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Who I used to be.

As an RN in Critical Care most of my career, I became a Nursing Supervisor of a VA in NY from 1984-1988. I moved to Florida and became an IV therapy nurse for three home health companies, becoming an IV Supervisor in one. We moved and I worked as a Critical Care nurse in a local private hospital and was utilized in an undercover probe into their Critical Care unit. I then came back to the VA and was promoted to Nurse Manager of the local MICU. I took secret pride because I was able to calculate complicated drip rates in my head in those days before Pharmacists took over that task.

My permanent SSDI disability was given based on their own physician finding that I probably had a closed-head injury in the 1989 car crash. I was rear-ended by a druggie doing 60 miles per hour when I was stopped at a red light , resulting in my trunk and rear seats hitting my seat. Their testing was more extensive than usual because I had overheard the tests and responses given to the previous applicant. While I have no doubt in its validity, I do have difficulty in believing that my diminished mental faculties started in ‘89. I also don’t believe my problems are secondary to aging, but I cannot deny that the “brainfog” associated with Fibromyalgia began then and its subsequent pain eventually caused me to lose my Nurse Manager role in 1992 and take an early retirement in 1994 - a relief to everyone.

I started with computers while working for Military Intelligence in 1963 where I was taught to write programs. When I moved close to IBM, I had to make a decision. Instead of knocking on their door, I earned my RN degree. Because of my staying up with programming, I owned computers starting as soon as they were available for home use in the early 80’s. While a VA Supervisor, I represented the VA’s Northeast region to attend the first national VA conference on “Computers in Nursing” in 1984.

I achieved several upper level accreditations in Critical Care and other specialties. It is theorized that I suffered my tick bite in 1985 since that’s when I had the “ringworm” rash. Two years after that but before matriculating in my BA program, I successfully fought the VA Administration for a grade increase formerly only given to RNs with Master Degrees and to new MDs. I was also a co-author of a MS thesis that same year.

Long before there were online colleges, I successfully challenged the BA program, completing the required courses in less then a year. With only a 3 day clinical left to complete the program, I had to withdraw due to the FM symptoms.

As Nurse Manager in 1991, by bringing in my own personal PC, I computerized every thing possible. By researching the daily incidents over the previous year, I proved that Critical Care units could be considered negligent by not having even numbers of personnel on duty throughout the 24 hours. Despite the proof, Administration rebelled at first, citing nurses would leave if they all had to rotate to the night shift. However, in the testing I was allowed to do for a year, everyone readily did it, no one left, and the permanent night shift nurses applauded having sufficient staff. And the nighttime incidents decreased in numbers and severity. Of course, personal requests were granted when possible, but by using computerized scheduling (never before done), I was able to insure that everyone was treated fairly.

Because of the changes and the documentation (made easier by using the computer), for the very first time that MICU earned its JACHO accreditation on the first visit.

After being demoted in 1992 (because the FM symptoms encroaching on my mental abilities and its pain causing severe sleep problems), I represented the local VA to be trained by the CDC as an STD/AIDS information provider. In that role, not only did I teach at-risk patients, I also presented to the Nursing and Administration staffs.

After retiring in 1994, I worked per diem for three home-health companies and after becoming an IV Therapy Supervisor in one of them, I then started my own company. I only quit working at all after I was rear-ended again in 1996. Although it was a minor accident, my FM symptoms dramatically worsened.

In 1997, I was selected as the new “President” of our local CFS/FM Support Group. We enlarged to over 300 members, I sent out monthly newsletters, filled with research and protocols of the time and increased the numbers of meetings and added locations. For the first time, speakers were scheduled and I provided a monthly lecture.

Some members asked me to accompany them to their doctors appointments since they felt they weren’t being heard correctly and that evolved into my earning small sums as a Nurse Advocate. The support group eventually dissolved after almost everyone was diagnosed with Lyme disease and began getting better with treatments. I now provide telephonic support to Lyme patients, providing referrals and a listening ear.

Now I have trouble dressing and undressing myself, seldom speak with clarity and often make inappropriate comments. I have synovial joint pain when I relapse. I recently went through a cardiac workup because of my feet swelling so much that Lasix could barely control it. And I take narcotics for my cervical, thoracic and lumbar-sacral pain. I have a compressed fracture from a fall in 2003 that caused bilateral sciatica.

I recently resumed Biaxin because of the joint pain and was absolutely stunned to find my feet no longer swell so badly and my spinal pain was diminished by about half! I never connected the dots before.

Brainfog

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Brainfog and its Significance

©Marilyn Kerr RN 1997-2009

One of the first things that makes us realize that there is something wrong with us is the inability to perform intellectually like we once did. We seemingly accept the increasing pain, the muscles spasms, the insomnia, but when we keep forgetting our own phone number, red flags go up.

We lose things - misplace others - on a route we know, we get lost - we forget where we're going - shopping lists lose their importance because we keep forgetting to bring them - we lose our car in parking lots time and time again - we come home from shopping and realize we bought the exact same things the day before. We forget friends' names. We stop in mid-conversation because we've forgotten what we were talking about. We start using gadgets and date books in order to keep track of our normal daily to-do list. If we handle our own checkbook, we gradually have more and more trouble with it. Even taking a shower is a major effort because we don't remember whether we've rinsed the shampoo out of our hair - we lose the washcloth - we drop everything - we forget whether we rinsed all those hard-to-reach areas. What were once functions that we handled without thought, we now need to consciously review every aspect of the process before it occurs.

