I went to my local infectious disease dept, mayo, today. Cant get into LLMD until November 1 and I have serious issues. Thus mayo.
I had been on doxy 200Mg for about 38 days(prescribed by primary because of aretha migran) when my knee swelled hugely, as did my foot that had been injured seriously 2 years ago. To the point where I cannot walk.
Blood tests showed I have extremely elevated liver enzymes. So high they are doing an ultrasound of liver tomorrow.
Blood test also showed negative for Lyme.
Infectious disease doc said the results would have had to show an antibody for Lyme and there's not. So negatare.
Can someone explain how that can happen? Thanks.
Posted by SickSam (Member # 45330) on :
I'm assuming Mayo used the useless ELISA test? Mayo in Minnesota used the Elisa on me too, it was negative. Then a couple weeks later my western blot from Igenex came back glaringly positive.
Posted by jsnyde2 (Member # 7888) on :
I am sure it was Elisa. But SickSam, if it tests for antibodies, and there certainly would have to have been antibodies in my case. How can an institution like mayo even think about using that test? Wouldn't they want to make correct diagnoses?
Also, can you explain what makes Elisa useless? Like, a technical explanation? I need to understand.
Posted by jsnyde2 (Member # 7888) on :
I suppose there is no point in explaining it to the infectious disease doc. But my elevated liver enzymes make me nervous and I have to work with them for that issue for now.
Posted by SickSam (Member # 45330) on :
I really don't understand it all, my brain is too fried at the moment to take it all in, but here is one technical explanation of the differences:
I think Elisa is more reliable with other diseases, so most docs assume it's reliable for Lyme disease too. Thankfully our LLMDs have come to understand that it's definitely not always reliable.
Posted by SickSam (Member # 45330) on :
Sorry, looks like we posted at the same time! (: Milk thistle helps my liver enzymes stay normal. Maybe that could help in the meantime?
Posted by gz (Member # 43818) on :
Liver support is very helpful with TBD's, doesn't matter what kind of treatment one follows. The TBD's can elevate liver enzymes all by themselves, and proper treatment can bring them back down in that case.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by jsnyde2: How can an institution like mayo even think about using that test? Wouldn't they want to make correct diagnoses?
- No, they DON'T want to diagnose Lyme .. they have NEVER wanted to dx Lyme because they do not want to TREAT it.
Posted by SickSam (Member # 45330) on :
The Mayo neurologist actually mocked me, and told me to "go home, try to get better, and stop searching." He told me if I didn't stop searching I'd eventually find someone to diagnose me with Lyme disease and I'd get doxycycline.
I never mentioned Lyme to him. He's the one who brought it up. At that time I still didn't know what was wrong with me.
So it pains me to know that he actually recognized the signs of Lyme disease, but wouldn't diagnose it.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by SickSam:
So it pains me to know that he actually recognized the signs of Lyme disease, but wouldn't diagnose it.
Antibiotics taken shortly after tick bite can suppress the development of antibodies according to research quoted by LDA. Since the test is an antibody test, this can cause false negatives.
Posted by jsnyde2 (Member # 7888) on :
Just mind-boggling unbelievable! I guess not much has changed in 11 years. I thought it had when my primary doc gave me doxy without testing when the rash presented.
Anyway, yes SickSam we posted at the same time! That is a great link! What you described Mayo told you is what happened to me 11 years ago.
First they did thousands of dollars worth of mri work - clear. The Lyme test was negative of course. Then they wanted to put me on anti-depressants and muscle relaxers.
Apparently they couldn't extrapolate from our meetings that I am about the most well-balanced, happy, positive, active person you can imagine. I think they thought I was a bored housewife because they knew I worked out of my home office.
I found an LLMD all by serendipity, thankfully.
BTW SickSam, where is your LLMD?
[ 10-20-2016, 03:52 PM: Message edited by: jsnyde2 ]
Posted by SickSam (Member # 45330) on :
Yeah, my Mayo bill was like 30k. Thankfully my insurance paid without blinking. The infectious disease doc at Mayo was actually the best one of them all, but she didn't know what was wrong with me. She checked for tons of stuff though.
I see Dr. C in Missouri. He's a great doc. I've been through a few LLMDs though... He's my favorite. Glad to hear you found a LLMD!!
Posted by sparkle7 (Member # 10397) on :
Unbelievable... If a doctor "mocks" you - I would get the heck out. I would never pay someone who "mocked" me... Remember - we pay their salaries - even if it is through insurance. It's just plain disrespectful. It's OK to get angry.
Posted by Bid3 (Member # 47299) on :
My understanding (per my doc and other sources) is that the Blot test could take 6 months or more to show clear as the test if for antibodies not the bug that is causing your issues. It takes a while for the antibodies to move on. Do not trust post testing. It really needs to be based on symptoms.
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