I recently found this site after someone told me that my symptoms could be related to lyme disease. I did a little internet investigating, and here I am.
I've been having random shooting nerve pain for almost 2 years now. It came on after a I had some pretty strong flu-like symptoms one weekend...aches, chills, fever, etc. The shooting nerve pains has gotten much worse over the last 6-8 months. The pain is not constantly there, but comes randomly, anywhere on my body and last just a few seconds. But, when it comes, it is sometimes very intense and sends a wave through my entire body. Overall, I have some days where I experience over 30 zaps in a day, maybe more. They almost feel electrical in nature. Also, when I'm active and/or busy, they are much less frequent. A couple more things...i get them while sleeping (but more so upon first waking up) and they are much more frequent after lunch. My job involves sitting at the desk for extended periods, which is the time when I seem to notice them more.
I have talked with doctor about it who eventually referred me to a neurologist. The neuro really didn't know what it was. They decided to do a brain MRI and other tests, which all came back normal.
Overall, i'm a healthy guy, 30 years old, 6'3, 210 lbs. I played collegiate basketball and played professionally in Europe. I continue exercising to this day. My body feels okay, otherwise. I don't have any muscle weakness or anything like that. I do have aches frequently in my lower back and I also get headaches quite frequently.
Other medical issues: I have had twitching in eyelids and other places in body. My only other condition that may have a relation is that I suffer from acid-reflux. I do take prilosec semi-regularly which helps.
I look forward to hearing from people.
Thanks CMT
Posts: 4 | From Massachusetts | Registered: Jun 2009
| IP: Logged |
bettyg
Unregistered
posted
welcome cmt
sorry, but i have severe neuro lyme, and can't read long paragraphs like yours above. would you break it up please using my guidelines below, and then many others plus me will be able to read and comprehend.
from there we will be able to help you ok! big thanks!
be sure to read the SYMPTOMS LISTS for lyme and co-infections meaning other diseases those darn ticks carry! top of medical ok hugs
Welcome; I'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
please get a western blot igm and igg blood test drawn LOCALLY on a mon. or tues. and sent to the below ok! all details are there.
IGENEX , CALIF. BLOOD TESTINGS ...check current $$!
* Please note: What you are about to read below is NOT meant to scare any of you from any lyme testings done; it's meant to be informed PRIOR to going into having various tests done and then be told what the costs will be! * Mine was sticker $$ shock on various testings done by my 2nd LLMD/new to me in 4=06. Those tests/results are found elsewhere in my links/advise.
* Igenex's charges for these below things cost $905, which I figured up the last 2 days for 2 other folks includes
* The below tests were done for ME; you MAY NOT NEED them all ok! :
* western blot IGM & IGG, this is MANDATORY for you which costs $200 total for 2 tests done; 6.09 same prices still. * * ******************************************************* * OPTIONAL ONES ARE:
* co-infection panel for YOUR AREA OF COUNTRY; * PCR WHOLE BLOOD...this is what my LLMD ordered!
It's PREPAY! unless you are on medicare; IGX will file the paperwork & it's FREE to you.
go to www.igenex.com and read over their info. Prices go up twice a year: MAY and NOVEMBER!!
* * have blood drawn MON. or TUES. only; you don't want your blood sitting in post office over the weekend; will ruin the results!
* Also, call 1-800.832.3200 for CURRENT PRICES! * They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in! OUT OF USA will take longer to receive!
* You need to DOWNLOAD IGENEX's required form.****************************************************** * * MD, DO ,ND, AC, DC are all fine** must sign, date, and show DIAGNOSIS CODE on there why he's ordering the test.
Make sure you show to FAX results and SNAIL MAIL PAPER COPY! My results were lost for 4-5 weeks! Bettyg * * When you get your results, please post them in MEDICAL; * Post ONLY the POSITIVE & IND ones .... not the negative ones!
GET COPIES OF ALL YOUR SPECIAL BLOOD TESTS: western blot igm/igg and/or co-infection tests always!!
* Also, look for post by LYMETOO/TUTU on DR. C's (Missouri) explanation of the western blot IGM & IGG numbers, below!
Starfall1969
Frequent Contributor (1K+ posts)
Member # 17353
posted
Breaking this up *******************************
Hi all.
I recently found this site after someone told me that my symptoms could be related to lyme disease.
I did a little internet investigating, and here I am.
I've been having random shooting nerve pain for almost 2 years now.
It came on after a I had some pretty strong flu-like symptoms one weekend...aches, chills, fever, etc.
The shooting nerve pains has gotten much worse over the last 6-8 months.
The pain is not constantly there, but comes randomly, anywhere on my body and last just a few seconds.
But, when it comes, it is sometimes very intense and sends a wave through my entire body.
Overall, I have some days where I experience over 30 zaps in a day, maybe more.
They almost feel electrical in nature.
Also, when I'm active and/or busy, they are much less frequent.
A couple more things...i get them while sleeping (but more so upon first waking up) and they are much more frequent after lunch.
My job involves sitting at the desk for extended periods, which is the time when I seem to notice them more.
I have talked with doctor about it who eventually referred me to a neurologist.
The neuro really didn't know what it was. They decided to do a brain MRI and other tests, which all came back normal.
Overall, i'm a healthy guy, 30 years old, 6'3, 210 lbs.
I played collegiate basketball and played professionally in Europe.
I continue exercising to this day.
My body feels okay, otherwise.
I don't have any muscle weakness or anything like that.
I do have aches frequently in my lower back and I also get headaches quite frequently.
Other medical issues: I have had twitching in eyelids and other places in body.
My only other condition that may have a relation is that I suffer from acid-reflux. I do take prilosec semi-regularly which helps.
I look forward to hearing from people.
Thanks CMT *****************************
It could certainly be Lyme-related, although my LLMD seems to think the stabbing pains like that (I get them too) could be more related to babesia (a coinfection).
You may want to go over to Seeking a Doctor and post there, indicating the largest city near you.
Hopefully others will be along shortly with mor info.
Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008
| IP: Logged |
tickbattler
Unregistered
posted
Hi CMT,
It sounds very much like it could be lyme. All of your symptoms are very common lyme symptoms and the fact that you had a flu before this all started is very suspicious.
I would recommend getting an appointment with a lyme-literate doctor (LLMD) to get the proper testing and evaluation. Be careful not to waste your time with other doctors, as they can steer you in the wrong direction and waste valuable time.
There is a huge controversy going on now about the proper treatment for Lyme Disease and whether chronic Lyme even exists. Most mainstream docs follow the IDSA guidelines which do not recognize chronic Lyme!
If you have a wait to get into see a LLMD, in the meantime you could get an Igenex Western Blot lyme test done to see if any lyme-specific bands show up. You can intrepret it yourself with help from this site or other places.
I did this with my husband and children so that we could hit the ground running when we met with the LLMD. You just need a friendly doctor who will sign the requisition form and send you the results when they come in. (We used my children's pediatrician.)
I had my blood drawn at the local hospital and then sent the blood to Igenex myself. (I also had us all tested in this way for coinfections through Fry Laboratories.)
You are doing the right thing by researching on this site. You can get so much good information here.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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