posted
Hello, all. Just joined and I'm hoping someone can direct me to a Lyme-Literate neurologist in MA. I'm 25 and have been battling chronic Lyme since 13. Didn't get Lyme dx till 21. Started with profound fatigue and back pain. Gradually more and more systems became affected.
Chief complaints: significant eye pain (especially with eye motion), shaking in eyes, clavicle pain/hypersensitivity, fatigue, dull burning in throat, neck pain/stiffness, mid-back pain, super-tight hamstrings, joint pain in hands/elbows, low muscle tone.
Any help would be much appreciated. Thanks!
Posts: 1 | From Beverly, MA | Registered: Sep 2014
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Welcome. Sorry for why you are here, of course.
There is so much involved in what you seek, so just hold on as I may not be able to fully explain.
Writing with assumption that you have not found a good LLMD. Can't tell if you've been treated at all but if you are not solid in that, you may need a DIFFERENT LLMD. - otherwise, if not yet assessed by a LLMD:
First, I would seek a LLMD. Not a neurologist. A neurologist, even if LL, would not TREAT lyme and all that goes with that.
There are only about two LL neurologists in the whole U.S. - (sorry, I don't know who they are but others will). Still, they would be more for consult, working with one's LLMD on their request.
While lyme at nearly any / all stages involves all the nervous systems (more of those than I ever thought!) . . . it's best to start with a very well experienced ILADS educated (and beyond) LLMD.
Let them sort this out and if they think you need a referral they will know where to turn.
Start with your local lyme support groups, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- shaking in eyes is likely "nystagmus" and often goes with lyme, often due to the toxicity of it. Nystagmus can be caused / influenced by many factors.
But, one "effect" with nystagmus is that the eye muscles can be tight and irritated, sensitive - then SPASM. Just as magnesium can help all kinds of tissue "tightness" and nerve fiber irritations, same with eyes.
And, nystagmus can also be a clue that the inner / middle ear are involved (as is very often the case).
Magnesium can help in many ways with that - and many other symptoms while you sort out a LLMD.
Topic: MAGNESIUM - LINKS sets -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While liver support is a vital key to supplement any treatment approach, also until you get your bearings with a good / new LLMD, some things here may help ease pain.
You've come to the right place. This is where people actually GET HELP!!
You did not mention if you are under the care of a "Lyme-literate" doctor (LLMD). I agree with poster "Keebler" - you need to be evaluated and treated by a LLMD. Non LLMDs have no clue about this horrible disease and its complex treatment!
Unfortunately, LLMDs are far and few between. You need to go where they are.
Also, most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Btw - please break up your posts into 2-3 sentence paragraphs, as there are people on lymenet who cannot read large blocks of text due to neurological problems from Lyme. Thanks.
Posts: 8981 | From Illinois | Registered: May 2006
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I agree that there are likely only 2 lyme literate neurologists in the country. Very few lyme patients need one.
I suggest you ask for a good lyme doctor in your state or other states that you are willing to travel to.
That is something that people can help you with.
Lyme disease is esssentially a disease of the nervous system, so lyme specialists are well acquainted with the neurological symptoms it can produce.
See this quote from the Burrascano Lyme Treatment Guidelines:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4)
If you already have a great lyme doctor, please let us know so we can try to help you better.
If you have not already read and STUDIED the Burrascano Guidelines, I strongly suggest that you do. This document will give you your education on lyme disease. An educated patient is essential with this disease.
Posts: 9931 | From Maryland | Registered: Dec 2007
| 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!
Printer-friendly view of this topic