who I am any more. This could be Lyme talking or it could be me, recovering from a lifetime of doing everything for everyone else. Lyme could be unleashing the real me. The independent self-indulgent-pleasure-seeking-don’t-give-a-damn –about-anyone-else-me.

I have been sick and not required to do anything for so many months that I can no longer discern duty from desire. From rest and sloth, from greedy desires to stay in bed and eat bonbons or self-discovery at the age of 52.

I have been so very good. I have literally saved many lives-too many to even count. I have lived on 4 continents, completed 2 internships, tested with 7 medical boards, raised 6 children, married twice, cleaned and lived in dozens of homes, cooked millions of meals, with endless pots of macaroni and rice pilaf, listened to thousands of women tell me about their menstrual cycles and lack of sleep, watched hundreds of soccer game in the mostly bitter cold northeast, picked up noisy carpools, listened to girlfriend’s infidelities, read books I didn’t’ really even like for book clubs I didn’t enjoy enough. I think that I am done. I hope and I pray that I am done. Done appeasing, applauding, and wondering. I am tired out. Maybe that’s why I got Lyme. Like all those self-helpers out there say, “You create what you need.” Or “you get what you deserve “You plant the seeds of your bounty”. ….or what ever the saying is for what I feel.

I am sick of swallowing pills and waiting to see how many hours until something arises- like nausea or headaches or crying jags. I am sick of moping and wondering when it will end; what I should be doing and why I am not doing things better, quicker, fuller, happier.

I am sick of driving to doctors and hoping for some new improved way of thinking, a clue about how my body is really doing. Is the battle being won, or am I at Waterloo, or the Battle of the Bulge? Is it the Revolutionary War or the Civil War or The War of the Worlds- that never really happened except to a few dopes who happened to listen to the radio at the wrong time. They didn’t’ hear the preamble, the warning that this was only a story, an amusement, or a test,…nothing but a test.

Isn’t that what it feels like after all? I mean I have a disease that doesn’t exist to most, that causes doctors to live in fear of losing their license to treat you. That people don’t get. A disease that has countless infections that don’t test positive. A disease where if you test positive it is a good sign because at least you are mounting a response, unlike the unlucky f..ers who just feel like sh..t and don’t test positive to anything and are told to take more Celexa, or Ambilfy.

I went to a conference with a Lyme expert and he said if you had a science fiction movie disease it would be Lyme. It (Lyme) can do anything. It can travel through tissues faster than blood, it could go anywhere- do anything. Make you numb, give you toothaches, swell your joints and then just as rapidly, unswell them. It can make you think you are unlovable, cloud the smartest brain and ring eardrums while you sleep. It can make you cry in the middle of the night when you least expect tears. He said that it(Lyme) can tease your immune system- stick its tongue out at your blood cells and then within seconds join its head to its toes and flip inside out so your white blood cells never even saw it. Even your cells are confused about what is happening around it. Am I infected or healthy? What is going on?

Add to this some germs that behave like malaria. Live happily inside your cells only to burst out, unannouced when it pleases. An unwelcome guest inside your brain. Named like a cute storybook character, Babesia. It sounds huggable and sweet, like the cartoon deer that lost its mother too young. Despite its sweet label , it gives you sweats and bone breaking chills and headaches that feel like you have entered a Bosch painting of Hell. It makes you dizzy and irritable. It makes you think of ways want to kill noisy children, machines that whine, or people who speak loudly. It makes you fell dizzy, like an unsettled boat- one minute you are about to fall in murky water.

Add to this a bacteria that sounds like an Italian pastry or a special pasta dish. The waiter would roll the words “Bartonella” off his tongue and it might sound tasty. It is perhaps the cleverest of all infections because it so very subtle. You and your doctor do not even think of testing for it. And why bother, as it is nearly impossible to test for, and even harder to treat effectively. It is so subtle it just makes you feel cranky and as if you woke up on the wrong side of the bed. A little sorry for yourself. It is indeed self-indulgent and slowly it whittles away at your self esteem and convinces you that in fact you are unlovable. It can make you believe every bully that you have internalized inside your brain. Every insult thrown at you as a child or a full blooded adult. Ahh, Bartonella perhaps the cruelest infection that give you stretch marks, burns your bones and toes.

