All Twitchers Consider Lyme

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All Twitchers Consider Lyme

Postby Twitchlots on December 30th, 2003, 10:02 am

Hi Everyone...I've been away from this site for a while. I have joined LymeNet.org. Here's why...

In my quest to find out what is causing my twitching, I stumbled across the LymeNet site and found a whole world of people that twitch. There are other symptoms but they can be as varied as there are people. I was appalled when I read the symptoms for neuro Lyme. It is almost like I could have written it! If you twitch, come on over and check us out. Your mystery may be solved too.

I'm still seeking a Lyme doctor so I haven't started the antibiotics yet but hope to in the near future. Looking forward to an end to the twitching, tingling and other stuff that drives us all nuts!

Happy New Year!
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Postby uber on December 30th, 2003, 3:07 pm

lyme is 1 of many many diseases that has twitches as a symptom and its 1 of those conditions which is thrown around way too much on the internet. Lyme disease is a rare viral disease and its very unlikely that you have this. Im pretty sure if you do find a lyme doctor and have the testing for lyme disease done they will come back negative.
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Postby Twitchlots on December 31st, 2003, 9:17 am

Uber...I have had the WB test and I am waiting on the results. All of the Lyme tests have a high rate of false negatives. A true Lyme doctor will make a clinical diagnosis for Lyme and not depend on any of these tests. I really don't know why they do them. Lyme is not a virus, it is a bacteria from a deer tick...that is why antibiotics are effective. Antibiotics are not effective on viruses.

I have 14 of the 15 symptoms listed for neuro Lyme--twitching, tingling, buzzing, vibrating, tremors among them--and every test result I have had to rule out other diseases has come back ok, MS included. Coincidence? I think not. I will be seeing a Lyme doctor in January in DC.
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Postby uber on December 31st, 2003, 9:56 am

Sorry again I have to disagree, id still say its very very unlikely you have Lyme disease based on the fact alone that its a rare condition, this is exactly what I say to all the people that come here worrying about ALS. I also have ,any of the symptoms of Lyme and have also been told numerous times from people off the net that I may have Lyme, I mentioned it to my neuro once and you could see he was finding it hard not to laugh. I know Lyme disease is 1 of the many many disease you hear that neuro's overlook but I think there is a very good reason for this.

If you listed of your symptoms I could probably list off 10-20 neurological conditions that could cause them and thats without doing any in-depth research. You say twitching, tingling,buzzing,tremor are lyme?? how about parkinsons, fibro, MS, BFS, Anxiety, CFS, Epilepsy, Bipolar, CJD, Huntingtons, HIV, Lupus, Chorea, countless Spinal Disorders, Pinched Nerves, Countless movement disorders, MG, PN etc etc the list just goes on and on, and if you look into each of the symptoms listed above and many many more you will find many many people suffering from the same symptoms you describe, I know this cause I suffer from the same symptoms myself.
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Postby dwl on December 31st, 2003, 10:12 am

I agree with Uber. The symptoms of Lyme are so vague and general that I guess many people who do not have Lyme disease could have several of the symptoms at any one given time.
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Postby Ray on December 31st, 2003, 9:37 pm

Twitchlots, do what ever you need to do to find an answer to your situation, I understand exactly what the others are saying but ultimately it's your body, your health and your concern! Even if you don't get the diagnoses that you are looking for at least you can say you tried.
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Postby Dale on January 1st, 2004, 9:23 am

Yes, you can say that you tried AND that you wasted precious time which could have been better spent enjoying the gift of life!

Another perfect example of why this should be left to trained health care professionals.

I think this would be a good New Years resolution for some of us.
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Postby Ray on January 1st, 2004, 4:23 pm

Twitchlots, I hope that you don’t heed the notion that trying to find an answer to your twitching is a “precious waste of time” in fact you’re demonstrating a true concern for your health and I can only commend you for that. Also, don’t kid yourself in believing that all health care professionals are well versed in their professions, to the contrary, I’ve heard too many horror stories to convince me otherwise!

If I had simply resigned myself to the fact that I just have to accept my twitching and all the side effects that go with it then right now I would be in constant pain in the lower legs and hands (see my past posts). In an effort to find possible solutions, if not to find a cure for my 24/7 calves and feet twitching but something that could minimize the pain I stumbled across medication that has truly been beneficial for reducing the pain. I can honestly say that 95% of the pain is gone, is it temporary, maybe, time will only tell.

Everyone’s situation is different and for anyone to belittle your efforts is absolutely wrong! I could only dream of a day where I could say that a large percentage of my twitching is gone but as long as they number in the thousands per day, I too will look for answers!

Good luck in your endeavours

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Postby garym on January 1st, 2004, 11:43 pm

Twitchlots,

While I agree that lyme is a long shot, I think it prudent to get checked for it. People get it all the time. I also disagree with the concept that looking for a cause/cure is a waste of "precious time". Do what it is right for you.