We laugh about it. We learn to "cover" the errors with laughter. However, we're embarrassed and silently start questioning our own sanity. We worry about brain tumors and Alzheimer's because we know the problem is far more extensive than other people are seeing. As Janet, a newsgroup member said, "I can no longer rely on me!" (Used with permission.)

If we tell our doctor about our problems, we are often easily placated by the doctor's words. "Everybody starts having trouble as they get older." "No, you don't have Alzheimer's - just FMS." "Oh, you're just depressed."

We take comfort from such dismissals. We really don't want to believe that something is really wrong with our brain.

So we joke about it with each other - further dismissing its importance. Someone once said, "If it wasn't for brainfog, I wouldn't get any exercise!"

However, something is wrong. This is not the everyday forgetfulness that everyone experiences from time to time. This is a 24 hour, seven day-a-week continual struggle to appear and act normally. It's been proven by SPECT and PET scans of the brain. It really IS all in our heads - and it's real.

In this location were two SPECT scans from Dr. Komoroff's research comparing CFS brains to those of AIDS dementia patients, and with bipolar patients done in 1997. One was of a CFS brain showing fair blood perfusion; the second was of the same brain after some exercise which showed greatly diminished blood pefusion

It seemingly proved that execise was detrimental for CFS patients.

Unfortunately, the full extent of our brainfog may not be known until a moment of clarity. That moment may be as simple as finding your "lost" glasses on the end of your nose, or as complicated as finding out years later that you made a stupid little mistake when you filed your taxes.

What part of the brain controls all these things? Most often cited is the right temporal lobe. In plainer English, that's the section in the area of the right temple.

Here's what our doctors are saying:

Dr. M. Yunus: Cerebral blood flow imaging by SPECT (single photon emission computerized tomography) and PET (positron emission tomography), as well as topographic brain mapping with evoked responses using BEAM (brain electrical activity mapping) have been reported to be abnormal in a large majority of patients with CFS, showing a pattern different from normal controls and those with depression. Findings of the above imaging and topographic tests suggest an abnormality of several anatomic regions of the brain in CFS, including the temporal lobe, prefrontal cortex, and limbic structures (hippocampus, amygdala and cyngulate gyrus), perhaps because of neurohormonal dysfunctions. Abnormalities by magnetic resonance imaging (i.e., areas of high signal intensity) have also been described in CFS, but their significance needs to be determined by further controlled studies. Results of SPECT, PET, BEAM or MRI studies specifically in FMS have not been reported, but a good number of patients with CFS who had these tests carried out with abnormal results also had fibromyalgia.

Excerpted from "Chronic Fatigue Syndrome and Fibromyalgia Syndrome: Similarities and Differences" by Muhammad B. Yunus, MD, University of Illinois College of Medicine at Peoria, Peoria, Illinois

Dr. Samuels: But we're talking about CFIDS or chronic dysfunctional diseases; you can span every physiological system in the body. The SPECT scan on the brain shows flow and function. If the temporal lobes are mismatched, you can be sure there will be trouble with memory, recall and concentration. If the frontal lobes are poorly lit, you will see depression.

Excerpted from Dr. Samuels Speaks

Dr. Seastrunk: Why does brain injury becomes a factor years later? CFS is not a psychological illness but is physical with psychological overlays such as stress. Brain dysfunction is associated with abnormal behavior. Dr. Seastrunk developed a questionnaire, called the organic evaluator, for his patients that includes questions involving abnormal olfactory hallucinations (smells and tastes that aren't there); visual distortions (colors, spots, sparkles in outer portion of visual field indicates temporal lobe is injured); oscillopsia (vibration or oscillation of visual field); unable to understand when people are talking to you (left temporal lobe dysfunction); wrong word is used during conversation or go blank in the middle of the sentence; auditory hallucinations (hear noises, clicks, or someone calling your name while the television is on or while taking a shower or using a hair dryer); dizziness (temporal lobe dysfunction); and gastrointestinal dysfunction. Ninety-five percent of the CFS/MCS patients who take Dr. Seastunk's questionnaire have demonstrable brain pathology.

Cognitive dysfunction is a right temporal lobe phenomena. Multiple mood swings, trouble sleeping are all temporal lobe abnormalities.

Temporal lobe is responsible for understanding what we hear, retrieving and restoring our memories even though the patient may feel they have difficulty with their memory. The problem is actually the retrieval of this information. The card catalog is there but the PWC can't find the right word. Not being able to find the word or you forget what you are going to do, or blocking, is a left temporal lobe phenomena.

Thirty percent of people with panic disorder have focal brain injury as a cause according to Dr. Seastrunk's tests.

Deja Vu, the feeling of having been there before, is a temporal phenomena. Jamais Vu, the feeling of being lost while driving your usual way home, is also more commonly explained as when a person momentarily doesn't recognize a word, person, or place that he/she already knows is a temporal lobe phenomena (the temporal lobe has fired).

Migraine or migraine equivalents may also be a result of brain injury.

Excerpted from a lecture by Dr. Jay Seastrunk, Psychiatrist- 6/1/97 CFIDS Conference:

Dr. Goldberg: What is causing the basal-constriction in the cerebral arteries? With a cold, you will feel spacey, foggy, tired, yet a cold is a virus that doesn't go to the brain. While fighting the virus, the immune system releases cytokines and neuropolypeptides that shutdown blood flow. This has come out of good conferences in Europe attended by 10 or 11 laureates in the room and is now a well-accepted physiologic explanation. This is a normal process our bodies go through when we have a cold. With CFS, our bodies are doing this all the time inappropriately.

