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Nueropathy and Lyme or MS
I have been tested by a critical care assessment and was told I was showing neurpathy in left arm and leg. Is this typical for Lyme or MS? I am so confused with all my symptoms. Both legs hurt, twitch, muscles roll. I get leg weakness and it doesnt affect my feet except buzzing in the left foot that changes form day to day. HELP??? My symptoms are different eveyday only constant is leg tenderness in the thighs and twitches in my calves. Dr.s are so confusing and dont know whats going on. I have had a ton of testing. Neuro says clear and rheumy says clear excpet for and elevated RA test. LLMD says lyme. I just dont know anymore. Getting so tired of the symptoms, and worried...
Thanks Cyn
Thanks Cyn
I saw at least a dozen doctors before I went to an LLMD. None of them had answers for me either. If multiple other reputable doctors are stumped and a reputable LLMD says "Lyme", odds are really high that you have Lyme. It's unlikely some antibiotics will hurt you, but if taking some causes herxing or you start getting better, then you'll have your confirmation of Lyme. (Note: not everyone herxes.) I encourage you to go back to the LLMD, tell him/her you have doubts, and ask where to go from here. The reason the LLMDs won't go away and the controversy won't die out is because of thousands of patients just like us who are not treated properly by "mainstream medicine."
You can see from your own experience why it can be so tricky to diagnose and treat Lyme Disease. It mimics other diseases, and it's impossible with current antibody tests to know if someone is currently infected. You could always try the new culture test from Advanced Laboratories. They're saying they have a 94% specificity rate, which means they find 94% of actual cases of Lyme. (They don't have false positives. They can't grow something if it isn't there.) Even if your insurance won't pay for it, you could pay for it yourself and have information that would help you decide how to proceed. This would be worth the money to get answers. (I spent three times this amount on blood tests when I was desperate enough for answers.) Going down the MS road if you actually have Lyme will make you worse.
From what I've understand, when Lyme is gone, the body will eventually stop making antibodies. If you're making new ones, that suggests ongoing infection. If your body is continuing to produce IgM antibodies, those are not the long term "protective" ones that linger after an infection. Those are the current fighting antibodies, suggesting that you're still infected. After 5 years of infection, I ONLY had IgM antibodies, and I was really sick.
I had to go through a process of disbelief before I got myself to an LLMD. I just couldn't comprehend how so many "good" doctors could be so wrong about Lyme Disease. It is still unbelievable to me, but now I understand how doctors are taught to believe what they're told by their professors, residents, seniors, and especially by "the experts", those ivory tower researchers who do studies and sit on committees that decide "best" treatment recommendations for disease. Doctors are rarely disciplined or held liable for following the "standard of care," even if the patient dies from insufficient treatment. However, they can be disciplined for going beyond the "standard of care," even if the patient agrees with the treatment and is helped by it.
I assumed everyone had the patients' best interests in mind, for that is the purpose of medicine, right? Um....not so much. The "experts" are rarely treating physicians. They are often researchers with personalities more suited to doing studies, writing papers, speaking at conferences, and sitting on committees. They are more interested in their careers, their reputation/prestige, developing new patents, and bringing enough money/funding into their research institution. Epidemiologists are more interested in preventing panic than they are in admitting they don't know about something and will tend to say reassuring things that give false impressions, rather than see an emerging disease for what it really is.
I think there are a whole lot of closet believers in chronic Lyme out there in the medical field. But until they feel free to treat it as needed, they'll be stuck in the current restrictive guidelines. So, get thee to the LLMD! ;)
You can see from your own experience why it can be so tricky to diagnose and treat Lyme Disease. It mimics other diseases, and it's impossible with current antibody tests to know if someone is currently infected. You could always try the new culture test from Advanced Laboratories. They're saying they have a 94% specificity rate, which means they find 94% of actual cases of Lyme. (They don't have false positives. They can't grow something if it isn't there.) Even if your insurance won't pay for it, you could pay for it yourself and have information that would help you decide how to proceed. This would be worth the money to get answers. (I spent three times this amount on blood tests when I was desperate enough for answers.) Going down the MS road if you actually have Lyme will make you worse.
From what I've understand, when Lyme is gone, the body will eventually stop making antibodies. If you're making new ones, that suggests ongoing infection. If your body is continuing to produce IgM antibodies, those are not the long term "protective" ones that linger after an infection. Those are the current fighting antibodies, suggesting that you're still infected. After 5 years of infection, I ONLY had IgM antibodies, and I was really sick.
