I'm Well and What Does That Mean?

Hey guys, sorry but time flies in the Lyme stratospheres. Many have contacted me through my website, phulicohanmd.com, wondering what's been happening with me. If you read recent blogs on the site you will see that I am well. But what does "well" mean? For me my current state of well is : normal immune and liver blood tests, NO antibiotics since July 2011, nearly off of all seizure medications, sleeping through the night, and having full days out of bed. I also have a completely normal neurologic exam for the first time in 4 years. There are some caveats that I will be blogging about in the future, such as Post Lyme joint pain (right shoulder), autoimmune issues (thyroid, but getting better) and PTSD, Post Traumatic Stress Disorder. How did I get here? Serious detox, (intravenously, orally and transdermally), supporting hormones and metabolic pathways, (methylation and other detox pathways), and neurotransmitter balance. I would not be here without having other supports like physical therapy, constitutional homeopathy, relaxation yoga (Svaroopam yoga), Family systems therapy, to understand my hard life lessons like asking for what I need, having healthier boundaries with friends, families, and the public at large, and not overdoing things and running around in a race to nowhere.

Hormone Advice for Lymies on Facebook

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

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

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!!!!!!!!

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

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

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.