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...
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 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.
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! ;)
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.....
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?
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.
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....
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.
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.
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.
I do take all medicines with Dr.s approval. Only thing added without discussion is babesia tincture. I am just overwhelemd with all of it and havent had any great relief but have had some. I do acupuncture and Ondamed which both seem to alleviate some pain. I have a friend with the very expensive ondamed machine and get an extreme discount, so I can say that 3 treatments a week do seem to help and once a week acupuncture as well as bi-weekly masage. I would like to know what has persoanlly worked for all of you if you dont mind sharing. Also was wondering what your onset of symptoms were and the symptoms you have had later wtih lyme and co-infections. I believe I have babesia as my test said I had a past infection but dont believe i am cured of it. My lyme test always comes back different, but obviously have lyme.
My problem is its hard for me to beleive in my diagnosis since if I was infected I beleive it was 6 years ago and the only symtoms I remember were very long flu like times each year sometimes twice a year. And now all of a sudden since a gastric issue in November, my body is completely out of wack and have all this neuropathy and twitching and muscle pain especially in my legs and feet, and sometimes arms.
When I finally figured out when I got bit by the tick that infected me, I realized I'd had it 6 years. I had a fever, severe malaise, went completely hoarse, and could hardly stand up when I first got infected. I didn't know what it was. I was on vacation and considering finding a doctor when my travel buddy offered me her travel meds, a week of Augmentin 875. I took it and shortly after the second dose I started to turn the corner. It was clearly working as I got better and continued the vacation. I forgot about the incident as I got well.
But for the next 4 years and 8 months I had these weird episodes of terrible fatigue, malaise, and headaches that would appear and disappear several days or a couple weeks later. I would be knocked flat for at least a couple days, and dragging horribly the rest of the episode. I thought they were relapses of an old case of Mono I'd had several years earlier. It felt just like Mono.
Then, after a couple years of chronic stress due to the economy, chronic fatigue kicked in. My doc said it was hormones due to aging. I'd had some strange ovarian cysts, too, along with wild hormone swings so the diagnosis made sense.
Six months later I got strangely short of breath. I'd just run out of air while talking. I'd whisper even when I tried to speak clearly. I had to think about my breathing most of the time. I was diagnosed with allergies and given an inhaler. Three months later, as I worsened, I was diagnosed with asthma and given steroids and some nasty asthma meds. I ended up in the ER when I couldn't get enough air. They gave me more steroids.
My downhill slide really accelerated after the steroids. Now I know that steroids make a Lyme patient a whole lot sicker. Over the next three to four months I racked up several dozen new symptoms in a variety of systems in my body. Some of them mimicked MS. Others mimicked IBS. My total symptom count exceeded 80. A dozen doctors couldn't help, including a few in a highly rated hospital. My pulmonologist said I had Chronic Fatigue and I'd feel better if I stopped doing so much research on the Internet.
I ended up diagnosing myself and convincing my GP to order IGeneX tests. I went to a well regarded LLMD in my area where I was diagnosed with Lyme and Bartonella. The Babesia diagnosis came 11 months later.
So, to address your doubt... most doctors don't recognize Lyme no matter how sick you are or what symptoms you have. Lyme is exponentially more complex than the medical profession gives it credit for. It isn't just a bulls eye rash, headache and sore knees within a month of a tick bite in New England. It is all over the country with a wide variety of presentations.
Some of us get a relapsing/remitting course that is confusing. Blood tests can vary from month to month and don't show a clear picture of what's going on. Scans may or may not show any abnormalities. I now consider myself lucky that I have brain lesions. My doctors took me very seriously after my brain MRI. Nothing else was positive, so without them, I'd have been dismissed as a kook.
Lyme just doesn't follow the "rules" that today's doctors were taught in medical school. Researchers are slow to see something that violates their paradigm. Just look at Dr. Barry Marshall and how he found h.pylori in the stomach. It had been taught as medical fact for over 50 years that no bacteria could survive in the stomach, so his peers dismissed him and laughed at him.
It took about 20 years for the medical world to adopt his discovery, along with the simple remedy of 2 weeks of some cheap, easily available antibiotics. I shudder to think how many people suffered for years from ulcers during that time. Despite Dr. Marshall being the recipient of a Nobel prize for medicine for his discovery, there are still some old school doctors out there who tell patients to take antacids for their chronic stomach pain rather than checking them out for h.pylori.
And so it is with Lyme, only it's taking a lot longer than 20 years. It's a big uphill fight for patients and the doctors who really understand us.
I encourage you to search for and read blogs and personal stories about Lyme. I did, and I found many examples that I could relate to. I encourage you to express your doubts to your LLMD and ask how you can be more sure of your diagnosis. Since no one else has any answers for you, your history is consistent with other long term Lyme patients, and antibiotics rarely cause serious harm, a betting person would go with the LLMD.
Thank you. I will call my LLMD. I just have moments were I feel like I am overwhelmed. So many Dr.s, medications, vitamins, diet, symptoms, memory loss, ETC. I got a beautiful card from my daughter that read (I would ask you to come play with me but know you are sick and always busy). Made me cry. I swear I try to be a good mother but this illness sux the life out of me some days. I just want to be a better mother..... I pray alot......
Your daughter sounds like a gem -- that comes from good mothering, so I'd say you're doing just fine: your daughter is caring enough to make you a card, and she is compassionate enough to understand you aren't feeling well.
You are right about Lyme being an overwhelming job to just manage day to day. I am still cleaning up some of life's little messes that went untended when I was so ill, now ~5 years ago, so delegate as much as you can to others, put off what can be put off, and take care of yourself -- that's what's important to your family.
Part of what makes Lyme hard to tolerate in day to day life is that we look so normal -- if I had had a broken leg, people would understand I couldn't go out and have fun ... or even get the housework done!
You might reassure your daughter that you will get better and then you will be able to play more, and that you really, really look forward to that because she is such a wonderful daughter. My daughter was 4 when my appendix ruptured after I was ignored by a string of docs who didn't think I 'looked sick enough' to have appendicitis. It took my kid a while to get over it, but she did.
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