Treatments - A Long List

If at first you don't succeed, try, try again. Then quit. There's no point in being a damn fool about it. -- W.C. Fields

I had to laugh a bit when I first heard this quote. Thinking back on all the hundreds of treatments I have tried and often continuously repeated despite their ineffectiveness (and, at times, counter-effectiveness), I sometimes have to wonder about myself. What was I thinking?

But there is such a desperation and overwhelming desire to get well that one will often try anything (and keep at anything) in the undying hope of it suddenly working.

After I became bedbound, I received a variety of nutritional IV's at home twice weekly (sometimes daily) for about 4 years.... despite the fact that they often made me feel worse. My doctor at the time (she is no longer my doctor) told me that the ill effects were a result of detoxification, and that I had to suffer through it in order to get well. The biggest mistake patients made, she told me, was giving up too early. I wanted to believe her so badly that I continued with the treatments for years, hoping that, contrary to the evidence and my own intuition, I was doing something which ultimately would benefit me. In truth, I was also a bit limited in my choice of doctors. I could find no other MD at the time to come to my house to see me and thus felt I had little alternative but to listen to this doctor's orders.

In the end, it turned out I should have listened to my intuition. My reaction to the IV's was not detox; it was my body's inability to tolerate the treatments. After watching a lecture by Dr. Paul Cheney, a renowned ME/CFS expert, I learned that high dose vitamin C and glutathione IVs can actually have a detrimental physiological effect in some patients with ME/CFS. Not surprised by these findings, and upon further research, I finally stopped the IVs.

The pathology of ME/CFS is complicated and every patient reacts differently to different therapies. I obviously don't want to deter anyone who may be receiving a similar treatment and responding well to it. I just wanted to make the point that I am not one to give up on something very easily.

Though I'm doubtful to ever go down such a road again, I always give any treatment a full-fledged try, often for at least a year or longer. As with anything in life, I've consistently wanted to make sure I gave it my all.

I've received a lot of emails asking me if I've tried a variety of therapies for ME/CFS, and I've therefore decided to do a quick run down of some of the many things I have indeed attempted in my hopes to get well. Please note that this is a very incomplete list and is meant only as a general summary. I have been sick for over 13 years, and to list all the things I've tried in that time would be too enormous a task. So this is just a little overview. Exciting reading, I know, but here goes ... :)

Prescriptions
A growing list of antibiotics (Erythromycin, Cipro, Zithro, Doxy, IM Penicillin, IM Rocephin, etc.), anti-virals (Acyclovir, Valcyte, Valtrex, etc.), anti-fungal (Diflucan), anti-anxiety/anti-depressants (purely to appease doctors; too many to name), anti-malarial (Mepron), anti-coagulant (Heparin), stimulants (Ritalin, etc.), thyroid/hormone replacement (including estrogen, progesterone, testosterone and hydrocortisone), B12 shots (both hydroxy and methyl), hepapressin, immune modulators (Isoprinosine), Florinef, immune enhancers (immunoglobulins) and the like.

Alternative Therapies
Acupuncture, massage therapy, shiatsu, jin shin jyutsu, energy healers, herbalists/herbs, EAV/Asyra and electro dermal testing, live blood analysis, visualization, cognitive behavioral therapy, stress reduction/management, magnetic therapy, affirmations/positive thinking, light GET/yoga and gentle lifting in bed with 1 lb ankle/wrist weights (caused huge setback), hypnotherapy, reflexololgy, reiki, detoxification, meditation, medical intuition, muscle testing, distance healing, prayer, homeopathy, herbs, colonic (ugh!), 4+ years of IV therapy (including Vitamin C, nutritional IV’s, amino acids, glutathione, H202 and saline), oral chelation and a list of supplements far too numerous to name.

Nutritional Therapies
As noted above, I received a multitude of nutritional IV’s twice weekly (sometimes daily) over several years. Almost all of them made me worse. I’ve also tried a growing list of nutritional supplements that likely exceeds well over 300 items. These include but are not limited to vitamins, minerals, enzymes, amino acids, antioxidants, herbs, probiotics, energy/nutritional/green drinks, Gookinaid, juicing, whey protein, transfer factor, colloidal silver, cell food, chlorella, mitochondrial supplements, mushrooms, immune enhancers/modulators, NT factor, adrenal glandulars and the like, NADH, D-Ribose, and so on.

Diets
Elimination diet (no gluten, sugar, dairy, wheat, etc), low carb diet, high protein diet, low protein diet, paleo diet, raw food diet, vegetarian, vegan, low sulfur, anti-candida, and a highly specific food allergy elimination, etc.

Protocols
There are several different ME/CFS and Lyme treatment protocols out there, based on a variety of different theories, or on different aspects of this complicated and multi-systemic disease. Some of the protocols I have attempted include the Yasko protocol, the simplified methylation protocol, the Patricia Kane protocol, the Dr. Zhang protocol, Dr. Gupta's protocol (amygdala retraining), the Myhill protocol (less a sauna), Dr. Martin Pall’s protocol, Cheney’s protocol (prior to his recent change to CSF’s and stem cell replacement), KPU protocol, and several other protocols I’m sure I am forgetting.