Excerpted from a lecture by Dr. Michael Goldberg, MD at the 6/1/97 CFIDS Conference:

Dr. Goldstein: CFS patients are prone to overestimate their cognitive abilities. Their making of new memories is extremely fragile and disrupted by proactive interference. They do not benefit from memory cues. The making of new memories is easily disturbed by increasing the amount of information presented.

Excerpted from "Chronic Fatigue Syndromes: The Limbic Hypothesis." Dr. Jay Goldstein, 1993:


Why do we get brainfog? What causes it? What part of our disease creates this cognitive dysfunction? The following is a review of some of the major components of it.

Leaky Gut Syndrome: "In addition to the creation of food allergies by the leaky gut, the bloodstream is invaded by bacteria, fungi and parasites that, in the healthy state, would not penetrate the protective barrier of the gut. These microbes and their toxins, if present in large enough amounts, can overwhelm the liver's ability to detoxify. This results in symptoms such as confusion, memory loss, brain fog." Dr. Zoltan Rona, Toronto, Ontario

Immune Dysfunction: "The evidence suggests a reciprocal relationship of the immune and sleep-wake systems. Interference either with the immune system (e.g. by a viral agent or by cytokines such as alpha-interferon or Interleukin 2) or with the sleeping-waking brain system (e.g. by sleep deprivation) has effects on the other system and will be accompanied by the symptoms of the chronic fatigue syndrome." "Fibromyalgia, sleep disorder and chronic fatigue syndrome." 1993 Moldofsky H

Viral: "Virally infected patients are more likely to show cognitive impairment and other symptoms of sub-cortical brain dysfunction." Stealth Virus Testing Center for Complex Infectious Diseases

HPA axis dysfunction: "His clinical evidence states that the symptoms associated with Persian Gulf illnesses appear to be caused by abnormalities in the hypothalamus portion of the brain, which controls many bodily functions. When the hypothalamus malfunctions, patients can experience chronic fatigue, fibromyalgia, peripheral neuropathy, arthritic esthesiopathy, chronic diarrhea and bloating, and respiratory problems. In terms of Neuropsychiatric phenomena they have memory problems, decreased cognitive ability, agitation, compulsive behaviors and obsessive thoughts, vulnerability to mental destabilization and a generally minimal stress tolerance. In my own experience they have subtle but consistent neurological problems like clumsiness, visual disturbance and attentional difficulties." "Persian Gulf Illness: Is It All Just 'In Their Heads?' New Report Shows Evidence of Brainstem Encephalitis in Gulf War Veterans" William E. Baumzweiger, M.D.

"SPECT scans show anterolateral and dorsolateral hypoperfusion, the right hemisphere worse than the left. The right hemisphere deals mostly with novel (new) situations and uses norepinephrine. Norepinephrine is crucial to cognitive novelty. The left hemisphere deals mostly with repetitive, well-routined, pre-learned activities and uses mainly dopamine. Dopamine is critical to cognitive routinization. Flu-like illnesses are known to deplete brain norepinephrine. Regional cerebral blood flow is consistently found to decrease after exercise or any activity that makes the patient worse, for example doing calculations.

PET scans show activation of the dorsolateral prefrontal cortex along with decreased regional cerebral blood flow to the left angular gyrus, part of the neural network involved with tasks that require "willed action". Hypoperfusion and malfunctioning of the inferior parietal cortex leads to inappropriate sensations, behavior and emotions." "Betrayal By The Brain: The Neurological Basis of Chronic Fatigue Syndrome, Fibromyalgia Syndrome and Related Neural Network Disorders." Dr. Jay Goldstein


So what do you do? Perhaps you're still working and notice you are unable to even grasp the simplest part of those new forms you have to use. Perhaps people are noticing that glazed-over look you have as you struggle to understand a new instruction. Maybe you've overdrawn your checking account again - despite superhuman efforts on your part to prevent it. Perhaps you're watching the Weather Channel because it's the only channel that makes sense. You're forgetting to take the garbage out. The list is endless on how this cognitive dysfunction can affect your life.

Your personality is changing. You're no longer as spontaneous as you used to be because everything coming into your brain has to be sifted for importance - for nuances you used to catch easily. You're struggling to react appropriately to everyday situations - and it's a constant effort that adds to our stress.

The good news is that Brainfog is reversible, or, at least, the progression can be halted with medications. In fact, the SPECT scan pictures above are actually of a CFIDS brain pre and post treatment (although Harvard neglects to tell us what the treatment involved).

There are anecdotal messages on the lists on various herbs and medications that have helped. Co-enzyme Q10 150mg a day seems to help many people, including myself. Gingko Biloba has adherents. Dr. Lapp says low dose Ritalin seems to jump start the brain (and I find that to be true). NADH helps some people. Neurontin may help with lessening of brainfog.

Because our brainfog is underdiagnosed by our local doctors, there's very little research on treating it - especially in FMS. However, please don't feel that there isn't something that can't be done. I can vouch for that medications listed above do help, and are worthy of you and your doctor discussing the issue.

ADVOCACY

Since 1997, I have spent my waking hours being an advocate for CFS, Fibromyalgia, and Lyme patients.  Before we all started getting treated for Lyme and getting better, our CFS support group had over 300 members who met monthly.  If a patient believed they couldn't adequately convey their actual needs and symptoms to their doctor because of brainfog or because the doctor was being patronizing and/or dismissive, when asked, I would accompany patients to their appointments as their personal Patient Advocate.  I loved doing it and that patient and I most often felt that having their own Nurse Advocate had been beneficial for them.  There was only one instance that this didn't work.  One arrogant and particularly dismissive guy refused me entrance into the room despite the patient's expressed desire.  Needless to say, that appointment had been disappointing for her again. 

