posted
For more than two years I've had symptoms that have yet to be diagnosed. I suffer from constant lightheadedness every day, random muscle twitches on a daily basis, muscle fatigue, and hives. I've been to many specialists, but they seem to be stumped. The lightheadedness is by far my most debilitating symptom. I recently ask my GP to test for Lyme Disease. The results came back positive for Lyme Disease Antibody, but he's not sure that this result proves anything. He admits that he's not an expert on the disease and is not sure how to accurately interpret the results. I appreciate his honesty and respect the fact that he's not dismissing it. So, I'm now in search of a LLMD in the Syracuse, NY area that can possibly diagnose me.
Any help would be much appreciated.
Posts: 1 | From Syracuse, NY | Registered: Sep 2009
| IP: Logged |
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, lymejc, welcome to our lyme site.
I am sending you a private message. Click on the flashing envelope.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
| IP: Logged |
bettyg
Unregistered
posted
welcome jc
check your profile above for my pm to you of NY llmds
please break up your long paragraph into many, SHORT paragraphs and double space between each one for us severely neuro lyme folks like me who can't comprehend or read what you typed.
please use my guidelines below; big thanks 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. ----------------------------------------------------
I found Turn the Corner Foundation through the website for the Under Our Skin movie. Here is the link for their website. At the bottom of their webpage there is a link to click if you are interested in getting help finding and LLMD.
I emailed them for help and got a response with the names of over 10 LLMDS in two states in less than a days time. What an incredible blessing! Thought I'd pass it on. By member Aimee, 7.11.09 ------------------------------------------------------
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.
UNDER OUR SKIN dvd LYME DISEASE documentary, www.lymediseasefilm.com go to this site to view trailer of UNDER OUR SKIN 5 min. Clip! Premiering 2008!! on big screen 09 in 10 LARGE CITIES ONLY!
* 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!!
OVERSEAS INSTRUCTIONS FOR SENDING TO IGENEX/FRY LABORATORY! 2-23-08
posted
I'm from Binghamton, NY my wife has diagnosed Lyme, we ended up going south about 2.5 hours to Dr. C. Couldn't find any LLMD's in the area.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
PM sent to BC.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
PLEASE DO NOT ADD ON ANY NEW DOCTOR REQUESTS ON THIS POST.
EVERYONE MOST PLACE THEIR OWN SEPARATE POST. ONCE A POST HAS BEEN ANSWERED, WE RARELY COME BACK TO CHECK.
YOUR REQUEST WILL LIKELY BE MISSED AND WILL NOT BE ANSWERED. PLEASE READ THE GUIDELINES PINNED TO THE TOP OF THIS SECTION REGARDING POSTING.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
posted
Geez ABX, back off. You'll scare ppl away. This guy is from my neck of the woods. BC...will PM you.
Posts: 847 | From upstateNY | Registered: Dec 2007
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
keltyl I replied to BC and gave him all the information he needed, as noted I didn't turn him away.
I'm not trying to scare people away but to help them.
If they tag on to another post chances are their post will be missed and go unanswered.
I'm essentially closing off the post to new doctor's requests. Lymenet rules requires that each person post a separate post.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
posted
abxnomore... I'm from an area close to the OP, was simply responding with the fact that I found no LLMD's in that area, and thus went downstate to Dr. C.
Posts: 27 | From Binghamton, NY | Registered: Jun 2009
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
After contacting you BC in an effort to help, I now understand that what you were trying to communicate is that you found no LLMD's that take insurance in that area.
I contacted you to offer you help, as I could not understand why you were traveling so far to see Dr. C, when there are two good ones closer to you.
I was trying to offer help you, as I know you understand and believe we had a fruitful, constructive conversation.
Not sure what all this fuss is about on the part of keltyl who felt the need to PM me several times and instruct me, but this post is CLOSED TO ANY NEW DOCTOR REQUESTS.
Each individual must start a separate post. Thanking all new posters in advance for your cooperation, so that we can be assured of helping you better.
[ 09-17-2009, 03:22 PM: Message edited by: Abxnomore ]
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[hi]](graemlins/hi.gif)
welcome to our lyme site.![[Smile]](smile.gif)
Printer-friendly view of this topic