Setting the table

The job of the Patient Advocate is to “remain objective” - and to try to keep the big picture in mind. This is difficult - as CFS/ME is a disease of many small and seemingly disconnected parts. The PA has to juggle and consider all the elements, and to try to not let parts drift off unattended. I have tried to delineate these separate parts of this illness (as I see them) in other blog posts.

The disease of CFS/ME itself is known to fluctuate or “cycle” – often for unknown reasons. The patient can get better or worse without any clear explanation. However, occasionally things can get out of whack for a particular reason. This can be because of slippage and forgetting the maintenance.

Many supplements and drugs are suggested for the treatment of CFS/ME. The Patient Advocate tries to prioritize them. The PA spends a lot of time reading about various medicines and supplements. The PA’s ideas should not be taken as medical advice - as the Patient Advocate has no training in this area.

A few years back Dr. Paul Cheney offered his priorities for treatment. These suggestions were made prior to his more recent treatment modalities, However, all of these suggestions remain in his protocol - except for Nexavir, which has been replaced by a more complicated set of bison cell signalling factors. Dr. Cheney’s “key item” list includes:

Magnesium (non-oral) [SQ or Paste],
Klonopin 0.5 mg,
Hydroxycobalamin (by injection) @ high dose,
Isoprinosine,
Kutapressin (aka Nexavir)

Nancy Klimas also likes Isoprinosine, and looks forward to the results of a phase two trial that will never be forthcoming. She also points out that several supplements have small study track records of showing benefit to CFSers: Omega 3, Co-Q and Vitamin D, among others.

Here are some of the items that this Patient Advocate tries to keep an eye on, items that he feels can make a difference:

1. It is important, early on, to determine if the patient has Hashimoto’s thyroiditis. This autoimmune or viral attack on the thyroid is easy to diagnose – high TSH, high TPO antibodies, goiter, long list of symptoms. Hashimoto’s thyroiditis is eminently treatable, perhaps the most treatable disease in the world with one of the oldest “modern” medications. Treating this illness does take some time, and there is some uncertainty to doing it properly. Treatment includes dietary changes, supplements (Iodine, selenium) and thyroid hormone, either synthetic or natural. Treatment is for life. Benefit comes within 3-24 months on being stabilized on thyroid hormone at the correct dosage.

2. It is necessary to support the adrenals during thyroid hormone supplementation, particularly at the beginning. There are various ways to support the adrenals. These include low dose hydrocortisol, adaptogens, live cell therapy, salt and water, licorice and so forth. A poorly functioning or under functioning thyroid drags down the adrenals, so thyroid and adrenal problems go hand in hand. Taking thyroid hormone to stabilize the thyroid also stresses the adrenals - so attention has to be paid to support of the adrenal glands.

3. Magnesium is key to over 400 regulations in the body. Hence its importance. Magnesium is often low in CFS/ME patients. It is difficult to raise magnesium with oral supplements, although some oral supplements are better than others – magnesium glycinate, for instance, is more absorbable. Dr. John McClaren Howard’s testing at Acumen can determine if the patient has magnesium deficiency, thus precipitating low production of ATP in the mitochondria. Once the magnesium deficiency is realized, it can be treated. Dr. Myhill says that magnesium can be raised with daily (or every other day) low- dose (0.5 cc) sub-Q magnesium injections. Over time, magnesium levels can be raised and benefit derived from doing this. Taurine or lidocaine can be included in the injection to make it less painful. More than likely the injections have to be continued on a maintenance basis to keep the magnesium from depleting again. There seems to be something endemic to CFS regarding magnesium depletion, as if the disease itself precipitates a lowering of intracellular magnesium. Many drugs or supplements can also cause depletion of magnesium. The possibility of antibiotics or antivirals acting as a magnesium drain is very real. Magnesium has to be considered on an ongoing basis as long as the patient has the disease. It is not like you treat a little and then “get beyond” the supplementation. This is true of many things – co-Q. b12, carnitine, glutathione, omega 3, for instance, all need support.

4. It is important to keep an eye on Iron levels. Iron also tends to be low in CFS/ME patients. Low iron has a host of symptoms, many of which mimic low magnesium. Low iron is associated with a host of symptoms including photophobia, sleep irregularities, RLS, and muscle pain. Low iron can be difficult to raise. Supplements do not seem to raise iron easily - and it often takes a long time. Iron cream, a prescription item from Hopewell Pharmacy in NJ, is more effective in raising iron over time. Regular blood levels of iron and ferritin need to be measured in order to determine levels - and the effect of various forms of supplementation. Often iron injections are necessary to raise iron. Low ferritin is associated with thyroid dysfunction and balancing the thyroid function necessitates getting ferritin levels up into the mid-normal range.

5. Vitamin D is another element that is predictably low in CFS/ME patients. Again no one knows why this is. Vitamin D can be supplemented and the number can be raised over time. Often this involves daily supplement in the low thousands of I.E. Ten minutes daily in the summer sun can raise stores of vitamin D and it is important to build the vitamin D in this way if it is possible.

6. Nexavir is a cell signaling factor or peptide from pig’s liver. It is believed to be an immune shifter and to work in good percentage of patients. It comes in an injectable form or a gel, applied once a day. Patients complain about the smell of the gel but it is nothing. Doctors as diverse as Cheney, Guyer, de Meirleir, Enlander and Levine will prescribe Nexavir. Nexavir needs to be taken for six months or longer to determine effect. Nexavir is very expensive and is not covered by insurance.

7. My most recent favorite supplement is curcumin. Many small studies have been made of this Indian spice and the supplement has a modest but growing track record of lowering cholesterol, increasing good cholesterol and cutting inflammation, especially in the eyes. There are two curcurmin supplements that contend with one another for being the best or most absorbable – Meriva and nutravine longvida.

Through supplementation the patient can raise their vitamin D, iron, magnesium and fix their thyroid. Raising each of these items has to be seen in the larger context of strengthening the immune system. Improvement is often subliminal and not immediately obvious. In addition it is possible to raise b12 through sublingual or injection, carnitine, and co-Q-10, equally important in various instances as the above numbered items. More problematic is the raising of the anti-oxidant glutathione, which needs a more sophisticated set of supplements proposed by Rich van Konynenburg, information of which is readily available on the internet. (I need to write an entry on methylation supplementation and the glutathione blockage, which is so important as a treatment modality) Supplementation to increase gut ecology is also dicey and everyone is on their own in this complex nightmare to regulate the gut and make it work correctly – although again there are some broad parameters that can be learnt by the neophyte like myself.