posted
Hi all, just wanted to know if anyone knows a good piece of information to better help my doctor believe my health problems are from Lyme and not MS or Fibromyalgia.
Thank You
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Do you have a Lyme antibody test you can show the doctor?
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8888 | From Illinois | Registered: Aug 2004
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I am 48. I got sick at 19. No one knew what was wrong, i had flu like symptoms. I was given amoxicillin and humibid. Sent me into anaphylaxis (sort of, severe pain, was told internal angiodema).
Symptoms got worse with time, numbness, tingling, a laundry list. Then docs said MS bc I had the white lesions in my brain. I called BS. Quit going to docs.
Fast forward 10 years, i found lyme disease and had almost every symptom. Went to doc and said test me, i was positive. Doc sent me to a rheumatologist who stated right out the gate it was a false positive as i had never traveled up north. Quit going to docs again. (Btw, i do not test positive anymore since CDC changed testing)
Started going to doc after doc for the past few years and it is always a brick wall. Every test pretty much shows i have nothing wrong, i am picture perfect per them at 88 pounds, yet every day is a struggle.
oh , also had bartonella henselae sequenced from my blood by a very renowned doc at a vector lab. But any bart test in a docs office is neg. So again treated like i'm crazy.
Allergic to so many meds i take nothing as i am terrified of another reaction and i am not allergic to these meds nor do i have mast cell per docs.
Sooooooo much more to tell but like everyone else here i'd be typing forever, and sorry this wasnt short after all!
Thank you for any advice
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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posted
I would love to do that but i never have the funds to do so. Correct me if i'm wrong but i thought all those tests done outside the doctors are costly.
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
They are a bit expensive but worth it so you can show MD a real positive test.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8888 | From Illinois | Registered: Aug 2004
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posted
Any suggestions on the cheapest reliable lab? Igenex is like $500 and upwards. Not able to do that. I saw western blot i think for $125 but idek what that covers and my brain is not cooperating
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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posted
Thank you, still cant afford that but i appreciate the help.
No i cannot find a doc. They just go off the neg test now and dismiss the bartonella being sequenced bc their test is neg. Its been a long dead end road.
I refuse to take any meds bc no one can tell me why i react so i might be shootin myself in the foot so to speak but its not fun to almost die with no reason.
Posts: 117 | From Winston Salem NC | Registered: Sep 2008
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posted
I think you will find this link to be extremely informative and you should most definitely give it to your doctor. It was written by one of the top LLMDs. I do think, however, that instead of trying to convince him/her you should find a LLMD (Lyme-literate doctor) instead to get properly treated.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
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