Regarding the Marshall Protocol, I had the proper testing done and it was determined (via a conversation between my doctor and Dr. Marshall himself) that I would not be a good candidate.

Doctors I've Seen
As for the various types of doctors I've seen over the years, they include about 5 internists, 3 infectious disease MD's, a neurologist, a rheumatologist, an endocrinologist, 2 dermatologists (for hair loss), an allergist, several naturopaths, a world renowned integrative medicine MD, 3 acupuncturists, 2 herbalists, 2 nutritionists, a psychotherapist specializing in chronic illness, a cognitive behaviorist, and multiple alternative health practitioners.

Whew! So, there you have my partial list. Though few of the treatments have really helped me, I suddenly feel like I've been very busy all these years. :)

As for my current regimen, it includes a healthy diet, meditation, an antiviral, medications to help with sleep, natural thyroid, Equilibrant, Hydroxy B12 shots, the KPU protocol, light stretching in bed, and about 20 different supplements. I am also attempting LDN (low dose Naltrexone) and a nutritional immune modulating powder called Avemar.

Here's hoping that new and better treatments are around the corner for us all. If nothing else, there's no doubt we will all still continue to try, try again...

A Note on Lyme Disease

Something I have yet to really mention on this blog is my dual diagnosis of Lyme Disease (which came in 2004 -- eight years after becoming ill). This is in part because I've always struggled with how big a role Lyme is actually playing in my case, and on when, where, how or even if I really have it.

Testing for Lyme is complicated, confusing and not very reliable. False negatives are common. I was negative for Lyme with standard tests through regular labs, as are (from what I understand) most patients if tested years after the initial infection. I tested positive, however, through a specialty lab called Igenex. This in and of itself might leave some doubtful, as Igenex (with good reason) considers certain bands indicative of Lyme Disease that the CDC does not. But I was not just positive by Igenex standards; I was positive by CDC standards as well. Twice. I'm told this is quite a feat, as antibodies may no longer be present so late in the game, and the Lyme-causing bacteria (known as B. burgdorferi) are not always easily detectable. Apparently, they are a bit sneaky, and like to hide.

Given these results, and thus assuming that Lyme is a contributing factor in my case, how did I manage to contract it on top of viral-induced ME/CFS? Two possibilities come to mind. I did once have a tick bite as a child. I was about 11 years old, and found a tick on my back almost immediately after it bit me. It was not engorged. My mother removed it with tweezers, and that was pretty much the end of it. I never developed a rash or any other symptoms, so we didn't think much of it. Is it possible I contracted Lyme then but it remained latent all those years until I got mono, sending my immune system into havoc? Maybe, though I'm skeptical. I was quite vibrantly healthy up until that fateful day I fell sick, and there's no doubt that my illness had a clear and sudden viral onset.

However, for a few months previous to that onset (following a trip to Colorado), I remember feeling unusually tired quite a bit of the time -- almost like I was constantly fighting off a cold that never actually came to fruition. The fatigue was not anywhere near enough to interfere with my life at all, but it was enough for me to take slight notice. This makes me wonder if I may have somehow contracted Lyme during that trip, perhaps unknowingly getting a tick bite while hiking around a bit in the Rockies. Then, when I came down with mononucleosis a few months later, my immune system went berserk on me, ultimately resulting in ME/CFS.

I will never know for sure, I guess. Still, I feel ME/CFS to be my primary issue; not just because of the viral onset, but because I fit that picture so much better than the Lyme one. I don't tend to relate to Lyme patients as much as I do to those with ME/CFS. I don't have joint pain, tremors, numbness (other than from poor circulation) or all that much muscle pain unless I over-exert. Also, if I were to say what my most debilitating symptoms were beyond or even above the severe exhaustion, they would be orthostatic intolerance and post exertional setbacks (a worsening of all symptoms upon even the most minor of activity) -- the latter of which is considered to be the hallmark of ME/CFS. This is true of Lyme as well, of course, but it is something you see more distinctly and profoundly in ME/CFS, it seems.

It's also quite plausible that chronic Lyme is yet another form of ME/CFS; that is, if ME/CFS is caused by an infectious agent (viruses or bacteria), the bacteria that causes Lyme could be one of those possible triggers.

Of course, all that being said, assuming I do have Lyme, it is clearly complicating my case. I have tried a multitude of treatments for it, just as I have for ME/CFS: a growing list of antibiotics, mepron, herbs, diets, protocols, IV's, nutritional supplements and alternative/natural therapies. Thus far, nothing has worked.

So, what do I do after being diagnosed with two illnesses that are poorly understood and lacking in viable treatment options? The only thing I can: keep trying, keep searching, keep looking for answers, and keep hoping.

For a brief trailer on a newly released documentary on Lyme called Under Our Skin (now in theaters), check out the video below. It is a must-see.



*Note: For those who are more knowledgeable about Lyme than I am, please feel free to correct me if I got anything wrong. I am much more well researched in the area of ME/CFS than I am in Lyme Disease. :-)

For those looking for more info on Lyme, please see some of the websites linked on this page.