ABOUT ME


I maintained the website entitled "CFS/Fibromyalgia Information Page" from early '98 until this Fall when due to financial problems, I lost my home's internet access, those 158 pages and all the peer-reviewed research I'd gathered was gone.  And instead of trying to resurrect my web pages from an old computer, I've decided to give birth to yet another blog/journal dedicated to the same audience.   Now I go to the Library to stay in touch with friends and have adopted new web email addresses.   My articles including the one entitled "Brainfog" are still floating around, but if you ever needed to know what depression and/or brainfog can do, examples are endemic in my life.   

Included in the website was the extensive FM/CFS Survey of 2,700 online responders.  Among the results I remember was that we averaged seeing 11 doctors before we found one that addressed the simplest of our needs.  Also the symptoms of both FM and CFS overlapped almost completely.  While this survey was completely anecdotal and subjective, at the time ('98), there was no peer-reviewed research comparing and showing the similarities between CFS and FM since most researchers believed they were two very distinctly different ailments.  I think politics played a role in that.  Rheumatologists treated FMS and thought that CFS was totally a wastebasket illness and vice versa.  And now there is another political tussle: are CFS and FM caused by Lyme Disease?  In 2002, when I stated that was the situation, untested CFS and FM patients felt hurt and felt that I was “selling out.”  The positive Lyme folks tended to agree with me,

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FM TO CFS TO LYME

I thought that my "troubles" began in 1989 when I was rear-ended by a druggie going 60 miles an hour while I was stopped at a city red light.  Two years later, Fibromyalgia was diagnosed.    Since I had all the symptoms, it seemed like a valid diagnosis and I was grateful to finally be diagnosed with something!  Subsequently, I spent many years immobilized with widespread pain secondary to only being treated with a series of SSRI's.  In 1994 I had to retire early and lost my new husband who, like my former employer, just couldn't understand my sudden change in behavior and decrease in mental faculties.  To be somewhat fair, those were the "Dark Ages" in Fibromyalgia treatment.   


Over time, I perceived my Rheumatologist to be one of those patronizing and dismissive docs. By the end of '97, I looked for and found a local CFS "guru' who treated me wonderfully. He is an Internal Medicine doc with an Infectious Disease specialty. I respected and trusted this doctor so much, I selfishly offered myself up as a lab rat. My immune system showed significant deficiencies, so I got many Immunoglobulin IV treatments with no significant benefit. Not only did I not feel better, my immune deficiencies remained. Such IV's are just cortisol and we now know that cortisol may be detrimental for us since such high doses further depresses our immune system for a time.

Over time, I perceived my Rheumatologist to be one of those patronizing and dismissive docs.  By the end of '97, I looked for and found a local CFS "guru' who treated me wonderfully.  He is an Internal Medicine doc with an Infectious Disease specialty. 

I respected and trusted this doctor so much, I selfishly offered myself up as a lab rat. My immune system showed significant deficiencies, so I got many Immunoglobulin IV treatments with no significant benefit. Not only did I not feel better, my immune deficiencies remained. Such IV's are just cortisol and may be detrimental for us since such high doses of cortisol further depressed our immune system for a time.

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AMINO ACID LEVELS

Because most of my amino acid levels were very low and showed some minor vitamin and mineral deficiencies, at my insistence, I got him to prescribe a series of IV Meyer's Cocktails.   At my insistence, he prescribed a series of IV Meyer's Cocktails.  It's simply a high dosage IV multi-vitamin infusion and its ingredients and their dosages can be found on the internet.  I only had one because as it was finishing, I noticed that the Vitamin C dosage was 1/4 of what I expected.  It turned out that the nurse decided that 4 Grams of Vitamin C was too much and made the changes on her own and stated that she had planned to increase all those vitamins and minerals gradually over the next three infusions.  Since I was paying for it myself that ended that.  But I did seem to feel better.  I started taking his recommended oral amino acids, vitamins and minerals, increasing the doses over a period of time.  He didn't sell them so I became a regular at the local vitamin shops.  If you can afford it, testing your immune system and your Amino Acid blood levels may be beneficial for you.  I actually felt significantly better with the amino acid supplementation - so well, I considered my Fibromyalgia to be in Remission!  (my pressure points were gone, my MCS evaporated into thin air, and my IBS disappeared.  I publicized my high dosage supplementation everywhere.  Coincidentally, there were even books written soon after recommending the same supplementation and in my extreme dosages.  I found it interesting and a validation. 

Some folks have questioned my taking all those amino acid supplements, even the vitamins and minerals, often inferring that they were "drugs."  I think that folks are more educated about them these days, but to answer those concerns, amino acids are the building blocks of our bodies and are not any different than those we find in our food other than the fact that you can take specific amino acids in the dosage you and your doctor discuss.  If you have no specific deficiency, your urine will be quite expensive.  (Medical doctors can't prescribe over-the-counter supplements unless there is a specific need for them or can be found in the PDR.)     

In those early years with my CFS "guru," he often gave his patients month-long prescriptions for penicillin, Doxycycline, and Biaxin.  After each month, we were supposed to report back with our results and, if one didn't have good results, change to a different antibiotic for the next month.  When I started the Biaxin, I felt significantly better.   Almost every patient reported good results with one of those antibiotics.  If your results were excellent, he prescribed that medication for even longer durations.   He  didn't know how close he was!  In those days, Lyme Disease "only" occurred in the Northeast.  Of course, in my state, most of us have relocated from the Northeast and the Midwest. 

