Aa
lyme, or no?
ok, so for me it all started in one day. 2-3 weeks after the flu and mono, i woke up, had a hard time turning my head to the right, little spasms in my neck that would pull my neck to the left. what i thought was weakness in my arms and legs, but now im not sure, its so hard to explain..when i lift my arms and legs they shake, but i can still all the things i need to. its like the muscles cant relax or something. twitches EVERYWHERE. i have been so worried about ALS. but from what i have read, it doesnt start this way.
i have seen a neuro, who said cervical dystonia with tremors, but im so not buying it. that doesnt start this way either, at all. and all literature says that if you present with other neuro symptoms that the cervcal dysonia is almost alwys secondary.
i also have these wierd feelings of burning under my skin, so stranfe. my joints sometimes feel so irritated, like a cold but warm burning, and if i stretch my legs out, then straighten them, its so painfull..
the tests i have had that camr back out of range where as follow :
low b12
low ferritin
low vitamin d
hypothyroid
low creatinine
i have been treated for over 7 months for all things listed above, without ANY improvement, at all.. im so frustrated. im only 30, i have 3 small kids (who are my whole world)..i really need to get back to who i was before all of this. any help is so very appreciated. i guess my main question is, does this sound like lyme disease?? has anyone had these type of symptoms that started so fast?
i have seen a neuro, who said cervical dystonia with tremors, but im so not buying it. that doesnt start this way either, at all. and all literature says that if you present with other neuro symptoms that the cervcal dysonia is almost alwys secondary.
i also have these wierd feelings of burning under my skin, so stranfe. my joints sometimes feel so irritated, like a cold but warm burning, and if i stretch my legs out, then straighten them, its so painfull..
the tests i have had that camr back out of range where as follow :
low b12
low ferritin
low vitamin d
hypothyroid
low creatinine
i have been treated for over 7 months for all things listed above, without ANY improvement, at all.. im so frustrated. im only 30, i have 3 small kids (who are my whole world)..i really need to get back to who i was before all of this. any help is so very appreciated. i guess my main question is, does this sound like lyme disease?? has anyone had these type of symptoms that started so fast?
Best Answer
hey :) so i wanted to add my new symptoms- its like a cold burning feeling in my right knee, annoying. also, then, its like really cold water running down my leg..soooo strange.
Yes, I agree that it is up to the patient to be informed. My concern is that when flat statements are made, such as: "Your immune system is so overwhelmed that it will not produce a noticeable response." Will not? Absolutely? Really? I would soften that to say 'may not'. But it's not because the immune system is overwhelmed; it is, acc. to what I read, because the immune system stops producing antibodies after a period of time, being designed as it is to deal with bacteria with short half-lives, and Lyme are not in that category.
It's the absolute nature of the verbs that concerns me, telling people what tests to get, not just suggesting them: "Also get checked for HHV6 which is a coinfection or a latent virus that is now "un-suppressed". Maybe we should leave that up to the doc to decide.
And to predict what an MD whose name is not even known to us will do is imo a bridge too far: "I suspect he will only order the Labcorp tests since he doesn't know any better." Doesn't know any better? You 'suspect'? Neither of us knows who this guy is or what he knows, and if my doc were being trashed that way, it would certainly induce fear in me, even if I knew that the person doing the trashing didn't know who my doc was. Anxiety and fear are part of Lyme, as you know, and anything unnecessarily making it worse seems ... unnecessary and even cruel. That's what I worry about: the effect of these over-the-top statements on the ill and frightened people who come here.
You are of course entitled to your point of view. I just ask that you consider the effect your words have on fragile people who come here. You can suggest anything you like, but *suggesting* is not the same as flatly stating, for example, that a doc whose name you don't know and have never met "doesn't know any better." The people who need to get smacked around are the IDSA, not the poor lost and ailing souls who fetch up here looking for help.