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Postby Dale on January 3rd, 2004, 9:44 am

Wow, it has been mentioned in this post that someone's twitches number in the thousands per day.

I can't imagine spending my day counting the number of times that I twitch or have aches and pains. That sounds like more of an obsessive problem to me.

Perhaps I was wrong thinking that searching for a cause/cure is a waste of precious time. If I remember correctly there was a very interesting movie on a similar quest... "Monty Pythons Search for the Holy Grail" ... a fascinating documentary.

Some people just can't be convinced I guess. If you are a newbie to this site, my advice remains unchanged: have your condition checked by your Doctor. He/she may refer you to a Specialist. Assuming that your condition is "benign", take my advice & Karen's experience: acknowledge, accept and move on.


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Postby garym on January 5th, 2004, 2:56 pm

When there are so many possibles causes for symptoms like we experience with BFS, I think it is reasonable to search for a cause. What if it were lyme (or something else) and could be cured? I do agree that endless search and fixation can be detrimental.

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Postby John_JR on January 6th, 2004, 1:54 am

Twitchlots,

Thanks for your original post. Please be sure to post again and give us a status report. I'd like to continue the collaborative environment here. Lyme is a definite possibility, but sooo hard to diagnose - hence the controversy. In fact, there are a whole range of bacteria, mycoplasma, and rickettsia-like infections. In MY case, there is one absolute I DO know: "I gave ?something? to my wife, which means someone could have given it to me. Now we both twitch!" And like the rest of you who are way past the ALS/MS scare, I am now focusing all my research on a pathogen of some type that is the cause, and I don't consider it a waste of time. Lyme – maybe? Let us know what you find out.

Like early AIDS, until more of us "come down" with this illness, it will remain a medical mystery.
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Postby uber on January 6th, 2004, 2:12 am

Hi John..interesting post

I agree with you on Lyme, it is very difficult to diagnose, however HIV isn't difficult at all to diagnose, a simple blood test gives almost a 100% answer of "yes" or "no" and to my knowledge fascicilations are not an early indicator of HIV. I do believe PN is a indicator of HIV which could have twitches as a complication, but from what I can understand PN, is only inolved with HIV when its in its more advanced stages and has caused substantial damage to the immune system.
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Postby John_JR on January 6th, 2004, 3:45 am

Uber, before you get way off topic here, let me clarify my AIDS comment:

I do not liken twitching directly with AIDS in regards to causes or symptoms. I liken this "twitching disease" to that of the actual discovery process of new diseases in general. For example, when AIDS 1st started spreading there was no test. No one really knew what was causing it, so AIDS was a "medical mystery" for a while. Finally enough people got infected for someone to seriously consider a pathogen.

For the longest time, I thought I was the only one who had this unexplained twitching. Then the Internet was invented. Then I found this board. It's no coincidence why so many of us have the same symptoms and we happen to be ones with Internet access. Wonder how many more "benign twichers" there are?

Interesting indeed. I strongly believe for the majority of us here - who have already tested negative for major neuron diseases (like ALS/MS) - are suffering from an Peripheral Nervous System infection caused by some type of pathogen. Weather it be Lyme, you and I agree there is plenty of debate to go around for that. It's sad that the Lyme community is "contaminated" with all sorts of people who could have a variety ailments. That's why the "symptom list" seems to "fit" everybody. I'm a fact person. Sticking to the facts, like the transmission between my spouse and me is irrefutable evidence we are dealing with something "transmittable" here. My goal is to find out what "it" is (virus, prion, rickettsia, bacteria, ???).
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Postby Dale on January 6th, 2004, 11:46 am

John - what's up with the "twitching disease" comment?? Where did you ever read/hear that BFS is a disease? A disease is something that causes medically SIGNIFICANT symptoms. I don't believe twitching and muscle aches fall into that category.

Have you been to see a Neuro? From what you have written in your post, it seems like you have not (for the longest time you thought that you were the only person who had unexplained twitching?!). If you had seen one & you were in fact diagnosed with BFS, I'm sure your Neuro would have told you that he/she has seen many, many individuals with benign twitching. I believe many of us on this BB have received similar reassurances from our Neuros.

I can appreciate that you are a fact person. I'm not sure I understood your comment about giving something to your wife and now she twitches. Are you trying to say that because you and your wife now both twitch that it is "irrefutable evidence that we are dealing with something transmittable"? My wife does not twitch. Maybe I missed your point. I fail to see how your isolated case automatically constitutes "irrefutable evidence" that twitching is transmittable.

I'm curious to find out how you plan to find out what "it" is? Do you mind sharing your plan with us? I don't mean to be nosey but do you have a degree in medical science? If so, where did you receive your training? Do you have access to a lab? How many individuals are participating in this study? It sounds like a lot of work to find out what "it" is. How many hours a day will you be working on this? How many colleagues do you have working on this project?

One last question... what is "rickettsia"? My Mom's side of the family is Italian & that sure sounds like a new pasta to me.

Good luck.

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