a

[Guest guest]

a,

It's tough to say how long i've had this. I began having symptoms of

dysautonomia (Raynauds) about 20 years ago at age 20. About 9 years ago I

developed IBS and also noticed that I began to suffer from mild fatigue. I

was still able to work full time and didn't think anything was wrong. The

gastroenterologist who diagnosed the IBS said I had no infections (he was

wrong because years later my IBS symptoms abated almost completely after

taking artemesia annua recommended by dr. teitelbaum; apparently it kills of

or keeps in check a type of parasitic infection of the GI tract). In late

1996, my left leg became partially numb and I couldn't raise my foot for

about a day. The movement came back but not the feeling. I figured either

I had a pinched nerve or MS and didn't want to see a dr. about either, the

first being to minor an ailment and the second too depressing and their were

no treatments at that time for MS anyway. In Janauary 1997 my arms became

very weak and I lost most coordination in them. I kept missing the keys on

my computer and could barely keep my arms above the keyboard. I also had

heat emanating from the left side of my neck. Within a weak after my

condition worsened to the point I could barely walk, I checked into the

hospital upon the recommendation of a neurologist. I had an MRI, EKG,

echocardiogram, dozens of blood and urine tests and they found no

abnormalities. My neurologist said my sed rate was very low so I had no

infections (a common reason we have difficulty being diagnosed early). A

few days later after complete bedrest, i checked out of the hospital and was

essentially bound to my apartment (except for trips to grocery store) for

about 5 months. During this time I got accupuncture treatments which I

believe helped me recover temporarily. My CFS went into complete remission

for about 6 weeks. I thought that the nightmare was finally over. Then

after working a few 40+ hour weeks and doing all the other things in life, I

had a relapse and was back at square one for about 6 months. Then I had

another 5-6 week remmission and was quickly back to being partially

disabled. I worked about 10 hours a week on average, sometimes not at all

for 2 months then 20 hours a week for 2 months. I found that when I stopped

working altogether, I gradually got a little stronger. All during this time

I saw a total of 9 doctors from every specialty with no diagnosis. Then in

mid 1998 I saw From Fatigued to Fantastic whilke standing in line at the

drug store, bought it, and realized I had CFS. I followed Tietelbaums

recommendations and for a short period experienced some improvement on

hydrocortisone, but it didn't last. I had to keep upping my dose to get the

same benefit. My adrenals were reducing their output in direct proportion

to my supplementation. This is why I believe hydroc. therapy not useful

unless you have below normal cortisol level as evidenced by 24 hr. urine

cortisol test (other cortisol tests arn't conclusive). This belief was

later confirmed by an AMJ study of cortisol use in CFSers which was

discontinued because the patients developed adrenal suppression. Next, I

went to see Dr. Jay Goldstein and my condition was completely neutralized (I

chose this word carefully) for 3-4 months on Nimotop (both physical and

cognitive function was brought back to normal), a calcium channel blocker

given to stroke victims. I developed a tolerance to this and a few other of

the total 30 drugs i tried that were beneficial in the short term only. I

gave up on this approach and began to loosely follow the Cheney protocol. I

noticed some benefit and saw him in October, 1999 and began his protocol in

detail. Its been all uphill since then and I'm back to 90% of normal, both

physically and cognitively. I've gone from about 80% to 90% in the past 1.5

weeks since I began low-dose HGH injections.

Regarding my MVP. I developed this about 3 months after leaving the

hospital (I did not have it while in the hospital as my cardiac tests were

normal). During my two brief remissions (excluding drug induced remissions)

the MVP dissapeared. My cardiologist said this was not possible, that once

you get MVP you've essentially got it for good. I know he was wrong. I

take 1/2 tablet of a 25 mg. atenolol each day. It reduces the MVP symptoms.

If I take more my BP drops too much. I don't know if the MVP is

neuroendocrine in origin as it is with most cases that begin later in life

or if it was caused by an infection. It seems to be slightly worse today

than it was a year or two ago but I'm hoping it will abate somewhat with my

recovery as it progresses. Steve Bullock

Re: Re: Lerner

> Steve, I want to read your posts on the protocol you follow. What is

listed

> in the subject column? Also, you sound from your posts that you are doing

> pretty well right now. How bad were you and for how long? Do you find that

> the MVP symptoms abated as you improved? a

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> This list is intended for patients to share personal experiences with each

other, not to give medical advice. If you are interested in any treatment

discussed here, please consult your doctor.

>