Does anyone here live in the corridor between Mass and D.C.

I'm in Connecticut but my doc is in DC so I travel there a lot. Does anyone live in that area? I would be interested to meet in person with someone here who shares this experience. Real life interaction trumps online boards

I'm in Western Mass. Always happy to meet people!

Cool, there's a lot of us close by. Maybe we could set something up at some point. I'm in the northwest corner of CT but it's a small state so everything is close.

Dcd2103- I did see Dr K in 2015. He was the first one to find bartonella and get me on the lyme journey, actually. Less than a year later I lost my insurance so couldn't see him anymore. I really tried, though. Since then I've been going to the top notch guys in D.C. I don't mind the drive

Hi Aerose,

I live in eastern NY state, close to the Mass border near the Berkshires. I would like to join an in-person support group, or just an informal get together. It has been very isolating to have this illness. I have a positive WB (six bands positive). I've been suffering from immune, autoimmune and neurological problems for five years. I have a very poor immune system resulting in co-infections on a frequent basis. Prior to the Lyme diagnosis I got diagnosed with trigeminal neuralgia. I have pain, tingling and burning sensations across my upper right face, forehead and the right side of my skull. I also have extreme brain fog, extreme fatigue that comes and goes. And I have chronic recurring extremely loud ear ringing. I had a tick bite around six years ago but did not receive any treatment at the time. I've been on Doxy/Amox for over a year. At first I had some improvement but my symptoms always come back. It has gotten to the point that I am not improving much on the ABs.

I would appreciate a Dr. recommendation if you or anyone has one. I'm able to travel anywhere between Mass--NYC--DC (I have family in the NYC area and my brother lives in DC). I tried to get an appointment with Dr. H (in the Hudson Valley) but he is not accepting new patients.

One of the biggest challenges I've had is doctors. I found someone in W Mass who finally gave me the Western Blot and treated me for Lyme. But at this point I have only tried Augmentin (at first), then long-term Doxy/Amox in high doses orally. I take some of the Buhner herbs, but I get sicker on Cats Claw. My regime helped during the first few months, but does not seem to be working well at all now.

Thanks for your time - RM

Post Edited (Auspiciousbunny) : 1/19/2020 1:23:27 PM (GMT-7)

I'd be happy to host a few folks at my house in western Massachusetts, or meet people one-on-one, for tea and chatting. This is an isolating illness, and it's so helpful to meet people who know what we're going through. If anyone is interested, then feel free to email me directly (email address available in my profile).

I've been thinking about attending a support group at my local Lyme resource center. I'll let folks know how it goes. Has anyone found a benefit from support groups for Lyme? It's funny that I don't recall ever seeing them mentioned on the forum.

Re: folks looking for doctors anywhere along hundreds of miles of the country, what exactly are you looking for in a doctor? It's great that you have that kind of mobility and flexibility! I know of several Lyme docs in the Boston area alone, but it's hard to know whom to recommend without knowing what sort of treatment you'e looking for.

Yep, the Lyme Resource Center in Northampton is right near me. I actually heard about the center because my craniosacral therapist volunteers for them.

I feel like basically any Lyme specialist could offer you more options than what you have tried so far. So many of them at least know how to treat with a variety of both pharmaceutical and herbal protocols. Is the doctor who was prescribing treatment for you before unwilling to try different things? It seems very strange to keep you on a protocol for so long that was not helping you, and then not to try something else for what sound like some intense symptoms. And then there are other routes people take, like rife and apitherapy. I'd be happy to email you the doctors I know of in Boston, but unfortunately I have yet to find someone good in Western Mass. I know a few people who have had good luck with AC in Brattleboro. I have an AmpCoil device (rife, PEMF, and biofeedback) if you would like to try out that sort of thing and are not electrically sensitive.

How can you tell that your EBV is an active infection? That question comes up on the forum occasionally. I had one doctor who liked to tell me every relapse was due to EBV reactivation, but she never could explain why, just that I had fatigue and neuro symptoms, and that my EBV IgG test results are always very high (but they are high regardless of how I feel...). If there is a way to tell, or a specific tell-tale symptom, then I would be grateful to learn more!

I have not been treated aggressively enough for Lyme, I believe. The doctor who had prescribed the Amox/Doxy has retired, leaving me with no LLMD at this point. I was told the EBV reactivation is shown by elevated levels on certain of these tests:
EBV Ab VCA, IgM
EBV Early Antigen Ab, IgG
EBV Ab VCA, IgG
EBV Nuclear Antigen Ab, IgG
But I probably don't know enough to really answer your question for sure. I have to look up which one(s) are specific to a newly reactivated infection, since the last time I was tested was last summer.

Post Edited (Auspiciousbunny) : 1/19/2020 8:19:16 PM (GMT-7)

I can also check my list and see if I have any llmd’s in/near Boston - if you want to email me as well.

Garion, when I'm in DC next I'll drop you a line, maybe we can meet up.

For the others up north- I don't mind driving, does anyone want to try and find a time/location we could meet up? I would have to do a weekend but I'm all in

I did see dr K. I agree he is very kind and caring. Unfortunately I lost mu insurance though and he only sees patients who have insurance, I think because of the treatments he uses. Bummer because he is a nice guy

Hi everyone,

Thank you to those who recommended doctors.

This list has quite literally been a life saver. You are such a great help and support.

Garion - I will be in DC to visit my brother, probably later next month. Would like to meet up. I can send you my email. (It should be visible in my profile.)

Also, for those who live in eastern NY, MA, or CT -- maybe we could meet for lunch, or something low key, one day -- just an idea...

Best,

Rebecca

I like that idea ^^. I'll forward over my info

Pahoo said...
I understand. I was covered by my work insurance. Sad these days that most professionals cost so much. I paid out of pocket at the end.

He's incredibly expensive, even for a LLMD. I agree though, incredibly kind. Did you see good results with him?