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» LymeNet Flash » Questions and Discussion » Medical Questions » Feedback on Dr. R in NYC for severe neuro lyme

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Author Topic: Feedback on Dr. R in NYC for severe neuro lyme
f13girl
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Looking for feedback on Dr. R.

My symptoms now (since neuro explosion from 1 week of flagyl/3 weeks diflucan for fungal treatment)still spiraling downward. Functional before but has neuro issues/knew I needed to take

a new approach. Now non functional and getting worse each week for 3 months. I'n chemically sensitive. Sick in 1998 with fibrl (headaches,

stiff neck,insmonia,all over muscle pain stiffness, brain fog). Optic neuritis 2006-increasing neuro since then.

Symptoms now-numbness,balance, coordination, weak , shaky, dizzy/sick feeling in head that is unbearable, total insomnia-(averaging 2-3 hrs sleep with medication). Twitching now all over. Head jerking. Eye pain in both eyes/optic nerve.

Intense head pressure. Body jerking all over. Twitching all over. Difficult typing. Trouble speaking at times, swallowing. etc. etc.

Basically in agony. Scared to death of aggressive treatment since I'm so sensitive to everything and not sure I could take any worsening of the jerking,involuntary things,and dizzyiness sick

feeling in brain. Not sure I could bear that. But also miserable right now/in agony. Right now hyper sensitive to all supplements/everything.

Do I need to get checked out again for MS? MRI was clear in 2007. No lesions. No numbness so they did not suspect MS. Now I have numbness that is not going away with this crash (new symptom).

Since 2006/optic neuritis. I did 8 months zhang then combined buhner/had similar crash with major neuro/new symptoms I'd never had before. Stopped all herbs on advice of Dr. zhang- he suspected

Auto immune. took me 5 months to recover but never back to baseline. Added LDN at this time. and SLOWLY added some herbs cats claw,

sarsparilla-was stable for 1 year on LDN. Stopped LDN. Past year was somewhat stable and then fall increasing neuro- sleep started to go down hill/knew I needed to do something.

I'm terrified right now. Terrified of where I'm at and not improving/still going downhill. Terrified of treatment since I feel like drugs pushed me off the cliff.

My local GP who is knew to lyme treatment,but becoming a LLMD-said he cannot treat me and I need to go to a heavy hitter. He does not suspect MS.

I hope this is readable as neuro is bad.

Posts: 200 | From New England | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
f13girl
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I'm averaging only 2-3 hours of broken sleep with medication (trazadone). Ambien did not work either.

Also seeing LLMD/Nurse practioner/naturopath who is local and has lyme herself. She prefers herbs but also uses abx-likes bicillin shots if abx is necessary.

She believes I'm toxic- so put me on detox vitamin kit (perque)- but I've continue to go downhill since on kit (numbness leg/foot, hand arm on left side which is not going away last 2 weeks).

she wants to do a combo abx to wake system up followed by deseret bio lyme,bartonella, babesia,brucella series. Given how overly sensitive I am to everything right now

. She said it was a priorty to get me sleeping, but thus far trazadone she prescribed is not working for me/overcoming brain stuff that is going on.

My husband wants to bring me to mayo clinic..........

Posts: 200 | From New England | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
Hoosiers51
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You will probably be best working with an LLMD that uses a lot of detox and is open to treating with herbals.

Antibiotics may have to be introduced only after you have found some detox methods that work well for you.

There are a few LLMD's that use such an approach. I remember in the book "Insights into Lyme Disease Treatment" that interviews 13 Lyme literate practitioners....there was one guy in the book on the East coast that sounded like a well-rounded LLMD....meaning one that is willing to use herbals for sensitive patients. I can't remember his name, I will try to find out.

I would avoid Mayo. I went there and they didn't even run a Lyme test on me because they were so sure I didn't have Lyme. They will not be into "detox" at all....if you claim to be sensitive to things, they would probably tell you it's in your head or there is no treatment for those kinds of sensitivities.

Mayo caters to people that have well-understood illnesses, and everyone else is crazy according to them.

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djf2005
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dont do mayo clinic please, it will be fruitless.

get on some basic detox like pekana drainage kit, it may help

perhaps back off the drugs for a time

--------------------
"Experience is not what happens to you; it is what you do with what happens to you."