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HOW MY DOCTOR BECAME A LYME "GURU"

Sometime in early 2001, my doc was going to participate in the Phase III trials of Ampligen (a drug that was supposed to change our RNA which I couldn't understand logically since it hadn't been successful for HIV).  

Although the patients had to have the financial resources to pay the estimated $25,000 for the 6 month trial themselves, 25 of his patients signed up.  (By then, I couldn't afford it.) 

One of the diseases that needed to be ruled out before starting Ampligen was Lyme Disease.  As I understood it, about 96% (24 out of 25) of those patients turned out to be positive by the woebegone Western Blot!   (In those days, the Western Blot was even more insensitive and fraught with false negatives.  For just one small thing, "Equivocal" was considered to be the same as "Negative" to many doctors and the insurance carriers. 

Things have changed since then but only after many of us spent our own good money for more specific and sensitive tests.)  The current protocol states that Lyme Disease can be diagnosed simply by the symptoms anyway but that's not often followed.  So my CFS doc became a Lyme guru (along with most of the other CFS docs participating in those trials)!   

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RESULTS OF BEGINNING TREATMENT

Because my Western Blot was equivocal and I could then afford neither the expensive tests nor the IV Rocephin, I had no choice but to ask for oral Biaxin.  I maintain that my experience was far better than those who took the IV's.  For instance, I didn't have to have a PICC line inserted multiple times, along with its attendant possible complications, didn't have to deal with Home Health companies, their appointments, storage of medical equipment and waste, didn't have any nasty side effects, or the possibility of the subsequent gall bladder surgery.  Instead I just popped two pills a day and within three days (3!). all my synovial joint pain was gone!  (Synovial joints are those with a liquid-like substance that act as cushions within them like knees, hips, shoulders, elbows, etc)  By the way, based on my knowledge of Lyme patients, I believe the percentage of people who ended up with gall bladder surgery after starting Rocephin is way out of the norm and they should band together and start class-action lawsuits against the FDA and drug manufacturer to at least change the drug's warnings. 

My situation indicates that I have "late-disseminated" chronic Lyme Disease and using my medical history as a gauge - the first of four pneumonias in 1985; having been closely followed by my hospital's medical officer after the 1982 "allergic reaction", and my remembering that I thought I'd had ringworm after walking the Mohawk Trail in NY while recuperating from having surgery in 1985 - my doctor estimated I'd been bitten in 1985.  Fifteen years with incorrect diagnoses!  The only person I can blame for that is myself because I never sought medical care for the "ringworm" since I knew I would be taken off work, but perhaps it might have been found then. 

Even I couldn't believe that all my joint pain had disappeared.  (It probably didn’t occur years earlier because of experiencing a Herxheimer Reaction and therefore, not taking it consistently.)  I thought I had become a victim of "the placebo effect."  The term Placebo Effect comes out of peer-reviewed research.  There are always patients who don't receive the drug they're testing but take something as simple as a sugar pill (the placebo).  Neither group is told which they're taking.  Occasionally, believing they’re taking the “real” one, the placebo takers experience the relief of symptoms better and faster than possible.  Unfortunately for those patients, the placebo effect wears off quickly.  To test my response, I took myself off the Biaxin and the joint pain returned.   Resuming it, the joint pain again evaporated in three days. 

I had never heard of long-term antibiotics and I was uncomfortable with the idea of it.  All through my career the use of long-term antibiotics was considered dangerous and the mantra was "what would happen if one got very sick and needed that drug?  Perhaps one would have developed a tolerance to it”.  I went to a Chief of Rheumatology that I respected.    He calmed my fears and stated that he and many of his colleagues were prescribing long-term antibiotics for joint pain since research had shown the culprit could be from Chlymidia, Syphilis, Lyme Disease, and/or Mycoplasma residing within the synovial joints and the treatments are the same, i.e., long-term antibiotics.  If necessary, I recommend finding a good Rheumatologist who, based on your Lyme arthritis, will prescribe antibiotics and take your insurance.  As the Chief said, he simply uses your arthritis as the barometer to changing or increasing your antibiotics. 

FINDING A DOCTOR

Finding a doctor:  The first thing one has to know is that most of the Lyme-literate doctors no longer deal with insurance company's contracts due in part to the insurers demanding justification for long-term antibiotics.  That means they are often a cash-only business and can refuse to bill Medicare or your good private insurance, letting you fight with the insurers for reimbursement.  What does the average patient do if they don't live in the same city as a Lyme-literate doctor?    Unless you're rich and can travel, you're probably out of luck.  What then?  In contrast to my Lyme doctor, patients have reported that Infectious Disease physicians, Neurologists and Immunologists outside of the Northeast are often the most dismissive despite this being an infectious disease that inhibits the immune system, with neurological results and is epidemic throughout the US.  To be fair, they didn't receive an education on Lyme Disease while in school.  Most of the Lyme "gurus" do not specialize in Infectious Disease.  Since you need a Primary Care Physician anyway, find one who's eyes don't glaze over as you tick off your symptoms.  Then gradually start helping him/her learn about Lyme Disease.  These Internal Medicine folks can sometimes be worth their weight in gold!   Even my Psychiatrist once wrote me a script when I was in-between appointments. Ignore comments such as "It's just your Lyme acting up" as if there's nothing to that could be done about it.