You also say: "I was told by 2 EXPERTS what tests should be run and how they are interpreted. Some by Labcorp, others by IGENEX. The labs that I got are THE most up to date labs being used." Well, that's certainly your opinion, and I don't disagree with it, but it's not up to us here to tell people what's right and wrong. Our docs, yours and mine, may be wrong. There is no franchise on the absolute truth and cure for Lyme, or none of us would be here because everyone would be cured already. Your expert is another guy's idiot, and vice versa. Absolutism is what the IDSA traffics in; we should strive to be humble enough not to follow them down that path to perdition.
We are here to help people find their way to a doc who can diagnose and treat them and to understand the mess that the medical community has created with regard to Lyme -- not to tell visitors here what tests to get and what diseases they have.
And, as if it matters, my LLMD is an even better known authority than Jemsek.
It's the absolute nature of the verbs that concerns me, telling people what tests to get, not just suggesting them: "Also get checked for HHV6 which is a coinfection or a latent virus that is now "un-suppressed". Maybe we should leave that up to the doc to decide.
And to predict what an MD whose name is not even known to us will do is imo a bridge too far: "I suspect he will only order the Labcorp tests since he doesn't know any better." Doesn't know any better? You 'suspect'? Neither of us knows who this guy is or what he knows, and if my doc were being trashed that way, it would certainly induce fear in me, even if I knew that the person doing the trashing didn't know who my doc was. Anxiety and fear are part of Lyme, as you know, and anything unnecessarily making it worse seems ... unnecessary and even cruel. That's what I worry about: the effect of these over-the-top statements on the ill and frightened people who come here.
You are of course entitled to your point of view. I just ask that you consider the effect your words have on fragile people who come here. You can suggest anything you like, but *suggesting* is not the same as flatly stating, for example, that a doc whose name you don't know and have never met "doesn't know any better." The people who need to get smacked around are the IDSA, not the poor lost and ailing souls who fetch up here looking for help.
You also say: "I was told by 2 EXPERTS what tests should be run and how they are interpreted. Some by Labcorp, others by IGENEX. The labs that I got are THE most up to date labs being used." Well, that's certainly your opinion, and I don't disagree with it, but it's not up to us here to tell people what's right and wrong. Our docs, yours and mine, may be wrong. There is no franchise on the absolute truth and cure for Lyme, or none of us would be here because everyone would be cured already. Your expert is another guy's idiot, and vice versa. Absolutism is what the IDSA traffics in; we should strive to be humble enough not to follow them down that path to perdition.
We are here to help people find their way to a doc who can diagnose and treat them and to understand the mess that the medical community has created with regard to Lyme -- not to tell visitors here what tests to get and what diseases they have.
And, as if it matters, my LLMD is an even better known authority than Jemsek.
the reasons I mention testing for myco and HHV6 and cytomegalo virus is because SO LITTLE is known by standard doctors. But prof Dr Garth Nicolson says in his experiences people with chronic illnesses have these infections/latent viruses (now active) and they are overlooked (sometimes even by somewhat experienced LLMD's.) Yes, we are NOT doctors, but we can make suggestions from experience.
Jackie, so you are saying that the tests that Jemsek ran on me are not suggestable? And he is an expert ID and Lymes doc. You are not. I am not either. But I was told by 2 EXPERTS what tests should be run and how they are interpreted. Some by Labcorp, others by IGENEX. The labs that I got are THE most up to date labs being used.
BUT, it is up to the patient to be informed and be up to par with the tests being used to help determine a particular illness. I don't know who your doc was, but I'll stake their reputation and knowlege up against any LLMD, anytime, anyday.
Jackie, so you are saying that the tests that Jemsek ran on me are not suggestable? And he is an expert ID and Lymes doc. You are not. I am not either. But I was told by 2 EXPERTS what tests should be run and how they are interpreted. Some by Labcorp, others by IGENEX. The labs that I got are THE most up to date labs being used.
BUT, it is up to the patient to be informed and be up to par with the tests being used to help determine a particular illness. I don't know who your doc was, but I'll stake their reputation and knowlege up against any LLMD, anytime, anyday.
thanks guys, of course, i do not rely on anyone here to treat or diagnose me..but, hearing ppls stories, and suggestions are always helpful.
It can't hurt to ask your endo to test for Lyme, but because Lyme is a developing area of medicine, MDs who do not specialize in Lyme often don't know which tests are most accurate, and will order tests that are maybe helpful, but that have serious limitations.
