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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
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.)
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.
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.
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! ;)
P.S. I had several MS-like symptoms, too, and went through 3 neuros and a full MS workup. I even have about 20 brain lesions! I don't have MS. Even the MS specialist said that. I have neuro Lyme.
If you'd like to read about how Lyme mimics MS, just do some google searches such as "Lyme MS' or "Lyme mimics MS." There are a lot of mentions out there.
If you'd like to read about how Lyme mimics MS, just do some google searches such as "Lyme MS' or "Lyme mimics MS." There are a lot of mentions out there.
Thank you for your info and help. I get desperate at times. Today I had a decent day and then wam at around 2 pm my eyes started getting strained and legs started To ache and pressure in my head. It's like I can't trust my day to day how I'll feel.. My leg muscle cramp especially my left. It's just awful. I have an LLmd who is great but maybe it's my denial that's stopping my progression. Just fed up with how I feel. I worked on a cow farm for sometime on weekends while going o college and pulled tics off me like it was no big deal, boy was I stupid.....
P.S. I have no faith in dr.s I do most of my own research and glad I have decided to join the message boards. You all are a great help and give me hope...
It's better to have Lyme than MS because there is a cure even though it can be long and hard.
My pharmacist told me about a friend of hers who spent 20 years in a wheelchair with "MS" she learned about Lyme, saw an LLMD and is finally walking again. Such a waste.
And feel better, anxiety and depression can come as a side effect of Lyme or a co-infection.
My pharmacist told me about a friend of hers who spent 20 years in a wheelchair with "MS" she learned about Lyme, saw an LLMD and is finally walking again. Such a waste.
And feel better, anxiety and depression can come as a side effect of Lyme or a co-infection.
You weren't stupid in pulling the ticks off of you ... the ticks were stupid to bother you! There are ticks everywhere, on pets, in city parks, you name it -- not just on farms. We are all exposed and just don't know it.
Don't be afraid of a Lyme diagnosis -- it's the first test to getting well, if it's what you have. I had Lyme and babesia, and it's a miserable combo. My doc treated the babesia first, and I felt a lot better already! Then Lyme treatment, and I was officially healthy again. I was tired and my body was worn out from the fight, but slowly and surely I regained my energy and strength.
Don't be afraid of treatment, either. Part of Lyme is that it messes with your moods and thought process, and makes it hard to think things through. Try the magnesium supplements and see how you feel -- it helped me a lot -- but it doesn't treat the infections, just lessens some of the side effects of the infections.
Be not afraid! We're pulling for you. Keep us posted, okay?
Don't be afraid of a Lyme diagnosis -- it's the first test to getting well, if it's what you have. I had Lyme and babesia, and it's a miserable combo. My doc treated the babesia first, and I felt a lot better already! Then Lyme treatment, and I was officially healthy again. I was tired and my body was worn out from the fight, but slowly and surely I regained my energy and strength.
Don't be afraid of treatment, either. Part of Lyme is that it messes with your moods and thought process, and makes it hard to think things through. Try the magnesium supplements and see how you feel -- it helped me a lot -- but it doesn't treat the infections, just lessens some of the side effects of the infections.
Be not afraid! We're pulling for you. Keep us posted, okay?
Neuropathy is common with Lyme, I am totally natural and take Multi B complex, Alpha Lipoic Acid and biotin for the neuropathy. Helps me immensely
How are you doing these day? I remember the good news when you said you'd reached remission! I am hoping you're still feeling good.
I have to tell you that your symptoms VERY MUCH sound exactly like mine when I first developed symptoms after my gallbladder surgery. I also had numbness in my face, feet and leg in addition to all you describe.\
I have lyme (dx by Igenex) and test positive time after time.
Sounds like lyme to me for sure!
I was screened for MS at UCSF and despite having 20+ lesions on my brain, they say this isn't MS. They say it's not lyme either though because my spinal tap did not show lyme but that is pretty typical I guess. I have made improvements with ABX but it's a long journey.
I have lyme (dx by Igenex) and test positive time after time.
Sounds like lyme to me for sure!
I was screened for MS at UCSF and despite having 20+ lesions on my brain, they say this isn't MS. They say it's not lyme either though because my spinal tap did not show lyme but that is pretty typical I guess. I have made improvements with ABX but it's a long journey.
