posted
Desperately in need of a Lyme Literate Neurologist preferably a neuromuscular neurologist. I live in North Carolina, but willing to travel anywhere on the East Coast (NE or SE) at this point for the right Doctor.
I have a long history of chronic neuro Lyme disease & co-infections/TBI. Unfortunately, I now have a Rare autoimmune neuromuscular disease that causes my immune system to attack & destroys my nerves & muscles. I also have biopsy confirmed small fiber neuropathy and dysautonomia/POTS. Even have atrophy of my vocal cords leaving me difficulty talking, eating etc. worried it's starting to turn into ALS.
Been treating with traditional & even trial neurological medication protocols & I'm just getting worse each day. I really need a neuromuscular neurologist that understands the chronic Lyme component.
Any recommendations/referrals would be ever so much appreciated!!
Posts: 157 | From Colorado | Registered: Aug 2010
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
rosiegeorge
Have you been treated by a LLMD in the past ?
Neurological medications will not get rid of Lyme and company.
I can send you Neuro LLMD names, 1 is in New York and 1 is in Connecticut.
Or I can send you LLMD in North Carolina.
I suggest you join your area's Lyme support group. You can ask members about your area doctor's that treat late stage chronic Lyme.
posted
Unbeknownst to me,I had undiagnosed & untreated Lyme disease for 28 years. But in 2010, I was rebitten by "Super" Tick and through CDC positive western blot testing, I finally was diagnosed with Lyme disease & 7 other Co-Infections. I've been under the care of many LLMDs, LLNDs and countless Lyme friendly doctors, and homeopathic practitioners.
I've had just about every possible treatment imaginable from traditional IV & Oral antibiotics, to full natural remedies/protocols, detox, rife, devices, etc. trying to save money to go the clinic in Germany is my last step.
At this point Lyme & Mycoplasma are biggest culprits causing all my neurological damage. Even my current LLMD thinks we need to get a Lyme knowledgeable neurologist involved.
So I'm covered in the LLMD/LLND spectrum. Please let me know if you have any neurologist suggestions. Thanks so much for responding!! ππΌ
Posts: 157 | From Colorado | Registered: Aug 2010
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posted
There's very little options here in my states for LLMDs and when I first moved to NC from NY/NJ I met w/ the local Lyme group who also agreed. Unfortunately I'm mostly bed bound these days so I'm only able to go out for medical appts. @ this time. So please message me with any names you might have. ππβ€οΈβ€οΈ
Posts: 157 | From Colorado | Registered: Aug 2010
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
rosiegeorge
Sending you private message.
It's 2018. . . A new year. . . Time to get you feeling better. π We will help you anyway we can, good luck dear.
Posts: 2977 | From Florida | Registered: Nov 2016
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Have you had IVIG? That might be helpful. To try it, you need a doctor who can test you properly to see if you qualify, which many, many people with TBD's do. I know of 3 LL neurologists who can do that.
Unfortunately, I need to clear out my PM box to PM you, and I don't seem to get around to do that, as I am in a similar boat: couch and home-bound. Although I have way too many other conditions, too.
I worry about putting all your $$ into a trip to Germany, as too many others have done that to no avail, beyond temporarily at best. ANd then you'd likely be tapped out financially.
But I understand your desperation---quite personally.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Yes my disease qualified me for Ivig coverage by insurance believe it or not!! Unfortunately I developed aseptic meningitis from the Ivig πΏ Took me a very long time months & months to get over that! I'm still not quite over it as still have daily headaches, but better than the severe migraines and brain swelling it caused me. My next step in treatment is plasmapheresis. But trying to get that done bloodlessly is the biggest obstacle I'm facing now. I've done the research. It's possible using Pentastarch or Hetastarch. Just trying to get the doctor and hospital and insurance to agree is my next hurdle. But I won't do a blood product ever again. Having meningitis was a nightmare!! It did not agree with my body & the IVIG reactivated all my old co-infections! It was so crazy! I felt like I had Lyme, bartonella, RMSF, Babs, mycoplasma all over again. What's even crazier is I displayed active symptoms & when they sent my bloodwork to labcorp all my co-infections Labs came back IgM & IgG POSITIVE. Took me a good 6 months to recover from Ivig. It was like I was bit all over again. It was insane. I literally almost died the first 2 days I was in the hospital. They had to give me not only antibiotics & steroids IV but intrathecal (directly into the spine). Because my brain was swelling so bad. The steroids really messed me up, but I had no choice. They saved my life. Lyme has almost killed me countless times. I hate these little buggers!!!
Posts: 157 | From Colorado | Registered: Aug 2010
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posted
Some here sent me a referral for a neurologist in NYC but they don't take insurance. First visit is $1,500 not including testing which they can't say what you might need which they said be as cheap $500 or $5,000. She said average is around $1,200 labs. I'm trying to get on disability. Was denied my first attempt and now in appeal. I'm having a hard time just paying my $5,000 insurance deductible. Let alone travel to out of state when your wheelchair bound. Ughh. Having Lyme disease is so expensive!!! I really want to see this doctor! I'll just have to wait until I see if get disability!
posted
Yes my disease qualified me for Ivig coverage by insurance believe it or not!! Unfortunately I developed aseptic meningitis from the Ivig πΏ Took me a very long time months & months to get over that! I'm still not quite over it as still have daily headaches, but better than the severe migraines and brain swelling it caused me. My next step in treatment is plasmapheresis. But trying to get that done bloodlessly is the biggest obstacle I'm facing now. I've done the research. It's possible using Pentastarch or Hetastarch. Just trying to get the doctor and hospital and insurance to agree is my next hurdle. But I won't do a blood product ever again. Having meningitis was a nightmare!! It did not agree with my body & the IVIG reactivated all my old co-infections! It was so crazy! I felt like I had Lyme, bartonella, RMSF, Babs, mycoplasma all over again. What's even crazier is I displayed active symptoms & when they sent my bloodwork to labcorp all my co-infections Labs came back IgM & IgG POSITIVE. Took me a good 6 months to recover from Ivig. It was like I was bit all over again. It was insane. I literally almost died the first 2 days I was in the hospital. They had to give me not only antibiotics & steroids IV but intrathecal (directly into the spine). Because my brain was swelling so bad. The steroids really messed me up, but I had no choice. They saved my life. Lyme has almost killed me countless times. I hate these little buggers!!!
Posts: 157 | From Colorado | Registered: Aug 2010
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