Actually, none of the tests is very accurate, which is why seeing an MD who specializes in Lyme is important, because the patient's history and symptoms are very important factors that many docs, accustomed to relying only on the paper test results, will not take fully into account.
If your endocrinologist tests you, get copies of the test results and think about taking them to a Lyme specialist. When I was ill with Lyme and a co-infection, I had been through about 20 docs, and it was my second or third endocrinologist who finally ran a Lyme test, which came back mildly positive. This doc, who was very nice and thoughtful but totally clueless, said that I could not possibly have Lyme because I wasn't sick enough. Riiiiight.
Actually, the longer you have had Lyme, the less active your immune system may be against it, and so the less likely the tests are to be positive. Lyme specialists know this, but regular docs don't tend to understand.
So can you ask your endo to test you for Lyme? Yes, of course, but s/he may not know how to read it. Get the test, get a copy, see what then endo says, and then decide whether to find a Lyme specialist to review your history and the test you got.
No one on a website can diagnose you or tell you which tests you have to get. A doc wouldn't do that online, and any medical-type advice posted here should be viewed with caution. No one here is medically trained, so all we have are our experiences and what we have read. Flat statements about what tests you must have done and what your doc knows or doesn't know are imo over the line, so be cautious. This is ONLY a website.
Best wishes to you --
Actually, none of the tests is very accurate, which is why seeing an MD who specializes in Lyme is important, because the patient's history and symptoms are very important factors that many docs, accustomed to relying only on the paper test results, will not take fully into account.
If your endocrinologist tests you, get copies of the test results and think about taking them to a Lyme specialist. When I was ill with Lyme and a co-infection, I had been through about 20 docs, and it was my second or third endocrinologist who finally ran a Lyme test, which came back mildly positive. This doc, who was very nice and thoughtful but totally clueless, said that I could not possibly have Lyme because I wasn't sick enough. Riiiiight.
Actually, the longer you have had Lyme, the less active your immune system may be against it, and so the less likely the tests are to be positive. Lyme specialists know this, but regular docs don't tend to understand.
So can you ask your endo to test you for Lyme? Yes, of course, but s/he may not know how to read it. Get the test, get a copy, see what then endo says, and then decide whether to find a Lyme specialist to review your history and the test you got.
No one on a website can diagnose you or tell you which tests you have to get. A doc wouldn't do that online, and any medical-type advice posted here should be viewed with caution. No one here is medically trained, so all we have are our experiences and what we have read. Flat statements about what tests you must have done and what your doc knows or doesn't know are imo over the line, so be cautious. This is ONLY a website.
Best wishes to you --
He will probably use the labcorp/Quest ELISA and or Western Blot which looks for antibodies. Two things are going on here. Your immune system is so overwhelmed that it will not produce a noticeable response. Plus, from what th researchers have found, the Borrelia produces a surface coating that "absorbs' and attaches any antibodies to it like a sticky coating, hence very few free floating antibodies. You need to look for the actual DNA of the bacteria. Thats why IGENEX Labs is so profecient, it uses an IFA (Immuno florescent Assay)) test which is MUCH more effective at finding the bacteria. Also get checked for HHV6 which is a coinfection or a latent virus that is now "un-suppressed". My HHV6 was 14.7 as a IgG, so it was recent.
I suspect he will only order the Labcorp tests since he dosent know any better.
I suspect he will only order the Labcorp tests since he dosent know any better.
Have an Answer?
You are reading content posted in the Lyme Disease Community
Fearing autism, many parents aren't vaccinating their kids. Can doctors reverse this dangerous trend?
Can HIV be transmitted through this sexual activity? Dr. Jose Gonzalez-Garcia answers this commonly-asked question.
A breakthrough study discovers how to reduce risk of HIV transmission by 95 percent.
Dr. Jose Gonzalez-Garcia provides insight to the most commonly asked question about the transfer of HIV between partners.
Before your drop a dime at the pharmacy, find out if these popular cold and flu home remedies are a wonder or a waste
Fend off colds and the flu with these disease-fighting foods