How sad that a renowned and otherwise splendid medical center (UCSF, short for the University of California at San Francisco) is still using spinal taps to diagnose/rule out Lyme.
Sigh.
Sigh.
Seriously..... There are two separate articles from the Lyme Disease association today showing that ticks tested positive for lyme in Southern California (where I grew up). One was in my sister's local newspaper today too.
And these doctors say lyme doesn't exist in California....
I'm grumpy today!!!!!!!!!
And these doctors say lyme doesn't exist in California....
I'm grumpy today!!!!!!!!!
I am still enjoying remission, hopefully I can avoid reinfection this summer, though thats highly doubtful.
Thanks for all your support, I also get shortness of breath These day and buzzing in left foot from time to time. I am going to start the salt c protocol. Has anyone done it before? I've also been doing acupuncture. Which seems to help a little. I'll give you my exact test results once I find them. Brain doesn't always function either.
Shortness of breath, buzzing in the foot , brain fogs are all symptoms but I have not heard of the salt protocol.
I am still enjoying remission, hopefully I can avoid reinfection this summer, though thats highly doubtful.
doing pretty good, still in remission. Hoping for no re-infection this year, though thats highly unlikely.
Sorry you're feeling so crummy. I remember that feeling well.
Lyme can cause shortness of breath, but Babesia is more likely to be the cause of that particular symptom. Chronic shortness of breath was my second chronic symptom after fatigue. After thinking it was from Lyme for nearly a year, my doc & I finally concluded I did indeed have Babesia. Turns out I have a stubborn case that's been hard to treat.
You could try some herbals to see if you have any Babesia herxing on them. (CryptoPlus, Enula, Artemisinin, A-Bab, Bab-3). I didn't have any reaction to three different ones early in Lyme treatment. I did after the Lyme infection was greatly reduced. My first reaction is a worsening of my shortness of breath and air hunger, dull headaches, fatigue and malaise. After starting Malarone, my spleen became enlarged, which is has been now for months.
I think that Lyme patients with Babesia often feel worse than people with just Lyme. Babesia all by itself can be disabling due to the fatigue and malaise. You might try testing for it. While mine were negative, a lot of other people do test positive.
Lyme can cause shortness of breath, but Babesia is more likely to be the cause of that particular symptom. Chronic shortness of breath was my second chronic symptom after fatigue. After thinking it was from Lyme for nearly a year, my doc & I finally concluded I did indeed have Babesia. Turns out I have a stubborn case that's been hard to treat.
You could try some herbals to see if you have any Babesia herxing on them. (CryptoPlus, Enula, Artemisinin, A-Bab, Bab-3). I didn't have any reaction to three different ones early in Lyme treatment. I did after the Lyme infection was greatly reduced. My first reaction is a worsening of my shortness of breath and air hunger, dull headaches, fatigue and malaise. After starting Malarone, my spleen became enlarged, which is has been now for months.
I think that Lyme patients with Babesia often feel worse than people with just Lyme. Babesia all by itself can be disabling due to the fatigue and malaise. You might try testing for it. While mine were negative, a lot of other people do test positive.
What were your reactions if you dont mind sharing? I started a herbal tincture cant think of the name right now starts with a C. I am just frustrated at times. I am having alot of muscle pain twitching and neuropathy in legs and hand. I do get a sore throat at times too for now reason like I am getting the flu and it passes.. Since starting the babesia tincture I get weird spaced out feeling and dizzy.I am starting slow only two drops twice a day. I take so mnay things I have to write down what I have and havent taken. I doubles my teasel and samento once and what a mistake that was. I had an awful night.
Be sure your doc is on board with all the stuff you are taking.
Consider magnesium (Mg) supplements for the muscle aches and twitching ... Lyme uses up Mg in the body and it can get low without realizing it, except for the symptoms like you are having.
Any variety ending in "-ate": Mg malate, orotate, aspartate, citrate, and others. I still take Mg everyday in a form that has Mg citrate, aspartate and orotate all in one.
Consider magnesium (Mg) supplements for the muscle aches and twitching ... Lyme uses up Mg in the body and it can get low without realizing it, except for the symptoms like you are having.
Any variety ending in "-ate": Mg malate, orotate, aspartate, citrate, and others. I still take Mg everyday in a form that has Mg citrate, aspartate and orotate all in one.
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