Have an Appt at Robinhood in Winston Salem. I have Chronic Lyme

I’m looking for a new LLMD. I have Chronic Lyme. I treated for 4 years. I have an appt at Robinhood, in Winston- Salem NC and would like any feedback regarding treatments for Lyme at Robinhood. Do they use IV antibiotics! Also does anyone know of any LLMD’s in NC or SC ? Thank you so much. I’m really sick again and haven’t treated in a year. I have Neuro Lyme effecting speech memory etc.

TY so much for responding. I was never ever symptom free. But I did through a month here and there that I felt ok and much better than I had. At one point I thought I was in remission, due to being able to actually live a life for 3 months w out any thing too bad, w symptoms. I am sick as ever now. I can’t multi task, hurt all over, And speech and word finding is a problem again , too much for my brain I’m in bed the past 2 months for the most part. Anyways I do know about Dr J in DC. But there is no way I can afford his treatments. Unfortunately. I know I could most benefit from IV antibiotics and hope that I can find a Dr who will prescribe this for me. I have great insurance and know that the LLMD’s are cash visits- but need insurance to cover antibiotics and such I’m new to NC. I’m from NY upstate. Any names you can give or any good info from Dr’s who treat, and use IV would be helpful. Do you know about Robinhood at all? I have an appt this Friday.?? I figured I’d try- and see how it is. I want to have another Dr. , in case I don’t like it at Robinhood. I had a lLMD up north, but it’s too far and inconvenient. I have Neoro Lyme and Chronic. Went 20 years misdiagnosed, until 2014 - Thank you again

I went to this practice in NC when lived there. They did not use iv. At the time it was a mix of oral abx and herbs. They had various protocols you rotate through. I would consider them lyme friendly. Maybe they know more now. When I went they were just getting started with lyme (2015/2016).

I would consider dr. S R in chapel hill area. She does not take insurance though and probably wouldn’t use IV although I’m not positive.

Post Edited (k07) : 1/30/2019 8:16:38 PM (GMT-7)

Are you having success with her?

Dr P in Raleigh uses IV for some patients. He likes to see how you respond to oral first. He is very aggressive in his approach. Well, he was with me anyhow.

k07, I may try it in a couple of months too. Good luck to you!

Though I don't personally know Dr. J. F. in Chapel Hill, I do know she's the supervisor of a Physician Assistant that works at Dr. J's clinic in Washington, D.C. So, I would imagine Dr. J. F. probably has some knowledge about what her supervisee does at Dr. J's clinic. But, if that's important, you could always e-mail her and ask.

AnnieAnne said...
Thanks everyone for your responses. I appreciate your help
I did speak w DrJ’s office in DC. I was told the price for initial visit, which was high, but I was willing to do. But then I was told Treatment’s would be out of pocket for IV etc and those where a fortune. So that’s why I decided not to go with Dr. J. Unfortunately. I know Robinhood has many treatments for Lyme, but not IV. They do use Vit C IV along w antibiotics and supplements. I guess I’ll start there for now. I hope it will get me better than I am at least. Has anyone heard of Dr J F a lady LLMD in Chapel Hill? She is another one I’m considering possibly. Thanks. I wish you all well and hope your treatments work to put you in remission.

Yes, the initial visit which is usually about 3 hours long is higher than the others...but I've seen many other LLMD's prices close to that for an appt that is that long.

I don't know how your insurance works there, but I am emailing with someone who is currently getting set up for her friend to do the IV's with Dr. J. She said insurance will be covering it.
I know Dr. J doesn't take insurance...but can't you submit it?

Sorry, I can't be more helpful with the insurance aspect as it's different here in Canada.

The Dude Abides said...
p.s. For what it's worth, Dr. J. F. had a "Public Letter of Concern" issued to her by the state's Medical Board at the end of last February. The phrase "Chronic Lyme Disease" is mentioned, but there's a little more to it -- which is why I'm mentioning it. You may wish to read it.

Note: The letter is not a disciplinary action nor does it limit or restrict her medical license.

