My remission, part 1: what didn't work

Blog entry posted by KNXiaohe, Dec 11, 2013.

Hello everyone :)

In treating my illness, I acted independently with the help of a few doctors who were thankfully willing to work with me according to my own treatment philosophy, including a set of principles both negative and positive. These are my general negative principles:

A. ME is a disease that causes dramatic physiological sensitivity, so I have approached all treatments cautiously. All treatments that I tried, I started at one eighth of the recommended dose until I knew how I would respond.

B. I started one treatment at a time unless I understood the interaction of the treatments, and I discontinued the treatment if there were no clear benefits within a period of time I felt comfortable with. I went through years of experimentation with various protocols, practitioners, drugs and therapies which didn't work for me. Some were simply useless while others were harmful. The following is a list of therapies that fell into this category for me. I have reason to believe some of these treatments/practitioners may be generally ineffective or even harmful, although I will not be going into any detail as to my reasoning in this post; others were simply "not for me."

The following treatments were ineffective but harmless for me:

-Shoemaker protocol/Mold toxicity theories
-Orthomolecular medicine
-Intensive hormone replacement
-Herbal medicine, Chinese and Western
-Teitelbaum protocol
-Regular vitamin IV treatments
-Ampligen and Rituximab trials: I was concerned about my risks. ME is a poorly-understood complex neuroimmune disorder so we have little way of knowing the long-term outcome. If there were a viral component, I felt I'd be too far gone after nearly a lifetime of infection and I wasn't willing to take the risk that either of these drugs could worsen my condition. However, I wouldn't discourage anyone who is truly desperate and hasn't improved from any other therapies.
-My neighborhood witch doctor

Treatments that I reacted poorly to:

-Paleo and similar diets
-Diazepam, lorazepam and zolpidem
-Drugs that block cytokine and other chemical signaling, including losartan, telmisartan and doxycycline
-TA-65, a supplement which is supposed to lengthen telomeres.
-Modafinil, armodafinil and Adderall. This stuff nearly killed me. After taking only 1/4 tab of armodafinil, my blood pressure shot up to 180/140 and stayed there until I was treated at the ER. The other two stimulants had similar but milder adverse effects.
-Supplements containing glutamate. Neural excitotoxicity is well-documented in ME and glutamate is a primary excitatory transmitter.
-Injectable peptides. I was deficient in growth hormone and tried several of these including GHRP-2, GHRP-6, CJC-1295 and Ipamorelin. I believe these worsened inflammation in my pituitary.
-Tylenol and antacids. Many over-the-counter treatments for symptoms such as headaches and GERD can be very toxic to people with ME. Acetominophen damages mitochondria and proton pump inhibitors also alter cytokine profiles.
-Methylprednisolone at normal treatment dosage. It temporarily helped but the rebound glucocorticoid deficiency further dysregulated my HPA axis.

C. I have kept the number of non-replacement chemical treatments as low as possible. This includes all chemical compounds, pharmaceutical and supplemental, except those present naturally in the body (given at a dosage to correct deficiencies). If you have low magnesium, for example, or if your vitamin D is low, it makes perfect sense to take a supplement at whatever dosage restores your blood level to a normal range. Chemical compounds not naturally found in the body, whether produced by pharmaceutical companies or supplement companies, can have any number of unforeseen effects and it stands to reason statistically that the more of them you take, the larger your chance for negative long-term effects, negative interactions, and/or both.

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About the Author

KN is in remission from lifelong ME/CFS/? and two other chronic illnesses. The storm started at age 3 and all her developmental windows were smashed so she never got a chance to establish herself as a "person." After getting off the prison bus, she's attempting to construct a decent approximation of a human identity, starting off with applications to grad school to research systems biology.
  1. WoolPippi
    Great post! It makes me feel... proud(?) Hope you feel proud too, you should!
    I share your principles of approach.
    KNXiaohe likes this.
  2. anniekim
    Thanks for sharing this. May I ask what your Methylprednisolone at normal treatment dosage was? Many thanks
    KNXiaohe likes this.