THE IOM Lyme meeting

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!

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??

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

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

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?

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

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)

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!)

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

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

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!