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Sarcoidosis?

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Sarcoidosis?

Posted by
Todd on February 07, 2003 at 15:02:53:

I have recently been diagnosed with sarcoidosis. Maybe that is. The Docs want to call it something and for now are calling it that, despite a lack of sarcoids in the biopsys.
I am 27 and had similar symptoms back about 4 years ago. symptoms consisted of high sed rate up to 120, low Hg around 9, enlarged lymph nodes in the abdomen, night sweats, extreme fatigue, high fevers up to 104.5, but normal white count.
I have been tested for lymes, mono, and every bacteria and fungal infection they can think of. I also had a bone marrow biopsy that showed nothing,and a CT needle lymph node biopsy. Every Dr that I see is convinced it is cancer at first but can find no evidence.
After about 6 months the symptoms slowly went away. I was left with occasional extreme joint pain in my hips and knees, but with 2 vioxx a day for 3 days it would go away.
Unfortunately everything returned again back in June. The possibility of lymphoma was suggested by the docs so I had 2 more bone marrow biopsys, a node removed from my groin and checked and finally a splenectomy. Nothing showed anything of real use. My spleen was enlarged about 3 times normal. About 600g. They suspect Sarcoid but none of the reports mention finding sarcoids. My sed rate has been up to 120 and have a C reactive protein of 14.5. After removing my spleen my Hg did increase to 14.5. It seems I had many inmature red blood cells running around because my spleen was "eating them all". I was put on prednisone for 4 months and sed reat droped to 24. But after being off for only 3 weeks it went back up to 60. The sweats and fevers returned.
I am now seeing a local Dr who specializes in alternative medicine. He has me on the comprehensive elimination diet and taking Ultrainflamx and ultraflora.
On thinking back just before this last outbreak, I consume a lot of Mountain dew and at the time was taking some of the metabolism enhancing pills from gnc. Probably loading up on caffeine and other toxins. I have always consumed a lot of MD, in the 6+ can a day range, fortunately no tooth problems.
I have been off all soda and most everything else for a week now, and feel a little better, but not sure if it is the prednisone that is making me feel better or what. I know a week isn't long at all.
With such a very sudden onset of symptoms after eating the same for so long is it possible this is food related, or maybe something nobody has yet thought of? Most of my workup by the docs this last time was done over a month period at the Mayo clinic. They even gave up.



Re: Sarcoidosis?

Posted by Sally on February 08, 2003 at 08:38:05:

In Reply to: Sarcoidosis? posted by Todd on February 07, 2003 at 15:02:53:

My friend's son, 19, is now going through this and loaded up with prednisone as well. He's just started walking again. This site is all about immunity disorders. Click on the "Articles on Health" in upper right corner of BB page and start with "leaky gut syndrome" while you wait for Dr. Stoll to answer.

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Re: Sarcoidosis? (Archive in wellness.)

Posted by Walt Stoll on February 08, 2003 at 09:02:41:

In Reply to: Sarcoidosis? posted by Todd on February 07, 2003 at 15:02:53:

Hi, Todd.

I am not sure that I have the answer to your diagnosis either. However with all the evaluation you have had, without a solution, I can feel pretty confident that this falls in the area of autoimmune conditions.

Your very best bet at this time is serious wellness, if you want to see this clear within a year. Ask your alternative doc about the program and I am sure he will say that, if you are willing to put out the effort, it can only help.

See the home page article "How to be Healthy" for a free protocol. See the glossary for any unfamiliar terms and see the archives for more wellness info.

Let us know what you learn and how you do.

Walt

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