My Bartonella Symptoms

2009-04-29T12:56:00.000-07:00

Okay, I started Rifampicin for my Bartonella and it was a wild and crazy ride.

No, my tests for Bartonella were not positive and if I have learned anything about Tick disease is that the tests are unreliable, expensive and pretty much a waste of time. I firmly believe that the reason that most people do not fully recover from Lyme is because co-infections, particularly Bartonella is not treated. Anyone with with Lyme should be treated for Bartonella first or early on in their treatment. Why? Because the mood disorder associated with it is so intense and damaging and can interfere with other treatments. Many drugs and herbs can be used to treat Bartonella (another blog to follow- I promise). In the textbooks and forums people talk about the symptoms of Bartonella. Well I want to tell the world what my experience of Bartonella is like.

Depression is major symptom. Not just "I feel down,"... not PMS "I could kill you for cutting me off" depression..It is, " I hate my life, nobody loves me, I can't do this anymore, I want to die depression".......it is associated with crying and teeth chattering and end of life feelings. It can have you cry in your sleep. It is always worse in the night and early mornings, but it could be anytime. It is uncontrolled tears. I could cry buying cereal, or cooking dinner. It is draining. It makes you feel isolated. You feel that you have become another species- not quite human. dribbling, down and out, subhuman, needy and without hope. You have an incessant need and desire to be loved and cared for. You need someone to understand, and they don't . It is the end of the world even though everything is okay sort of feeling.

Heat and sweats are common and intense and no, it is not your hormones!! It is sometimes cold and then suddenly very hot, like a microwave went off inside of you - your hands and feet are cold while you feel like you are being cooked from the inside out. Sweat erupts from comes your chest and groin and face. (I do not get rashes with my heat but the other person who started this blog does - she gets the classic rashes that look like stretch marks or bruises. Sometime she sends me photos of these. I just get heat and sweats. You can also sweat from Babesia and Mycoplasma.)

Burning Pains can occur anywhere- I had it primarily in my elbows- it hurt to put my arms on a flat surface. Some people get these symptoms in the their feet/shins/legs/toes/soles of feet.

Headache can be bad and pounding and at the top of your head (Babesial headaches are more in the temples/ Mycoplasma are more in the sinuses). Nux Vomica high dose (G1 from Germany) helped my headaches.

I did improve gradually after a few days. But when I got a flu and then a cough and I had to start treatment for Mycoplasma (Doxycycline and Azithromycin) the mood symptoms recurred. My mood has once again improved. I am learning to ask for more help and loving support. I am learning not to waste my emotional or physical time on people who don't care or don't know how to show it.

2009-03-22T08:54:00.000-07:00

I met with Dr Zhang last week and I think he is an amazing man/physician/ herbalist with much promise to chronic sufferers. We spent 2 hours talking and I have already felt some improvement in my elbow neuritis/dental neuralgias/nausea/ and energy.

Let me share some of what I learned. As I think this is key to full recovery from this disease.

Lyme is an infectious disease but it is much more as most of you realize. There is an autoimmune piece which must be addressed and is not addressed by using antibiotics alone. As you kill the various infections, an antibody response develops, with immune complexes (bugs attached to antibodies) that deposit in the membranes of your nerves and vessels. These immune complexes cause inflammation and autoimmune disease ensues. Just like what occurs in Lupus or Rheumatoid arthritis, Sjogren's.... This process is of course different for everyone depending on their underlying immune status and genetic tendencies- hence the wide variablity of symptoms. Some people have an easy ride, others difficult, probably due to ongoing untreated co-infections and more severe autoimmune response. Autoimmune disease accounts for so many Lyme symptoms such as neuritius, neuropathy, muscle pain, and vasculitis (inflammation of the blood vessels) leading to headache/depression/mental fog/Sjogren's/ Raynaud's...).