 "Right drug, right strength, long-term treatment" should always be what you want for your Lyme treatment.  Look up the esteemed  Lyme-literate doctors' protocols and if they make sense to you, make sure your doctor provides you individualized treatment and follows them closely.  Unless you're rich, stay away from out-of-pocket medications especially if the doctor's office sells them.  In fact, I suggest you not waste your money on some unproven IV's at some doctor's little clinic, or pay some "distributor" to will sell you over-the-counter meds you could buy for a lot less at your local vitamin store.  While those "distributors" may claim to have more pure and/or more biodegradable products, these days most of the vitamin and mineral manufacturers produce excellent products.

TOLERANCE?

Do we develop tolerance to our antibiotics?  In my case and from what I've heard, we don't seem to.  I've been told it's because of the Lyme spirochete moving in and out of dormancy, isn't being dosed continually.  Usually drugs like Biaxin and Doxycycline are not used in life-threatening illnesses and today, there very many different IV antibiotics to pick from.  (Let's hope no one has to test this theory out!)

   

So I continued my Biaxin off and on for over two years.  Along with the diminution of my synovial joint pain, my brainfog lifted gradually over the next six months allowing me to string words together to speak somewhat intelligently, type without thinking I had dyslexia, and from having to use a motorized scooter just to walk my dog or go into any store, within a year I was walking without assistance.  Because I believe I'm in another relapse, I've just received a script from my new Primary Care physician and the Biaxin has worked again. 

CHEERING THROUGH YOUR TEARS

Over the years, I've been saddened by patients whose only treatment has been very low-dose Doxycycline.  If they understand what a Herxheimer is, they know they've never experienced one.  And they pray for it.  Most Lyme-literate doctors scoff at Doxycycline at a total of 200mg daily for a normal sized adult.  It’s understandable to start at that dose as a precaution, but without an adverse reaction, I suggest those patients return within 2 weeks and emphasize they want a new script for better doses or a different antibiotic (based on my memory of Dr. Burrascano's Protocol).  Or if they don't have a Herxheimer Reaction within two or three weeks, they should again return to get a different antibiotic.  With the right drug and dosage, I know no one who had a Herxheimer later than three weeks after beginning it.  And continue pushing your doc for your individualized treatment.  If you're  disappointed for any reason, find another.  A few years ago, Dr. Donte advised local medical personnel to keep giving antibiotics until the patient is "better than better."  (Herxheimer is short for the Jarisch-Herxheimer Reaction, a cluster of all of your symptoms all together for a short period of time as a response to the die off of the bugs.  It can be rough but it passes.  A friend of mine aptly described her Herxheimer duration as "cheering through my tears.")

CAN OUR SPIROCHETE BE DESTROYED?

Lyme is caused by a spirochete, a kin to the bug that causes Syphilis. One thing that's very important to know: No one can be cured of a spirochete!!!  With syphilis, the laboratory measures are only shown as "greater then" a base-line that's considered normal after antibiotic treatment.  In other words, it's always there.  So if one's doctor suggests that one's Lyme has been cured, he couldn't be more wrong.  One's blood titers may be lower after a long run of antibiotics, but the nasty little bug is always present, ready to cause a relapse whenever one's immunity is lowered.   

I have talked to scores of patients who state that they can't tolerate antibiotics.  They recount past scripts had given them problems.   While any antibiotic (as well as coffee, liquor, etc) can cause Leaky Gut Syndrome, I now wonder whether many of those problems were really Herxheimer Reactions.  While I seem to have little trouble with most meds, Erythromycin gives me severe gastric pain, makes me vomit, or gives me immediate diarrhea.  If offered it, I refuse.  However, it may not bother other patients.  There are a couple that are labeled not to take with milk products because they might cause nausea or vomiting.  But we have many different types of antibiotics from which to pick.  Simply stay away from the one that caused you problems.  Interestingly, Erythromycin and Biaxin are in the same class of antibiotics - macralides.  While I can't tolerate Erythromycin, I have no problem with Biaxin.  Pharmacists may question the Biaxin script if they know you have an allergy to penicillin as I do.  These days one can be desensitized to penicillin so it could be taken.   Doxycycline and tetracycline are usually well tolerated even in larger doses but, like any of them, a resulting intestinal fungal infection can occur i.e., Leaky Gut Syndrome.  There are even some researchers who believe that Irritable Bowel Syndrome (IBS) is caused by a systemic fungal infection. (Systemic means it’s throughout the body.) 

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LEAKY GUT SYNDROME

The treatment for Leaky Gut Syndrome is simply an antifungal medication.  I realize that doctors often resist giving antifungal medication in the doses that work so you may have to emphasize that a particular drug or the dosage isn't working.  I think that many primary care doctors are just not used to having to take care of systemic fungal infections.  Their experience may only be that one Diflucan tablet "cures" a vaginal fungal infection while it may be actually a systemic infection.  Back when I first found my CFS guru, he found that I had such a systemic infection.  Through trial and error it eventually took a solid month of Diflucan 500mg twice a day before it was under control.   And that was before Lyme was an entity for us.  Like many of us, over the years, I'd been off and on antibiotics as I sought help for my seemingly “vague” symptoms.  After I began my Lyme treatment, he and I found it just was easier for me to have a good quantity of Diflucan on hand that I could use whenever it was needed.  And through those years of treatment, it was often needed. 

