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...