Minocycline & my LOST summer

[Guest guest]

" Snowdrift " asked if anyone has tried Minocycline. I will be starting

on it Oct. 10 if all goes as planned.

I was diagnosed with Polymyalagia Rheumatica last July, after having a

temporal biopsy where the surgeon removed 2 " pieces of artery from each

temple to determine if I had Giant Cell Arteritis. My doctors decided I

did not have the latter. I was put on 80 mg. Prednisone/day even before

I had the biopsy since it would be the treatment if I did. The danger

with Giant Cell is that is can suddenly cause permanent blindness, and

my Dr. did not want to take any chances in case I had it.

80 mg. of Prednisone/day made a zombie out of me. I couldn't sleep, I

was roaming around the house all night and day, cleaning cupboards and

drawers, making " honey-do " lists for my husband re things I was noticing

during my roamings. I couldn't sit still or concentrate enough to read,

I had to be on the move all the time. I went wild shopping, very

unusual for me, and bought weird things, like a teapot that didn't have

a lid even though I had 5 useable teapots at home. I couldn't explain

why, I just wanted it. After reading a " free " ad for a dog, I insisted

at looking at it and insisted we take him, even though he was 109 lbs

and very frisky! He's Akita and German Shepherd mix, a wonderful 4 year

old dog, but not at all what my husband or I needed at that time. My

poor husband had learned that it didn't do any good to say no to me

during my Prednisone high.

Prednisone seemed to stop my aches and pains, cleared up painful eczema

and some psoriasis I had on my hands, cleared up lichen planus on my lip

and inside my mouth, BUT...

no one told me that I could get hooked on it and I did. My Dr. wanted

to get me off of it as soon as possible so gave me permission to cut my

dosage by 10 mg. whenever I felt I was pain free, but not to do it too

fast. I must have done it too fast, going from 80 mg./da early July to

20, then 10 mg. da. late August-early September. I started having

terrible shaking episodes where I shook so bad my teeth " chattered " . I

thought I was losing my mind, then I thought maybe it was low blood

sugar, so when I'd start to shake I'd drink Gatorade or orange juice. I

learned later that Prednisone /elevates/ blood sugar, so I went the

wrong direction. My kids teased me that I was having withdrawal. I

looked on the internet and asked my family Dr., and yes indeed, that's

what it was. When those episodes got fewer and fewer my family Dr. said

I could start decreasing Prednisone again from 10 mg/ day to 9 for a

week, if that went well, to 8 for a week. I got down to 6 but then

started with stiffness and aching hip joints, no energy, leg cramps

during my sleep. My Dr. suggested going back up to 10 mg/da, which I

did. Then I just didn't feel good all over, slept all the time, was

chilled even on warm days. My sed rate had returned to normal in late

August from 65 but then unexplainedly jumped to 119.

I had low grade fever. the following 2 sed rates were 89. A woman my

age should be somewhere around 30 or under. My Dr's only advice with

each of the sed rate readings was to/ increase/ Prednisone. I decided I

would NOT go through that again, as I'm still having an occasional

" shakedown, " I said no, there has to be something better out there.

I called my nephew who had been diagnosed with RA several years earlier

at age 33. He went the usual route with Prednisone, then drugs through

a rheumatologist which had serious side effects.(they were actually

cancer chemotherapy!) A college wrestling buddy of his told him about

a Dr. Sinnott in Ida Grove, IA who used a totally different therapy

for inflammatory rheumatic disease. Ida Grove is a very small town with

a small hospital. Sinnott believed that these so called auto-immune

diseases were caused by left over bacteria from a previous infection of

some kind. these bacteria remained in the body, beyond detection,

increasing slowly and manifested by attacking joints, heart valves,

eyes, etc. He believes one needs to treat the CAUSE of the disease, not

just the symptoms as Prednisone, Methotrexate(?) and other drugs do, all

of which have serious side effects and don't stop the disease, just mask

it. Sinnott has treated hundreds of people long term, low dose with

about an 80% success rate, with Minocycline and Tetracyline, old time

drugs with few if any side effects.

He has patients from many states and 6 foreign countries who come to

him. I have an appointment with him Oct. 10. He requires new patients

to read one of 3 books. I'm reading /The New Arthritis Breakthrough/,

by Henry Scammell. It contains another book, /The Road Back/, by the

later Dr. McPherson Brown, a pioneer in antibiotic treatment for

R.A., mentor of Sinnott. It's not a new book, published in 1998(?). I

bought a used one on Amazon.com, $7.98 including shipping. Sinnott

wants patients self-educated, to understand their disease and the

treatment to come, and to be an /active /part of their treatment. I

like that approach. I will have a consultation with him, then begin 2

IVs a day for 5 days of Minocycline, beginning low dose, then

increasing. I will see him again before I leave, and receive a

prescription for Minocycline or Tetracyline. It may be a long term

therapy, but is free of the serious side effects of the drugs used to

treat symptoms. I will go off Prednisone VERY SLOWLY his nurse says.

My nephew says " He (Sinnott) saved me. " His buddy's mom has been

totally drug free for 3 years with no symptoms of her previous

Rheumatoid Arthritis.

http://www.sinnottandtobenmedarts.com/

http://rheumatic.org/started.htm

Sorry to take up so much space, folks, but I wanted to respond re

Minocycline, and suggest that those taking gold treatments,

Methotrexate, and other strong drugs, take a look at these sites and

this belief. It is not well accepted by most medical doctors,

definitely not accepted by drug companies who make a lot more profit off

of arthritis drugs than minocycline/tetracycline. Economics & Politics

play a BIG role in what drugs get promoted, and which treatments get the

blessing of the power brokers. To me as a patient and sufferer from

PolyMRheu/Prednisone, I think Sinnott's group's argument makes very good

sense, and I'm going to try it! Stay tuned and wish me luck!

B. Hannon, Iowa