I have been suffering from Lyme disease like symptoms for almost two years. I was initially diagnosed as having ALS by one neurologist in Rochester, NY. After getting a second opinion by a neurologist in Baltimore, MD it was determined that I don't have ALS as my symptoms have not gotten any worse after almost two years and after 4 EMG's there has been no change. I have been living with no diagnosis for almost two years and I have had a lyme test done two times and it has come back negative. I would like to discuss my symptoms with a LLMD in the Rochester, NY area to see if I could potentially have lyme disease.
Thank you.
-------------------- Ksmo Posts: 1 | From Phelps, NY | Registered: Oct 2009
| IP: Logged |
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
Hi, Ksmo and welcome to our site.
I am sending you a private message (pm). 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 ksmo
check your profile above for my pm to you of NY state llmds
please edit your post breaking it up into SHORT paragraphs and double space between each paragraph for severe neuro lyme folks like me who can't comprehend or read as is.
please use my guidelines below, and huge thanks hugs
Welcome to Lymenet! I'm so glad you found us! You've come to the right place for education and support!
The following is some links that may be helpful to you:
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, and why you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
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. www.ilads.org
They will also send you a ``test kit'' with their required form, all the test vials, & box to ship it in. Be sure 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.
Optional tests include: co-infection panel for your area of country and PCR whole blood
Igenex is pre-pay/out of network for most insurances. If you are on medicare, Igenex will file the paperwork & it's free to you.
Betty's suggested posting guidelines: Many of members have neuro lyme, and it is hard to read long solid block text and be able to comprehend.
For easier reading, please edit your post by clicking the ``paper pencil' icon to right of your user name, which opens up the subject line and body text.
You can break up your longer paragraphs into smaller paragraphs. Please hit ``enter'' key twice after each paragraph, also.
Go to left hand corner and mark box to receive `all replies', and click edit send.
Thank you for posting in a manner that makes it easier for all to read and help others.
IP: Logged |
posted
Hi- Sent you some info about a local support group via private message~ Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
| 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)
and welcome to our site.![[Smile]](smile.gif)
Printer-friendly view of this topic