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"Silver Bullets"

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"SILVER BULLETS"

Once a vocal member of an FM list, I now monitor the various lists and websites that deal with these diseases (CFS, FM, and Lyme) and have read over the years as folks promote one "silver bullet" after another.  The folly of pursuing these "cures-of-the-moment," can quickly lead to losing focus of one's actual problems and quickly drain your financial resources.  Some discussions concern “down river” vs. “upriver” substances or treatments and folks are often seemingly confused about the terms.  These discussions sound all very esoteric and scientific.  These terms refer to the metaphor of the cause of symptoms (“upriver”) and the results (“downriver”).   In reality, 90% of the times, these discussions are about the minutest possible cellular problems or deficiencies.  For instance, spending good money on supplementing these tiny elements (“downriver”) in our cells borders on the ridiculous since the reason for its possible deficiency is because Lyme (“upriver”) is lowering our immune system and impacting our cellular makeup.  My supplementation years ago would be considered a “downriver” treatment if it had been used as a Lyme treatment, but I used it for FM symptoms. 

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 JUST A PLAIN WASTE OF YOUR TIME AND MONEY

Additionally, there are folks discussing whether its more beneficial to eat alkaline or acidic foods.  Whichever one chooses, our bodies have a built-in buffering system to keep our bodies' pH in balance. Since the kidneys handle the buffering, if your blood tests indicate a too high (acidic) or too low (alkaline) pH, it may mean something very serious is wrong and a specialist should be consulted.  However, if medical doctors are suggesting that a urine or blood pH difference of  between 0.01 or 0.02 makes a “difference,” you are being frightened for no reason  Additionally, if urine is being tested by a pH paper and it is shown to be slightly acidic or not, that’s simply the end result of our buffering system at work.  Food is not going to change that reading by important differences. And using pH paper to test our urine is the most insensitive way to do it.  Please look these matters up so you are armed with the correct information and not swayed by irrational discussions.  This is a fine example of trying to find “downriver” solutions to an “upriver” problem.

Just think of what these discussions can cause:  Without valid laboratory testing, I must take huge doses of a minute cellular mineral and eat acidic foods (whatever they are), wasting my time and eroding my finances instead of finding a Lyme-literate doctor who follows peer-reviewed protocols.  And what have I gained?  Very expensive urine and probably heartburn

I've also talked to patients who believe that homeopathic meds can "cure" Lyme.  I sympathize with patients who seek such doctors with the hope that they won't need the recommended heavy and long-term use of antibiotics and possible financial stress.  Homeopathic medications by definition are usually minute quantities of a medication.  Those doctors are very good salesmen.  As I’ve said, I find it worrisome when doctors sell those medications out of their office.  They often cite research that "proves" the rationale for their treatment.  The trouble is that their "research" was frequently done in-house or by a colleague.  I've not seen any of that "research" that has been peer-reviewed (the only quality research).   Please use caution in such situations.  Your Lyme or the co-infections are not going to be cured with minute quantities of antibiotics, anti-fungals, or antivirals.  The peer-reviewed research bears that out.  After shelling out lots of money out-of-pocket, most of those patients eventually seek a Lyme-literate doctor and their quality of life dramatically improves.   

You can easily look up any drug or treatment at PubMed.com.  I realize that the medical jargon is difficult to understand, but find a used medical dictionary and arm yourself with your own research. 

Please also use common sense when evaluating treatments that start with putting a drop of medication or a shavings of a pill on your tongue or someplace on your body and measuring either your heart rate or using some sort of electric equipment.   I had a family member who wouldn’t take any medication without making his doctors follow such tongue testing.  (He was escorted out of every legitimate doctor’s office.)  Think it through:  perhaps your heart beats faster or your blood pressure rises just because you have fear of that drop, are cold, of have a fever .  Perhaps there’s some unknown malfunction with the electrical “machine.”  Should your treatment be prescribed or adjusted in those situations?  In a hospital setting, heart rates are counted over longer periods of time than just a few seconds because of all the many different causes that would change a heart rate.  As far as I'm concerned, those tests and treatments are a waste of your valuable time and money.  If you had syphilis, you wouldn't even consider such things!  (Lyme is just as serious.)  Not suggesting that these doctors are, but quacks are easy to find for any disease, perhaps even easier than finding a Lyme-literate doctor who follows peer-reviewed protocols.  

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CO-INFECTIONS

Because I wanted to find a cause of my continued fatigue, I embarked on ascertaining which co-infections I might have.  I knew I've had the chronic relapsing Herpes virus called Epstein-Barr (EBV) since the first of four pneumonias in 1985.  I also had been "given" systemic (throughout my body) Herpes Simplex (HSV) in 1982 when my employer "coerced" all their Critical Care and laboratory personnel to join the country's convicts in participating in the Phase III trials of the Hepatitis B live virus vaccine.  Because of the minimal filtering in those days, we were supposed to be thankful if we didn't contract AIDS or Hepatitis B itself since the live virus was collected from IV drug users.  But we were certainly not warned of the possibility of - like me - getting a systemic HSV infection or whatever else.  Of course, we had to sign away any right to sue.  (Thanks to us however, the current Hepatitis B vaccine is far safer because it now contains the dead virus.)    Note:  I wasn’t told what my "allergic" reaction to the vaccine had been diagnosed as until I requested my medical records years after I retired in 1995!  Imagine having to notify past partners and a husband up to 13 years later! 

With this new testing, I was found to also have the Herpes virus called "HHV-6" as well as Mycoplasma.  I started out with the usual two or three medications for treating  the Herpes viruses but either because I'd been infected with them for so long or because of my immune deficiencies, no drug worked until I started Cytovene (gancyclovir).   And I was stunned by its effects.  At the time it had only been tested to work on HHV-6 and not for EBV, my fatigue dramatically lessened and I had a sense of well-being (difficult to explain what that is) for the first time in decades, but my co-pay was more than I could bear over the long-haul.  Of course, I’ve tried all the over-the-counter anti-virals meds, too.  

