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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!
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A thought that came to me.... my doctor has never specified how long it might take me to get well. A true LLMD knows that some patients are trickier than others, and gives antibiotics for 1-2 (some say "several") months AFTER all symptoms are completely gone. This is because the spirochetes are known to ball up into cysts to hide. They go dormant for a while, then come back out when the antibiotics are gone.
I don't know who you're seeing, but if a doctor is insisting on the first visit that you'll be "cured" in just 30 days, I would be cautious. If he wants you to stop the antibiotics in a month, insisting you're cured even though you don't quite feel normal, or if he tells you that your symptoms will slowly resolve over time, find a different one.
Some doctors have picked up on the "LLMD" terminology and describe themselves as one even if they have nothing to do with ILADS and don't necessarily follow the ILADS treatment recommendations. The primary thing to remember is that the ILADS philosophy is that every patient is different and needs to be treated as needed, and that antibiotics need to be used for an extended period of time in combination and in rotation until after all symptoms have resolved. (Of course there is an exception for permanent damage, but that needs to be confirmed first.)
I'm glad you're getting treatment! That's great!
I don't know who you're seeing, but if a doctor is insisting on the first visit that you'll be "cured" in just 30 days, I would be cautious. If he wants you to stop the antibiotics in a month, insisting you're cured even though you don't quite feel normal, or if he tells you that your symptoms will slowly resolve over time, find a different one.
Some doctors have picked up on the "LLMD" terminology and describe themselves as one even if they have nothing to do with ILADS and don't necessarily follow the ILADS treatment recommendations. The primary thing to remember is that the ILADS philosophy is that every patient is different and needs to be treated as needed, and that antibiotics need to be used for an extended period of time in combination and in rotation until after all symptoms have resolved. (Of course there is an exception for permanent damage, but that needs to be confirmed first.)
I'm glad you're getting treatment! That's great!
Thank you. I ended realizing Yale would not help me through my ecperiences with ENT there and because of this site. I did find an LLMD in NY and he knew exactly what I was talking about. It felt so good to have someone validate you after hearing nothing but that I was stressed, had anxiety, basically I was crazy.
I know someone who went to Yale with Lyme and had no luck at all. No LLMD's. You would think Yale would have it but no. He wound up going to someone else, I will find out the name for you if you would like.
Saw the LLMD today and started treatment this afternoon. He seemed to think 30 days would "cure" me. Maybe I'm being to hopeful but I'm going with it for now. I did have one band on the western blot show up. The GP had her assistant call me and say all my tests were negative. I insisted on having them fax me the all my blood work. I had to pester them daily for four days until I got it. On the western blot (which I demanded they do) she had written negative and underlined it three times. I have been telling her my sympotms for two years. On my last visit I told her I stutter sometimes and I have alot of floaters in my eyes and I just can't think clearly. Even though she aggred stress does not cause floaters she still insisted all my problems were "stress" and offered no explanation for the floaters. I guess I am going off on this rant because I feel hurt. I just can't wrap my head around this yet. But, I also feel lucky as I said in my other post. Thank you for your help. It has meant the world to me.
thank you, both of you. I hope someday soon I can help people as you all have helped me. I see the LLMD next week so I'll let you know what happens.
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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.