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What else if not lyme disease???
MRI ruled out MS. All testing inc. lyme test says I'm fine. I believe it's lyme. My doctor wants me to believe my symptoms are caused by stress. This is not stress and it's getting worse! Two years ago when my husband and I were house sitting he got sick and was diagnosed and treated for lyme. Ever since around that time I have had a series of weird symptoms. Tingling in arms and hands that has since turned to pain and not eased up, now there is pain that travels from place to place including my jaw and neck, supposed rosacea that burns on my face, head aches, ringing popping and pain in my ears, supposed reynoids that started in fingers and toes but now includes hands and feet, eye floaters and not often but halos and explosion of floaters after rubbing my eye, fogginess and confusion inc. not being able to find the right words or saying wrong words, short term memory loss (this is the one that is putting me right over the edge!)
As I feel I must tell my doctor what to do (instead of the other way around) I was hoping someone could tell me what else if not lyme they think I should be considering. No luck finding LLMD yet and doc that treats lyme can't see me until May. Going back to my neurologist this week and want to be prepared. I just figured out this could be lyme about a week ago, so this is all new to me.Thank you so much!
As I feel I must tell my doctor what to do (instead of the other way around) I was hoping someone could tell me what else if not lyme they think I should be considering. No luck finding LLMD yet and doc that treats lyme can't see me until May. Going back to my neurologist this week and want to be prepared. I just figured out this could be lyme about a week ago, so this is all new to me.Thank you so much!
Best Answer
Thank you so much for your comments. The doc I am waiting to see in May treats lyme disease and RA out of Yale. I trust Yale but when I made the appointment I asked the receptionist if this doc is a LLMD and she said "what's that" so I will keep looking. I did ask for a ref. from ILADs so I'm checking my email next. I am in CT and the most ironic part of this is that my GP who had me thinking I was nuts is located in LYME! LOL can you believe it? We find ticks here all the time. My husband got very sick right away and was treated in the ER after his GP sent him home to sleep off the flu. This is just mind bogeling to me. I will get all my tests together, that is a great thought. It become clear as soon as I discovered on my own that lyme might be the culprit that I would have to be my advocate so I've already started a file, which needs to be done since I can't think straight half the time. I'm glad I found this forum. Thank you so much! Have you been treated with success?
... and ONE more thing -- the main organization for LLMDs is ILADS, short for Intl Lyme and Associate Diseases Society.
Their website says they can give referrals to an LLMD if you email to:
contact [at] ilads [dot] org
Their website says they can give referrals to an LLMD if you email to:
contact [at] ilads [dot] org
PS looks like you're in CT -- there are LLMDs not far away, but also lots of Lyme-deniers.
I just searched on google for
LLMD connecticut
and got LOTS of leads.
I just searched on google for
LLMD connecticut
and got LOTS of leads.
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Good for you for pressing ahead on this. Before I forget to say it, be sure you get your own personal copies of all your test results -- including the MRI and everything else that is done. It may save you from being retested, since docs don't believe what patients tell them about what a prior test said, and waiting till later to get copies from a doc's office is often problematic in my experience ... the file clerks have that 'it's time for my coffee break' look in their eyes when they are supposed to go copy your old test results if you ask for them later, so get a full copy AT the appointment. If you don't have them now, start calling. (I know, it's not like you've got a lot of extra time and energy.)
"All testing inc. lyme test says I'm fine." -- You may already know that the tests are very inaccurate, esp the tests that most docs use. Lyme specialists use additional tests, and they will also consider testing for other diseases that the same ticks carry. Seeing a Lyme specialist (LLMD, patient slang for Lyme-Literate MD, meaning a doc who thinks progressively about Lyme) is important. I hope the doc you are waiting to see is in that camp. Take copies of your tests already done to your appointment with the new doc -- as imperfect as the tests are, they are useful to a doc who knows how to read them. What looks negative to a nonLLMD may speak to an LLMD.
"My doctor wants me to believe my symptoms are caused by stress." -- You're not the first to hear this.
"This is not stress and it's getting worse!" -- I hear you.
Your symptoms are all consistent with what I personally experienced and what I have read about Lyme -- but no one here is medically trained, just battle-hardened.
"As I feel I must tell my doctor what to do (instead of the other way around) I was hoping someone could tell me what else if not lyme they think I should be considering." -- I'd focus on Lyme till you have some clearer answers.
"No luck finding LLMD yet and doc that treats lyme can't see me until May." -- So is the 'doc that treats Lyme' (and treated your husband, I assume?) not an LLMD-type doc? An LLMD can be any specialty, it's a mindset. Often the specialists you would think could help, like infectious disease docs, are the most blind to Lyme.
Oh, and call the Lyme doc's office and ask to be put on the cancellation list so they will call you if an earlier slot opens up.
"Going back to my neurologist this week and want to be prepared." -- Be prepared to be blown off ... neurologists are very often unLLMDs -- the official position of their specialty is that Lyme is hard to get and easy to cure with a couple weeks of antibiotics, but due to peculiar characteristics of Lyme, it often doesn't work that way unless it is a VERY recent infection. I saw a couple of neuros when I was very very ill with Lyme and babesiosis (like malaria); they had no diagnosis, and one thought I was flat-out faking.
So ... maybe you'll be lucky and your neuro has an open mind, but be braced for him not to be. Sorry to be Debby Downer here, but none of us has any experience in dealing with a split in the medical community like this one -- until we hit Lyme and its little cousins.
Best wishes -- let us know how you do, okay? We've all been where you are.