I have been diagnosed with peripheral neuropathy most likely as a result of the Lyme Disease. I have recently been evaluated by Dr. J. in Maryland. He did not order an MRI or any scans on the first visit. He did start me on antibiotics. Should I seek a neurological exam from a LLD? If so, any suggestions for one in VA or NC? Thank you in advance for any assistance you may offer!
Posted by hopingandpraying (Member # 9256) on :
up
Posted by faithful777 (Member # 22872) on :
**moving to medical**
Posted by poppy (Member # 5355) on :
There are almost no LL neuros in the country to begin with. And specialists hardly ever are going to treat you or help you with lyme. IMO, the only time it is useful to see neuros and other specialists about lyme symptoms is when your lyme doctor tells you to go for some specific reason. And then you have to be very careful about who you see. All too often you will get the third degree about your diagnosis, and may even cause trouble for your lyme doc.
What do you think an MRI will tell you? I realize you are new and don't understand the crazy world of lyme, but it would be better for you to get educated first before venturing into deep waters that are shark infested.
You are very fortunate to have found a lyme doc. Just do what he/she tells you to do. And check in with any support groups in your area.
[ 03-03-2014, 07:06 PM: Message edited by: Lymetoo ]
Posted by Lymetoo (Member # 743) on :
Agree with poppy.
Posted by seibertneurolyme (Member # 6416) on :
I agree there are very few lyme literate neurologists. I don't know of any in Virginia or North Carolina.
But for a basic neuro eval just about any neurologist would do. I probably would not discuss lyme or your current treatment with your LLMD unless you are prepared to educate the doc. Just go over your medical history and symptomatology and see where that takes you.
It depends somewhat on whether you will be using oral meds or IV meds as to whether an MRI will be of any benefit. In some situations an abnormal MRI or brain SPECT scan could help get insurance approval for IV meds.
Don't expect a neurologist to provide treatment. But they can more easily order neuro tests if those are deemed necessary. I would discuss this with your LLMD.
In your situation the doc you are seeing is having a legal battle with the insurance companies currently so getting the tests ordered by a neurologist would be much simpler than getting the LLMD to order them.
Also if you end up needing IV IG for the neuropathy a neuro eval may be of benefit to get that approved as well.
It does not sound like there is any reason to rush off to a neurologist if you have only begun treatment, but that is always something you can do at any point in time if your neuro symptoms change or worsen.
Bea Seibert
Posted by Nancy L (Member # 42733) on :
kb2013,
My main symptoms of my confirmed Bb infection at this point are peripheral neuropathy and brain symptoms.
I had whole left arm burning/tingling/numbness and shoulder/neck aches too, along with extreme migrating muscle aches in those areas.
I took turmeric from Source Naturals, 2tabs 2xdaily with meals, and 2 caps Kyolic Garlic formula 100 (just the garlic, no additives)2x daily with meals., and this reduced the inflammation and muscle aches and whole arm neuropathy within about 2 weeks.
I still have some partial left hand numbness and sensitivity (peripheral neuropathy) and some neck soreness occasionally, but my major symptoms are gone.
To try to end that, and the brain fog/cognitive problems that were increasing, I am taking amygdalin foods, particularly chewing about 10-15 apple seeds a day. This has helped my brain fog alot. But not my neuropathy yet.
I understand that artimisinin clears out the brain capillaries and kills some Bb blebs, and I will be taking that in a Tribiotics formula from pure source website shortly. This plus the apple seeds to kill some brain Bb. Also lethicin and vitamin B12 daily(not B complex)which are important, I understand, for healing nerves without scarring.
Posted by poppy (Member # 5355) on :
Bea has brought up some good points. However, I still think this is not something you want to go off and do by yourself, especially since you are new to this game. Too many pitfalls for a person like you, but someone like Bea who has years of experience and is highly informed could do this on her own.
Posted by TF (Member # 14183) on :
Bea, the doctor the poster is seeing is in Maryland, and not in D.C. I think you are thinking of the wrong doctor.
I do not believe the poster's doctor is having any legal battles with insurance companies.
Posted by Hoops123 (Member # 18333) on :
Good luck finding one
Posted by seibertneurolyme (Member # 6416) on :
TF,
Yes I know the doc is in Maryland. He has told his patients about his current legal battles with insurance. With his permission there is a post on MDJunction and the doc may also have posted something on his face book page.
Nothing on facebook yet. I hope if they are going the legislative route that it is done better this time. Last time people were uncoordinated, activists fighting each other, uninformed actions taken.....a real mess. If this had not happened, then this doctor might have some protection now.
Come on, marylanders get your act together! The state medical board is obviously just going to keep doing this until they are prevented by legislation.
Posted by TF (Member # 14183) on :
OK, Bea. Thanks for the info and link.
Posted by kb2013 (Member # 43242) on :
Good afternoon responders, I wanted to see a Lyme literate neuro bc I had an MRI completed by the doctor who initially diagnosed me with Lyme disease (concerned about neuro issues) and that shows s/s of MS which Lyme can mimic. I have to follow up with a neuro bc of the suspected MS (lumbar puncture) and I need a Lyme literate neuro to ensure I am diagnosed appropriately. Thank you for any information you may offer.
Posted by Lymetoo (Member # 743) on :
Just so you realize, there is no definitive test for MS. I personally would treat the Lyme and go from there. I would not personally have a spinal tap unless my life was in immediate danger.
You are correct in trying to find a Lyme literate neuro, because just about every other neuro would say it's MS, not Lyme .. even when they have no clue.
About 1% of neuros would say it's Lyme, even if it is glaringly Lyme.
Posted by Lymetoo (Member # 743) on :
I would advise you to assume this is lyme disease. Skip the lumbar puncture. Skip the nearly impossible search for a lyme literate neuro. Get some good agressive lyme treatment.
I will bet that your so-called MS symptoms go away.
If they don't, you can always look into MS later. You can always try their meds later after you have gotten rid of the lyme. You most likely won't have to, however.
I know a person who treated for MS for 1 year or more, only to eventually be told, "Well, we think now that you never had MS. We think it was an infection that you had."
This was a coworker. She never had lyme as far as I know. They had her doing some bad type injections in the morning. Made her late for work and terrible side effects.
A young woman.
Then, tell her that it was all a mistake! Yep.
Many people are being treated for MS but they really have lyme. The symptoms are identical, the brain scans look identical, etc. At least one lyme literate doctor believes that the so-called MS will one day be acknowledged as lyme disease. So, I would not waste any time or money looking into MS. I researched it a lot during my bout with lyme.
And, since there is no cure for it, it makes sense to me to treat the disease that is curable--lyme-- and then pursue MS if MS symptoms still remain.
Posted by GretaM (Member # 40917) on :
I agree with TF and Lymetoo.
Some of the MS drugs are very immune inhibitive.
If there is even the smallest chance lesions and symptoms are caused by an infection (of any kind), best to address that, before embarking on Big Pharma's MS Train.
Posted by kgg (Member # 5867) on :
There is a search on Lymediseaseassociation's website. You can put in what specialty you are looking for, your zip code and it will give you the info you are looking for.
Be forewarned it only allows you three accesses a month. Not sure why.
When you searched there, was the selection of research good? Was it helpful?
Posted by kgg (Member # 5867) on :
Yes. I used it to find Lyme literate cardiologists. There is a button to scroll down and look for the specialty you want. After you get a few names. You may want to contact the state support group leader of the state they are in and get some feedback from them about the doc.
Good luck!
Posted by Lymetoo (Member # 743) on :
Also .. some MS drugs are deadly. I sure wouldn't want to try that before antibiotics!