In addition to this immune problem there is what the Chinese call "Blood Stagnation"-- it is sometimes recognized in the West as hypercoaguable blood with abnormal clotting studies- but often the clotting studies are "normal". Most chronic infections and illness is accompanied by blood stagnation, causing symptoms such as nausea, breast pain, hormone imbalance, irritabiltiy, headache, depression......both the autoimmune response and the blood stagnation much be addressed. It is not enough to simply kill organisms in the blood.

In addition to these principles antibiotic therapy, though vital, is limited. Antibiotics are large molecules which can not penetrate inside of cysts and tissues. To treat these areas you must use treatments capable of being taken up in the tissues (Samento, Una de Gato, Flagyl, etc) ....but what I found unique about Zhang's protocol is that he has isolated the active ingredients of some herbs, such as Artemesinin, that is a very tiny molecule capable of passing into tissues and cysts (his artemsiae remedy is more potent than artemesin for this reason. This is very exciting and a great breakthrough in Lyme disease treatment.

To summarize I feel you need: antibiotics to kill organisms, with immune support (vitamin D3, K2, mushrooms, ..), treatments for immune complex disease (Dr Zhang has a formula perhaps others know of others) and treatment of blood stagnation (the Chinese do this the best I feel).

Hope this makes some sense and gives you hope. I firmly believe that Lyme disease is curable. FYI The treatments for AIDS are derived from the Chinese Cucumber Plant, (Dr Zhang also pioneered much work in that field)......

LYME / CO-INFECTIONS & the things you need to know to work thru your recovery

2009-03-20T15:47:00.000-07:00

Many of you have emailed asking how I have been treating my Lyme disease. Lyme is the fastest growing infectious disease in the U.S. and most doctors do not diagnose or treat it properly. If you are not suffering from, or interested in Lyme please skip this blog but pass it on to whomever may be suffering. I hope this will help anyone struggling with this illness.

I am not a Lyme expert, but I found doctors who are and I am doing really well. Lyme disease is curable. Here is what has been working for me.

* Testing for Coinfections. Most people with Lyme also have other infections, called co-infections. Some people never fully recover from Lyme even after their initial infection is succesfully treated because they have untreated/undiagnosed coinfections. One coinfection (that I was diagnosed with) is Babesia. Babesiosis is protozoal infection similar to Malaria that infects the brain. The only laboratory that found my Babesiosis was Igenex Labs (listed in my book). Some say that “everyone tests positive at Igenex.” This is not so. I have tested many chronic fatigue patients over the years for Lyme with Igenex and many test negative. It is important to understand that negative tests for Lyme or co-infections is not always accurate. There are many reasons for this. In the case of Lyme, the infection could be in a form that is invisible to the immune system (L form or cysts, see below). False negative tests can occur if a particular bacterial strain was not tested or if a weakened immune system is unable to form an antibody response to the infection. Symptoms are the most important way to determine what co-infections are present. Some infections are not obvious initially, but as treatment progresses, symptoms change, and coinfections become more obvious. As I complete my Babesial treatments I now suspect that I have Bartonella. My Bartonella tests thus far are negative but as symptoms emerge and persist (neuralgia, persisting fatigue, nausea/malaise), I suspect this coinfection and plan to treat for it. I am also doing further testing for it, (Endothelial Cell Growth Factor Test).

* Treating Coinfections. My Babesisos was treated with Mepron, Azithromycin and herbs (below). You must treat Babesisos for at least 5 months- if your doctor says otherwise get another opinion. It must be treated for the full life of a red blood cell (4 months) otherwise the infection will recur. Studies have shown that treatments lasting 5 months had less failures. After 3 to 4 months headaches, and noise/light sensitivity, chills and sweats improved. Using a high dose homeopathic (LM or Q dosing of Nux Vomica) with a skilled homeopath finally got rid of my headaches. I would not recommend doing a homeopathic treatment early on as homeopathy can flare a symptom before it improves it, and that can be confusing. Make sure your homeopath is very experienced.