I had to go through a process of disbelief before I got myself to an LLMD. I just couldn't comprehend how so many "good" doctors could be so wrong about Lyme Disease. It is still unbelievable to me, but now I understand how doctors are taught to believe what they're told by their professors, residents, seniors, and especially by "the experts", those ivory tower researchers who do studies and sit on committees that decide "best" treatment recommendations for disease. Doctors are rarely disciplined or held liable for following the "standard of care," even if the patient dies from insufficient treatment. However, they can be disciplined for going beyond the "standard of care," even if the patient agrees with the treatment and is helped by it.
I assumed everyone had the patients' best interests in mind, for that is the purpose of medicine, right? Um....not so much. The "experts" are rarely treating physicians. They are often researchers with personalities more suited to doing studies, writing papers, speaking at conferences, and sitting on committees. They are more interested in their careers, their reputation/prestige, developing new patents, and bringing enough money/funding into their research institution. Epidemiologists are more interested in preventing panic than they are in admitting they don't know about something and will tend to say reassuring things that give false impressions, rather than see an emerging disease for what it really is.
I think there are a whole lot of closet believers in chronic Lyme out there in the medical field. But until they feel free to treat it as needed, they'll be stuck in the current restrictive guidelines. So, get thee to the LLMD! ;)
I am taking samento teasel ldn and supposed to start minocycline. I just feel so exhausted with symptoms. Mainly the nueropathy pain. And all sorts of other weird sympoms. I had to cancel a vacation because I just don't think I can do hot weather. My igenex lab test came back with a Ton of bands but my more recent has come back with band 41 and 23 and a supposed past infection for babesia. But I guess I'm in Lyme denial and have diagnosed myself with everything as everything mimics each other. Honestly I feel crazy and anxious anymore.
Hi,
I know the frustration you feel. I was told I had MS among other illnesses. I have told this story before, I took steroids and wound up on a respirator in the hospital.
I have improved since starting Lyme treatment. If your LLMD has positive tests for Lyme I would stick with that. Like Jackie said, mainstream doctors don't believe in Lyme so they give you other labels that fit your symptoms. You don't want to take steroids and wind up in the hospital like I did.
If you didn't have Lyme a good LLMD wouldn't say you did.
Let us know how you are doing.
I know the frustration you feel. I was told I had MS among other illnesses. I have told this story before, I took steroids and wound up on a respirator in the hospital.
I have improved since starting Lyme treatment. If your LLMD has positive tests for Lyme I would stick with that. Like Jackie said, mainstream doctors don't believe in Lyme so they give you other labels that fit your symptoms. You don't want to take steroids and wind up in the hospital like I did.
If you didn't have Lyme a good LLMD wouldn't say you did.
Let us know how you are doing.
Neurologists and rheumatologists overall do not believe in Lyme as a serious and persistent bacterial infection. And since they don't believe in Lyme, the only possibility they have then is to say "MS". MS is treated with immune suppressants, which shut down your immune system. If you have an infectious disease (like Lyme), the last thing you want to do is suppress your immune system.
I would ask the Lyme doc on what tests s/he is basing the diagnosis, and get copies of the tests that have been run. Let us know what you hear, we're always happy to comment in our non-medically-trained way.
Separately, try magnesium supplements, any kind ending in "-ate", like magnesium citrate, malate, orotate, etc. and see if it helps you twitching and aches. Lyme bacteria use up magnesium in your body, and it is magnesium that carries messages between your muscle cells about when to relax and when to contract. When the messages get messed up, the cells don't coordinate properly and the muscles contract and relax out of coordination with each other. Hence aches and cramps.
I like magnesium malate, or a brand called Magnesium CAO, which has three types of magnesium: citrate, aspartate and orotate. Available at stores and online. The American diet is apparently deficient in magnesium generally, and when Lyme starts using it up, one can get deficient pretty fast.
Anxiety is also a big part of Lyme, and magnesium will soothe that too, like a floppy baby after a warm bottle (there's magnesium in milk.)
I would ask the Lyme doc on what tests s/he is basing the diagnosis, and get copies of the tests that have been run. Let us know what you hear, we're always happy to comment in our non-medically-trained way.
Separately, try magnesium supplements, any kind ending in "-ate", like magnesium citrate, malate, orotate, etc. and see if it helps you twitching and aches. Lyme bacteria use up magnesium in your body, and it is magnesium that carries messages between your muscle cells about when to relax and when to contract. When the messages get messed up, the cells don't coordinate properly and the muscles contract and relax out of coordination with each other. Hence aches and cramps.
I like magnesium malate, or a brand called Magnesium CAO, which has three types of magnesium: citrate, aspartate and orotate. Available at stores and online. The American diet is apparently deficient in magnesium generally, and when Lyme starts using it up, one can get deficient pretty fast.
Anxiety is also a big part of Lyme, and magnesium will soothe that too, like a floppy baby after a warm bottle (there's magnesium in milk.)
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