Why is it important to test for and treat co-infections?  Because the Lyme Disease bugs are eating away at your immune system constantly, making you susceptible to, for instance, those usually dormant Herpes infections to relapse again and again with the attendant fatigue and/or outbreaks.  It's claimed that 90% of the world has Epstein-Barr but only folks with decreased immune systems have full-bloom chronic relapsing infections.  One might be surprised how closely the symptoms of EBV, HHV-6, and other Herpes infections may mimic symptoms usually associated with CFS, FM, or Lyme.  Check it out.  HHV-6 eventually can cause heart problems. A couple of the Herpes infections may eventually cause cancer.  Not only are your family, friends, and partners at risk from the various Herpes infections, but it’s now believed that Lyme is a sexually transmitted disease, too.

Yes, we share a plethora of symptoms that makes doctors' eyes glaze over, but once we have our lab tests in hand, the treatment is obvious:  Lyme requires antibiotics; a relapse of a Herpes infection require an antiviral that works (unlike Lyme, this can be easily demonstrated by blood testing); fungal infections require antifungal medication; and the psychosocial problems can be "fixed" with either talk therapy and/or meds.  Simple.

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PSYCHOSOCIAL

We also normally have pain and sleep difficulties.  Again, to not visit appropriate doctors is just being irresponsible to yourself.  Enduring pain and sleeping poorly can produce similar or worsen our symptoms.  Find a good pain doctor who will try to find the physical cause of your pain and is willing to treat your pain while looking.  Stay away from the pain docs who believe "behavior modification" is the magic bullet despite supposed research begun overseas (which I consider to be very political and biased).   Locally, I was swayed by the thought that I may have "Deconditioning Syndrome," i.e., my muscles had atrophied through lack of exercise.   While some exercise is better than none, I find these docs to be so involved with changing your behavior to their standards, they potentially can do you harm.  Asking someone who is feels lucky to be out of bed, clean, and at the appointment to start calisthenics or weight training three times a week is ridiculous.   Been there, done that and ended flat on my back for weeks with everything in relapse.

Depression is normal with us.  Who wouldn't be depressed when we've often lost our livelihoods, our spouses, and/or friends who don't understand diagnoses they can't "see."   While folks tend to bristle when it is suggested they talk to a Psychiatrist or a Counselor, there is really no need to suffer with depression.  By itself, depression may potentiate the symptoms we have, may worsen our physical symptoms, and definitely makes coping with all our issues difficult.   While they’re not as good as talking to an actual Psychiatrist, there are online tests to find whether one is depressed or not.  With our diseases and symptoms, refusing to at least explore the possibility that one has depression is, as far as I'm concerned, proof that one has some problem. 

I'm not suggesting you become an addict, but with decreased pain and with consistent restorative sleep, you'll be amazed in your physical and emotional improvement! Your immune system will thank you! Reputable pain doctors usually require that you sign a contract, but I’m sure that’s no problem.  And again, notify your doctor if the medications that aren't doing the job you need.  If the initial low-dose pain medication isn't enough (or your tolerance changes - a normal occurrence), ask for a different med or a higher dose.  If the sleep med doesn't give you eight hours of sleep consistently, that's the indication for a different med or a higher dose.

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XMRV Research

I'm thrilled and faintly optimistic about the XMRV virus research but we've been here before.  Research on CFS patients has long shown that our cytokines were elevated indicating there was some underlying infection.  When it turned out that EBV wasn't the cause, we were disappointed.  Subsequently when so many of us turned out to be positive for Lyme, that certainly qualified as an "underlying infection" but of those CFS/Lyme patients who had good antibiotic treatment (right drug, right strength, long-term treatment), fatigue has seldom been significantly alleviated.  This recently discovered XMRV, along with all our other viruses may be the reason. (The following is a fair use copy from the published story.)  XMRV stands for xenotropic murine leukemia virus-related virus.  The researchers say that it probably descended from a group of viruses that cause cancer in mice.  How or when XMRV found its way into humans is unknown.  But it has also been linked to cancer in people: it was first identified three years ago, in prostate cancer, and later detected in about one-quarter of biopsies from men with that disease (and in only 6 percent of benign biopsies).  It is a retrovirus, from the same notorious family that causes AIDS and leukemia in people.  The researchers reported in the journal "Science" that 68 of 101 patients with chronic fatigue syndrome, or 67 percent, were infected with XMRV, compared with only 3.7 percent of 218 healthy control subjects.  Further testing after the paper was written found the virus in nearly 98 percent of about 300 patients with CFS!  The research director stated she believed that the virus would eventually be found in every patient with chronic fatigue syndrome.   XMRV affects the immune system, can probably cause a variety of illnesses and may join forces with other viruses to bring on CFS, she said.

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FLU SHOT? 

Should we take the H1N1 shot?  Controversy is raging about whether the public (those non-Lyme folks) should take it.  I think the most convincing fact I've heard from a CDC doctor is that if the "Swine Flu" hadn't been publicized by the CDC and so covered by the media, the H1N1 vaccine would have been quietly added to the normal fall flu shots.  I took the normal flu shot three days ago and I "suffered" the usual symptoms: fatigue, low-grade fever, and severe muscle aches and pains.  The good thing is, unlike a "real' flu, it disappeared in a couple of days.

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