Posting the text of the letter or a link to it would violate the Forum Rules, so I'm unable to do so. However, I found it pretty easily, so you'll likely be able to do the same. Just use the information you have, along with the hints I've provided. If you need help, let me know and we can chat privately over e-mail.

Do many Lyme patients need narcotics for pain management? I am grateful that my pain is still manageable and just wish there was a medication that could relieve numb hands.

xlyzd said...

AnnieAnne said...
Thanks everyone for your responses. I appreciate your help
I did speak w DrJ’s office in DC. I was told the price for initial visit, which was high, but I was willing to do. But then I was told Treatment’s would be out of pocket for IV etc and those where a fortune. So that’s why I decided not to go with Dr. J. Unfortunately. I know Robinhood has many treatments for Lyme, but not IV. They do use Vit C IV along w antibiotics and supplements. I guess I’ll start there for now. I hope it will get me better than I am at least. Has anyone heard of Dr J F a lady LLMD in Chapel Hill? She is another one I’m considering possibly. Thanks. I wish you all well and hope your treatments work to put you in remission.

I have seen a doc at Robinhood recently in 2019, 2X so far, and Dr JF in Chapel Hill before him, June and August 2018, then phone consult. Neither mentioned Late Stage Lyme Disease, although my 1st bulls-eye rash was in 2005. An RN with my mother (Alzheimer's diagnosis) said it was a spider bite and I thought the second one was also, but took a picture when I saw it (now that we have the iPhone,etc). A year later I took a bunch of tests on my own and threw in Western Blot which was "almost" positive according to CDC and definitely pos according to Robinhood. Nevertheless, Robinhood said the rash was diagnostic for Lyme. I had read that so did not understand why Dr JF ordered over $3000. worth of testing. Testing Results that I and now, Robinhood have requested without response.
Even the CDC has said Late Stage Lyme may need IV but neither Doc suggested. Why do I know this information and the doctors do not know or do not care. They have treated me like the crowd but I keep reading that Late Stage is bad and should be treated aggressively.
Time is passing and I am worried, a little scared. There are Youtube videos of a LLMD in Lexington, Va. who seems to be current. It is a long drive but I have had symptoms for a long time (thought I was just getting old or was simply in denial).
Am I waiting for full blown dementia or what?
On the positive side, both NC Drs were willing to prescribe according to my requests, after I voiced them.
Why take expensive supplements sold by Rawls through Robinhood when he states in his book that he got well using the Buhner protocol? Which is half or a quarter of the price, if purchased in bulk. Money aside, going to the source is common sense to me. Rawls did not get well using his own supplements.
I can hardly type because both hands are numb. This started about 3 mos after beginning the antibiotics. I was much much better at first and now am worse than ever. I need to order the Buhner herbs but everything seems like a huge chore and I am uncertain about the best approach. I am still unpacked from moving out of mold house after I developed Allergic Fungal Sinusitis.
I am reading "Better Health Guy's" notes from Klinghardt's symposiums. He seems to be way ahead of the pack and using info from Dr Macdonald and Dr. Miklossy's studies. I knew Borrelia spirochetes were found in the brains of deceased Alzheimer's patients, but just read that periodontal spirochetes were also found (Miklossy). I would like to have a doctor that discussed these things and treated accordingly. Klinghardt has stated that he has never seen a Lyme patient who did not also have parasites and and he treats those first. Does anyone know what Dr J in Washington thinks about parasites? So much information...
I would like to hear your experience at Robinhood.

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I think Rawls treated for lyme and then started his supplement business - so he didn’t have them formulated yet??

Also wanted to mention that DrJ doesn’t recommend all those with long standing Neuro lyme do abx.

He does treat parasites - not as extensively as some others’
But he is very good at determining what is needed - very intuituve.

Some of the meds he prescribes: mepron, dapsone,daraprim, Alinia, ivermectin - I think there’s more I’m not thinking of now

Few insurers will cover IV treatment beyond the CDC/IDSA recommendation, you can always ask.