CFSs/Fibro Treatment in Maryland

Anything on your mind that isn't about RLS? It's nice to realize that there is life beyond this disease and have an opportunity to get to know our online family in a different context.
Post Reply
ViewsAskew
Moderator
Posts: 16570
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

CFSs/Fibro Treatment in Maryland

Post by ViewsAskew »

I ran across a link to this doctor today:

https://www.endfatigue.com/home.nsf

Penguin, don't know how close you are, but if you are still having problems he might be a good person to see - he's had it himself and sounds like he "gets" the whole picture.

I actually started reading an article he wrote about treating RLS; that makes it even better. He understands it, too.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Thanks Ann, I have been reading through his site as I have been having a lot of difficulty with "fibro/Chronic Fatigue Syndrome" as I do each year when I increase my physical activity...and the weather changes so drastically, etc, who knows!

I am not certain but I believe he is confusing RLS with PLMD at times from his statements (ie sleep study to determine RLS). Aside from that I think that he has some good suggestions.

What tests do I need to do to be evaluated for my CFS/FMS?
Although there is no test that is needed to diagnose CFS/FMS, there are many tests that can be helpful in determining what treatments you need. Beyond this, there are tens of thousands of dollars worth of tests that can be done that will be abnormal and quite interesting yet totally useless in helping you to get well. As my focus is on effective treatment, I'll only be discussing the more common tests that will affect my initial treatment recommendations. My book discusses many other tests that, although helpful, are only used in selected patients. It also discusses which diagnoses and symptoms to use for each test so that your insurance is most likely to cover it. If your physician will not order the tests for you, you can get a lab requisition form for these tests on my web site at a www.endfatigue.com.

Tests that I recommend as part of the initial evaluation in all CFS/FMS patients:

1-Complete blood count (CBC). This common and inexpensive test gives us a wealth of information. If the WBC (White blood cell count) is high (over 9000) it leaves me more suspicious of an antibiotic sensitive infection. If it is low with a high lymphocyte count, especially if atypical lymphocytes are present, this is more suggestive of a viral infection. An elevated eosinophil count suggests allergies or parasite infections. The tests also look for anemia and evidence of iron, folate, or B12 deficiencies. It also screens for blood cell cancers and can give evidence of many other problems.

2 -- Sedimentation rate (ESR)-this test is only considered significant medically if it is elevated (i.e. -- over 20). It screens for inflammation. In most people with CFS/ FMS it actually is lower than normal. If it is modestly elevated I look for inflammatory processes more aggressively and will routinely use low-dose Cortef treatment. If it is over 50 in a patient who is over 50 years old, that patient needs to be evaluated for polymyalgia rheumatica, a very treatable inflammatory condition which mimics FMS but is a very different process.

3 -- A general chemistry -- although there are many panels it should include at least a blood sugar (glucose), BUN and creatinine (checks for kidney function and dehydration), SGOT and SGPT (also called alt and ast), bilirubin and alkaline phosphatase (to check for liver and bone diseases), albumin (protein), calcium, magnesium, sodium, potassium, and uric acid levels.

4 -- Iron, TIBC (total iron binding capacity), percent saturation and ferritin levels. These tests check for iron deficiency and excess. Both of these are critical to detect. If the iron is high, it is very easy to treat (donate blood) but can cripple and kill you if it is missed. Iron deficiency will often be present even if the blood tests are technically normal. This is because the blood test's normal range is based on preventing anemia from severe iron deficiency. More moderate levels of iron deficiency, however, can cause fatigue, brain fog, cold intolerance, restless leg syndrome, immune dysfunction, and infertility. Because of this, I usually recommend treating with iron if the percent saturation is less than 22 percent OR the ferritin level is less than 40. I recheck each four months until the blood tests come above these levels.

5 -- Vitamin B12 level. Although normal is anything over 209, evidence suggests that significant B12 deficiency occurs at much higher levels even in healthy people. Other evidence suggests that very high levels may be needed to maintain optimum health in CFS/FMS patients. I recommend that anybody with a level under 540 be treated with B12 shots. A good argument can be made for treating everybody with CFS/FMS with B12 shots regardless of the blood level.

6 -- Thyroid testing. Many doctors will only check a TSH blood test to evaluate thyroid function. Unfortunately, this test is very unreliable in the presence of hypothalamic dysfunction. If the TSH is over three, it strongly suggests that you should be treated with thyroid hormone. I would also check a free T4 level. This checks the level of the active hormone. The interpretation of other T4 hormone tests is difficult because protein binding is altered in CFS. In the experience of many physicians, and this has been supported now by several studies, thyroid blood tests will miss the large majority of people who need thyroid hormone therapy. If you have symptoms of low thyroid (to be discussed in a future newsletter) you should be treated with thyroid hormone regardless of the blood test results.

7 -- A cortisol and DHEA-sulfate (DHEA -S) level. These should be drawn before 9 AM and before eating or drinking anything besides water that morning. If the cortisol is under 14 mcg/dl or if the patient has symptoms of a low adrenal, I would treat with very low-dose Cortef (usually 5-15 milligrams daily which is about equal to 1- 3 mg prednisone). If the DHEA- S is less than 120 mcg/DL in a female or 350 mcg/DL in a male I will usually treat with DHEA. Do not use the DHEA in the presence of hormone sensitive cancers (e.g. breast, ovarian and prostate) unless approved by your physician.

8 -- A urinalysis -- this screens for infections, bleeding, diabetes, and dehydration.

These tests are the most important tests to be done in any patient with CFS/FMS. Many other tests can also be helpful but are less critical.

Hazey
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

ksxroads
Posts: 645
Joined: Tue Aug 02, 2005 8:19 pm
Location: Kansas

Post by ksxroads »

Although some of the treatments for these syndromes can be very expensive, it is often possible to do the treatment protocol in an affordable manner. The key tests that are needed include the blood count (CBC), ESR, general chemistry, free T4 level (thyroid test), vitamin B12, iron, and DHEA-S level. Although many other tests can be very helpful, one can often rely on symptoms alone to make the other treatment decisions. The following medications and supplements can be found fairly inexpensively, and will often be helpful. The Energy Revitalization System vitamin powder (even at only one-half scoop a day) can be an excellent foundation for nutritional support. Flexeril and Elavil, although more likely than some other medications to cause side effects, are inexpensive. Desyrel and Klonopin, in generic form, are also reasonably priced. These four can be very helpful for sleep. Thyroid, cortef, DHEA, and natural estrogen, can also be found for a fairly low price. For infections, nystatin, Nizoral and tetracycline are also inexpensive. Most drug companies offer medications for free to those who cannot afford them. Those patients who are on Medicaid can also do our web site computer program for free.
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation.

Music can be made anywhere, is invisible and does not smell. --W H Auden

Post Reply