* Antibiotics. I used Doxyclycline initially for Lyme, which is a great treatment, but I became very depressed on this. Because of mood problems my Doxycycline was switched to Omnicef (300 mg twice daily) and after 1 month, Probencid was added to further increase Omnicef levels. Antibiotics drive the Lyme infection from the blood into the tissues, where it persists in a cyst or L form. These forms are not detected by the immune system, so blood tests may be negative, although the infection remains in the tissues. For this reason throughout my treatment I have used Una de Gato (Cat’s Claw) because it treats the cyst/L forms. Flagyl also treats cysts, so I currently “pulse” this in every 3 weeks for 2 weeks. In addition, I use two herbs, Artemesin (initially I used the less potent Artemesia) and Enula, (from Nutramedix), to treat Babesia and support immune function. Herbal remedies cause die-off symptoms similar to antibiotics (below) so, if you add these in, do so gradually and of course under your doctor’s supervision.

* Die-off. As infections are treated, the body reacts to the dead bacteria/protozoa and the symptoms from this are called “die-off.” Die-off is a bitch. Everyone experiences it differently, but die-off makes the treatment of this disease the most difficult part of this disease. My die-off symptoms were depression, severe unrelenting headaches, numbness, fatigue, brain-fog (literally feeling as if your head is stuffed with cotton), confusion, poor name recall, memory loss, executive function problems (missed appointments, unable to add columns of numbers, forgetting to pick up kids, difficulty organizing/prioritizing/sometimes getting lost in the neighborhood, vertigo, and ADD with difficulty keeping organized or on task), soaking sweats,freezing cold, and joint pains. Cholestyramine (see below) is a prescription medication that helped reduce my die-off symptoms. Supplements that also helped were Pectasol from Douglas (a natural form of cholestyramine - I use both), and Pinella extract (an herbal “brain clearing extract” from Nutramedix). Doing less, asking for help, asking for reminders from friends and family, keeping lists and pre-planning my days (best done the night before so that I could problem shoot and ask for help with driving, shopping, etc) were key.

* Mood. Mood symptoms were perhaps the worst symptom for me. Many people experience depression from long term tetracycline antibiotics (Doxycycline, Minocycline, Biaxin). Switching to Omnicef helped my mood. Lithium Orotate (4.8 mg) 2 pills three times/day (this is not the same as lithium carbonate used in bipolar illness) was also helpful. During a workshop with Dr Christiane Northrup I was introduced to a world wide healing practice, Bruno Groening Circle of friends, which involves meditation to music (downloaded from the web). This practice has been dramatically helpful both physically and mentally.

* Sleep. Adequate rest is critical to treat and recover from Lyme. Unfortunately, die-off symptoms and neurotoxins can interfere with sleep. I found using L-Tryptophan 500mg (4 capsules on empty stomach) one hour before bed and 9 to 15 mg melatonin worked very well. (Yes, this is a high melatonin dose, but melatonin is a powerful brain antioxidant which helps protect the brain from neurotoxins) Regular rest and naps are essential to recover.

* Cholestyramine. This prescription medication is a resin that is normally used to bind fat. Fortunately for Lyme sufferers, it also binds neurotoxins and can be very helpful to limit neurologic symptoms. There are a few things to know about it. Most doctors prescribe it in packets or yellow powder that contain dyes and substitute sugars not well tolerated by Lyme patients. As a result, many patients give up on it, which is a shame as I found this remedy very helpful to reduce die-off symptoms. Be sure to ask for Generic cholestyramine in a tub. It is a white, pleasant tasting powder. Two pharmacists had trouble finding this for me- if you have trouble, call Pierce Apothecary (617-566-4080) and they can order it for you with your doctor’s prescription. To avoid constipation while using it, take 4 to 6 tablespoons of ground flax seeds. Cholestyramine must be taken between meals and at least 3 hrs away from Mepron, because it will absorb your medications and food. Good times to take this is during the night if you wake up, and late afternoon 2-3 hours before dinner. It can deplete certain minerals so I now take iodine, potassium , vitamin K2 and vitamin D3 in addition to magnesium glycinate and calcium