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Methotextrate

Hi Trish,
Basically there are certain indications that you are getting better. You
RD should be examining your joints to see if there is any fluid in them,
questioning you about your morning stiffness, seeing how your range of motion is being affected by making you raise your arms etc.
By checking these things every month including your blood tests he/she can tell when you have made a vast improvement and you will know as well. All of a sudden you won’t have much to complain about. That’s the point they ideally want you to reach.
There was a point where I couldn’t take away even one anti inflammatory or I’d feel it right away. I would stiffen up but now I’m at the point where I don’t feel this and so I can skip a dose every now and then and am trying to reduce my NSAIDS to 2 per day instead of three.

Cheers,
Catherine

Sarcoidosis and antibiotics

> 1.When was your wife diagnosed with Sarc?

February 2004

> 2.does she have any illnesses other than sarc?

not that we know of, although there have been
tentative/conflicting/rude/negligent diagnoses of Fibromyalgia, Lupus
and “it’s all in your head”
(her daughter and mother have had spinal/neurological problems – her
grandmother and great-grandmother have had what was thought to be an
arthritic type of problem, perhaps RA – one walked with a cane most of
her life, the other in a wheelchair)

> 3.Is she on any other medication than Minocycline?

Benicar 40mg 3x daily

> 4.What dosage has she started with?

she started Mino at 25mg (after being on Benicar for 1 week), then
jumped to 50mg (for a few short weeks), then to 100mg which she’s on
now (always every 2 days)

> 5.when did she begin having problems walking?

fall 2003

> 6.What type of pain meds. is she using and how effective are they?

suffice it to say that Neurontin and Morphine do nothing for the pain
- within about 60 minutes of taking her pain med, she can walk fairly
normally – without it, she usually limps very badly and must slide on
her bum down the stairs

> 7.when did the constant pain in her joints, bones, muscles begin?

sometime in 2002

> 8.when did the headaches begin?

around 1996 she started having constant headaches
(lower back pains since 1985, but not constant)

> 9.when did the weakness and fatigue begin?

fall 2003

> 10.when did the vision problems,

spring 2003

> 11.Does she have sarc in her eyes?

we’re not sure, but a doc said she has a blood clot in one of the eyes

> 12.when did the swallowing and breathing problems begin,

fall 2003

> 13.Does she have sarc in her lungs?

yes – biopsy-confirmed

> 14.when did the bladder control difficulties start?

fall 2003

The only symptom which had dramatically improved is the breathing
difficulties (which did so after eliminating Vitamin-D from her diet
and minimizing sunlight and before starting the MP – however, she
does still feel her throat close up on occasion but not as bad as
before) – it was rather frightening at its worst (checked into ER once
because of it).

Swallowing and bladder control are a little bit better. She also has
temperature regulation problems, profuse sweating and dizziness and
nausea (the latter two seem to be tolerable when she takes a glass of
V8 with the Benicar). I believe someone at the marshallprotocol forum
mentioned the V8 trick. She’s measured her blood pressure fairly
regularly while on the MP and it has always been normal.

Hope this helps.
She had very bad reactions to her flu shot fall 2003 and tetanus shot
at Christmas 2003 – both started within several hours of the shot and
lasted a few short days – pretty consistent with Herxheimer. She also
had a very bad respiratory reaction to a 3D CT scan dye in January
2004 within seconds of it being administered and lasted several more
seconds (couldn’t breathe) – she wasn’t too well for the next few days
which may have had nothing to do with the dye but we’ll probably never
know – she’d had the shots and dye in the past without problems.

My wife has just started phase II of the MP – she’s now introduced
Zithromax which will be taken every 8 days, starting at 62mg, along
with the Benicar and Minocin.

Questions re your symptoms with Sarc

Hello Everyone,

I just joined the group. I have not been diagnosed with Sarc but
will be seeing a different physician this week and will discuss this
new work, test, etc in abspharm canadian pharmacy. Have had long-term illness, and was diagnosed
with undetermined rheumatic illness about 7 years ago. I was
treated very successfully for about 6-7 years with Dr. Thomas
McPherson Brown’s low-dose antibiotic protocol — but always
periodically would have unusual big, isolated problems, but for the
most part was still feeling pretty well. It has been the last year
and a half that it has kicked into the ENS (neurological system
symptoms)and I am definitely going the wrong direction.

Am wondering if any of you have as symptoms: Dupuytren’s
Contracture, some type of lump in the arch of your foot or
elsewhere, and do you have neurological symptoms?

If none of the above, what are some of the symptoms that usually
accompany Sarc?

Thanks for your answers and your help,
bg

Beth advises Kim

kim,
i used to be the kid who was teased all through my school years
because i was “the fat kid”. i sympathize…i don’t know how to
handle it though, other than transfer to another school (drastic, i
know!) all i know to do is to try and ignore them and don’t let them
get to you, which is virtually impossible, i know. just know this:
they may be pretty and popular, but their popularity will go away the
second they start college, and their looks won’t last forever
either. about the cutting: i think you should sit down with hope and
talk to her about it…don’t assume that she’ll turn you away. from
what you’ve said, she is a wonderful woman. you did not cause your
father to abandon you, that was his choice and his own doing. you
did not cause it. you are not a bad person for any reason, and don’t
go thinking differently. take it from me — if you can make it
through high school, you can make it through almost anything.

–beth

Kimberly and Beth about depression

Kimberly, also… you are going to have bad days. There will always
be jerks in the world. You don’t have to relapse. Even people without
depression have bad days. Don’t feel bad or beat yourself up.
Tomorrow is a new day and anything you want in the world is possible
if you believe in yourself!! It sounds trite but it is true!! Very
soon, you will be out of high school and never see those people
again. Next time you should laugh in their faces. It really is
pathetic for a bunch of “popular” high school kids to actually stop
at someone’s locker and be mean to them. They sound like a really sad
group of people!