[email protected]

Posts: 2269 | From Lansdowne, Pa | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
Hoosiers51
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ps--if you are sensitive to drugs, Bicillin would probably be a good option for you, because it isn't as damaging to the body as some of the other drugs.

But before you start, you would still want to be sure you're detoxing well. Which means eating very clean (no processed foods), having good bacteria in your gut, keeping your lymphatic system moving, keeping your bowels moving with enough fiber, etc.

Some LLMD's prescribe Low Dose Naltrexone, so if it was helping you, you may want to get back on it.

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Hoosiers51
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It was either Dr. B in NY or Dr. M in NY that I'm thinking of.

Just check this link for the names:

http://www.amazon.com/Insights-Into-Lyme-Disease-Treatment/dp/0982513801/ref=sr_1_1?ie=UTF8&s=books&qid=1267453721&sr=8-1

The names of the doctors are in the middle of that long paragraph summarizing the book.

I don't know if this would be the best doctor for you or not, I'm just trying to think of who I have heard of in the NE that uses a milder approach for chronic Lyme.

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f13girl
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Yes I added back LDN about 4 weeks ago--numbness that is not subsiding started 2 weeks ago which is disappointing.

I'm not on any drugs/abx in over 12 years .Right now just on the perque detox kit (vitamin based, i can't handle herbs right now), tumeric, a standard process product for degenerative conditions, and probiotics.

My diet has been super clean for past 12 years. Since November been gluten free-- The only drugs I've taken were the 1 week of flagyl/ 3 week difuclan at end of november that took my weakened state and pushed me over the cliff into neuro hell. I also had thrown in some strong herbs in Decemberafter which probablydidn't help things.

So scared since treatment (the buhner and now this) have made me so much worse -create some type of neuro flare . This one seems so bad (i'm sicker now) and so extreme I'm not sure if I'll come out of it. A friend of mine who is seeing Dr. R in NYC said I need one of the top notch aggressive LLMD's like him.ButI"m not sure if my body can handle that? I don' t know -terrified of it all.

I'm so torn since I know treatment seems to trigger some type of neuro AI reaction? Not sure- I know I have to do something.

The NP I'm seeing who is local who is LLNP- i know likes bicillin shots. I"m not sure she's figured out how sick I really am. She said she brought herself back from thinking she was dieing on the couch toland of living. But- the neuro degen is a different ball game.

Posts: 200 | From New England | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
f13girl
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Also I too ill to travel to NYC right now--
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Chronic Triathlete
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i've saw dr. r for over a year and now see dr. m in nyc. email me if you want some feedback on them.

.ct

--------------------
10.24.07 Sick
03.31.08 Diagnosed IGeneX WB with Bb
04.08.09 Fry Bart

Updated 02.06.10 On an ABX break since July 09, gluten-free, lots of exercise.

My blog: http://www.chronictriathlete.com/wordpress

Posts: 199 | From Brooklyn, NY | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
KS
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In my opinion, you need to get on antibiotics. I think alternative treatments are a great adjunct therapy but should not be used solely to treat lyme disease. Clearly you are getting worse and I can't help but think it could be the lyme getting worse because you haven't treated it.

Flagyl is a tough drug for many....

Many have had success with Bicillin injections with very little side-effects.

Dr. R is excellent, although very expensive. I think he might be the right doctor for you given your symptoms.

I can give you more feedback on him if you are intersted...PM me...

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Rumigirl
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You could consider Dr. H's in NY; they use both abx and alternatives, like herbs, Pekana drainage remedies, etc. They are more thorough than some of the others in my experience.

Each office has its strengths and weaknesses. And, although you are really sensitive, and may have to go very slowly, I agree, that

you really may need abx. It sounds like you are going downhill through lack of treatment. but the treatment will have to be titrated very carefully. You need someone who is extremely experienced. Dr. H's office is.

PM me, if you like.

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lyme987
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I had pretty much had the same symtoms and

thought I was dying. I saw Dr. R two months

after being diagonised. (Had lyme and all

coinfections for probably 20 years) I was

functinal again in about 4 months after

intensive IV and orals and supplements. It's

been 1 1/2 years, still fighting, although able

to work part time. PM me if you need to know

about him. Would be happy to help. He is

extremely knowledgeable and probably saved my

life.

Posts: 298 | From usa | Registered: Aug 2009  |  IP: Logged | Report this post to a Moderator
   

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