How painful is it compared to accupuncture or drawing blood?

I bit confusing hunh, since last post opposite my experience.

First, ask yourself, "if the test is positive what will they do differently?".

I found it was for diagnosing.

I had the EMG right after I awoke with sudden onset, severe paresthesias four years ago. It confirmed for MD's that my symptoms, which are not visible, actually were valid.

So the answer depends on your situation I guess. it is also true that treatment didn't change as a result (amitryptilene or neurontin are stil suggested for me by everyone, but I don't take them) but it did help me get my family doctor to write a Lyme referral for me, as he continues to do. So it helped me financially.

But in the past year i've had two and have found nerve damage plus they werent painful.

I had one two weeks ago and it honestly wasn't bad.

The EMG was incredibly painful for me. I'd put it at 8 or 9 on the pain scale. I would hazard a guess that if you have muscle pain, the EMG is worse. Because the needle is going into the muscle that is in pain.

I had a couple of thoughts when you wrote back. I was the one who said no - too painful. Though I think it really does depend on one's situation.

My neurologist even admitted that it may not say anything. He also said even if it didn't say anything, that didn't mean that there wasn't nerve damage. I wished I had listened more carefully, but I was so desparate to find some kind of answer (lyme hadn't been re-diagnosed yet).

Experimenal protocol is that for Neuropathy? If so, there is a cool option called Peripheral Nerve Surgery. If so, I met with the surgeons....they had developed it for diabetic neuropathy patients and it really works. I had the first phase done.

Words that were red flags FOR ME were:
Experimental drug + expensive + no data on lyme patients.

I've become much more cautious about drug companies (and of course insurance cos.) because they are the ones thriving.

One thing I know is that I was not drug-deficient from any of the drugs that were given to me. But, these have been the only therapies suggested in the past 19 years. I have had way too many medications with way too many side-effects For examples, steroids. Lots of steroids for me. Now I have learned how detrimental they are to lyme patients.

The drs. give the meds because that is what they know. Not fix the problem but make the sypmtoms go away. It's what they learn in med school.

Also they may be the drs. involved in the clinical trials.. And the drug companies are loving this. It's a relationship that works for them.

Hope this doesn't come across sounding like some paranoid pharmaceutical/dr. bashing lyme patient. I have been doing my research and it just so happend that your topic hit a nerve for me (provoked some thoughts).

For 19 years I wandered around in the system like a zombie. I didn't know any differently. The current traditional medical system doesn't work for lyme patients. And I have been chipping away at my old reality to learn from the experience.

I know there is propaganda and that is our worst enemy right now. There is no such thing as chronic lyme; we don't need more than 4 weeks antibotics, etc.

I will do just about anything to heal. Except listen to a dr. who isn't educated with lyme and take any more meds that haven't been recommended by my llmd.

Way more info than you probably needed but I was on a roll, which doesnt happen often.

I found them hideously painful. I mean, the neurologist is sticking wires in your body and jolting you with electricity!

I thought I had heard it all. Why are you even letting these uninformed ignoramuses do this type of thing to you. Don't you ask questions first?? You have a painful inflammation in your body.

If I learned one thing from having had Lyme Disease and all the associated problems, the white coat neither makes me bow nor accept all as gospel. I ask 100 questions and if I don't get what I think is a sensible answer, we have a glorious thing called the internet.

quote:

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Originally posted by GiGi:
" I thought I had heard it all. Why are you even letting these uninformed ignoramuses do this type of thing to you. Don't you ask questions first?? You have a painful inflammation in your body.

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Wow - what a response... Well, the original poster is INDEED asking for advice and not just doing it because they are told. There also seems to be two implicit assumptions in the response above: (1) anyone who did the test is blindly following medical advice, and (2) all docs are "uninformed ignoramuses."

Do we know if it was an LLMD who ordered the test? Do we know WHY the test was ordered? I've had it done and frankly, I didn't find it too bad at all. The nerve conduction part was the most uncomfortable for me although the neurologist said it was usually the actual EMG part that bothered the most people - neither, however, were horrible FOR ME. If I had to have it again, it wouldn't be a big deal to me. It is quite individual. I had it because, in addition to Lyme, there was concern that I had myasthenia gravis, thus this was an important test for me. Nothing uninformed about it.

I also just got out of the hospital for heart stuff and pancreatitis. Had some painful tests, had some not too painful tests, had some marginal docs and had some excellent docs. I think it is neither healthy nor fair to lump all medical providers (except LLMDs) into the "junk" category or the users of such services as folks who don't question things. There is ALWAYS a continuum of competence in all professions as well as a continuum of experiences with said professions (and tests). Multiply those together and...

Anyway, the apparent sweeping generalizations about the tests, docs, and people who submit to them really got my goat. Not every symptom/illness we have is necessarily Lyme and not every non-LLMD doc sucks (and not every LLMD is great). Yeah, we've had horrible experiences, but I'm keeping the baby if not some of the bathwater.

To the original poster, whether you have the test or not has less to do with the pain (it is TREMENDOUSLY variable from person to person as you've probably noted from the posts - worst pain ever to not too bad) than it does with why the test is suggested (as echoed by a few posts already here). For me it was to rule out a disease of which I had many compelling features. If its just to confirm that you have neuropathy or for the sake of completeness, its up to you. If its because there is a legitimate alternative (or additional) diagnosis on the table, it may be worth it. If whatever you have is that serious, the 20 minutes it hurts (even if its 9/10 or something) may be a good tradeoff. Collecting data as you are doing is great and then weighing it against the potential outcome of the test is all anyone can do.

Hey, good luck with this and if you get the EMG, hope its not too painful and yields the info you are looking for.

Aniek, the MD is not LL, and thus not adept in the IVIg protocol for Lyme. However, the MD is well versed in using it for Peripheral Neuropathy.

to explain: No less than four neurologists, plus the Dean of Infectious Disease at the University of Washington misdiagnosed my husband with Parkinsons, even though he handed them a positive Igenex Lyme test. Parkinsons and nothing but, was their comment. Refusing treatment finally put my husband into a wheelchair and walker, unable to move at all at times. As a consequence he fell often and finally fractured his back putting him into a metal cage for four months. He lost all muscle and dropped from a 160 to 110 pounds.

He is now well, walking, driving, happy, doing all, having been treated by a doctor without tunnel vision.

To me at least - these five so-called doctors at least - remain the ignoramuses of the century.

My own experience was not much better. But thankfully I am also well now.

I am truly sorry - I didn't mean to insult your doctor(s).

As for the results, mine were negative. Doctor says it's good...no nerve damage....ruled out a few things...looks like pain and tremors are still Lyme.....I'm relieved to know nothing else is going on....

Good Luck if you have the test!