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» LymeNet Flash » Questions and Discussion » Medical Questions » please read..dr m in nyc ......NG

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Author Topic: please read..dr m in nyc ......NG
nomolyme
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i had asked for a lyme doc in nyc and was given dr m in nyc amongst others..i would not have wasted my time to travel 2 hours to get there for him to say igenix is unreliable..and tests most people pos!!

he then went on to say that prety much i was nuts! an the pain is coming from me being so depressed..duh coz im sick with pain...when i asked him why i have pain in my shoulders he said i w as too tense!

he is a reumatologist.i would never have gone to him if i knew that...he said i dont have lyme coz he has seen lyme patients etc.

please do not waste ure time to go to him

..getting tested at stony brook...is that reliable as igenix? coz they did take blood from me to test for lyme at stonybrook..

Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
Keebler
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-

I'm sorry that you had this experience. And, sorry, too, that I doubt that the lab is tops. Still, sometimes it works out.

Some of the doctors' list are compiled by a combination approach. The lists do not guarantee that all doctors are ILADS-educated or ILADS- member LLMDS.


It's after the fact now, but it is helpful to also connect with area support groups within a certain radius to the doctor for some personal experiences of patients with any doctor on that list.


Also calling the doctor's office and asking the office manager of the doctor's affiliations regarding lyme groups can sometimes be of help, if they will actually have a short conversation with you.


If you can recall who sent you the list, please give this your feedback. That's the only way some of the non-ILADS MDs can come to light.


And, as a rule, and as you know, most rheumatologists are no more educated about lyme than are ID docs or neurologists. They are all pretty much in the same IDSA camp.


Again, I'm really sorry this happened. You might contact the lab at Stoneybrook and find out what bands they test. Was this a Western Blot? And did he order both IgG and IgM? Hope so.


Some patients here have tested positive at Stoneybrook.

-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
nomolyme
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i did call and ask if he was a lyme doc..they said he was!!! i just want u to tkae him off the list...

he thought i was a wack job....he told me he cant help me ..that i need a shrink!!!

Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
nomolyme
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i am so upset..i might have to o to a nursing home..i literally cant take care of myself..i told him this..and he said he dint no what i should do.

i am 51 yrs old now..and getting worse everyday..ya reumies are the WORST DOCS to go to for lyme..no doubt.

Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
nenet
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I don't know who keeps lists but they should definitely ALL be informed of this.

I am so sorry you had to go through that, nomorelyme.


To all:
Is there some centralized person that all the other list-holders check with for updates, etc.? If so do they send out changes (like bad/non-LL docs) to all the list holders?

--------------------
Dr. C's Western Blot Explanation

Lymenet Success Stories

ILADS Treatment Guidelines

Medical & Scientific Literature on Lyme

"Long-Term Antibiotic Therapy Improves Persistent Symptoms Associated with Lyme Disease"

Posts: 1176 | From KY | Registered: Sep 2007  |  IP: Logged | Report this post to a Moderator
nomolyme
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ty ..ima try to hang in there...n e one please pm me for his name if u need it. and keeb ima check now to see who gave me his name on the list.

.its not right that when i called they said that he was a lyme doc..

i had asked alot of questions prior to going to him..about what he does for lyme etc..

i dont think that us lymies are getting n e where in the battle to get better..if n e thing i think we are getting left back..

i have never been so low in my life b4 and im starting to think tht i am crasy..[please help..

i told this oc that i cant go in to a mental ward coz im not suicdal , i cant go into detox coz i ont take that much pain meds..so where do i go and he said..there is no place for me .. [Frown]

Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
TF
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If you tell BettyG, she will inform all the others.

So so sorry this happened to you!!!

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
nomolyme
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it was mbroderick that sent the list...
Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
lymednva
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Pass this info along to Bettyg, Lymetoo, and mbroderick. I know they send out lists. They should also be able to pass the info along to others who have lists. You can PM them and include the URL for this thread.

--------------------
Lymednva

Posts: 2407 | From over the river and through the woods | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
Keebler
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-

LymeNet is a totally volunteer organization and several people help out on lists as their time and energy allows.


It's not a perfect system, but if you post this in the "seeking doctors" forum all those who help should see it.

Unfortunately, these names get on from other organizations and the term "lyme doctor" can include IDSA doctors who are ID docs , etc.

That is why asking about their affiliations can help. If their office manager says, for certain, that they are a member of ILADS, that really helps. It's still not a sure bet, but a good sign.


Of course, it's hard for a newcomer to know all this. So much homework for every step of the way. Still, as a group totally made up of volunteers who are often propped up, everyone really tries hard to avoid these kinds of experiences.


-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
nomolyme
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keeb i know ..its just that when this doc told me that igenix is unreliable my jaw dropped!..im like ok..on to the next...its so hard to stay positve when docs like that dont want to help ...
Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
TerryK
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Sorry about your experience nomolyme. I agree with Keebler, make sure they are ILADS members. No guarantees even with that but at least you have some assurances that they have some reasonable training in this area.

Mike, screen name METALLIC BLUE keeps track of patient reports.

Here is his e-mail from his signature line
E-mail: [email protected]

Hang in there. You will find a good doc. Check with Mike for patient reports.

Terry

Posts: 6285 | From Oregon | Registered: Jan 2006  |  IP: Logged | Report this post to a Moderator
nomolyme
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ok so im back to square one .. i need a doc in ny or nj...please pm me another list? thanks...i `will try to hang in there

.this doc did give me pain meds at least but mabye i should try another route..

.like bionic therapy? or rife? i have sooooo much pain in my shoulders and neck i just want to ..pass out..pain meds help a little,..i nver used to be this sick.....

Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
bettyg
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nomolyme [group hug] [kiss]

i'm so sorry for what you went thru.

i checked my list and they are LISTED as a rheumatoligist. we only know what folks tell us.


fyi, i send updates to ALL listholders right after opening any notifications. I'LL SEND ABOVE INFO TOO!


that's why it's so IMPORTANT FOR YOU LIVING IN THESE STATES to get the info to us so we can help make this a better system for each of you.


they are just names to me with NO PERSONAL EXPERIENCE from me and the others since we all live in different states.

i'll pm you now with more names! thanks for posting.

thanks others above for directing member to me! [Smile] xox

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METALLlC BLUE
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Who is this doctor you saw? PM me. E-mail me and I'll give you an up to date list. Also, my list always includes a questionnaire that tells patients what to ask the moment they make the call . This screens out problems like this.

[email protected]

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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Could long time members with Lyme Lists PM me, I have some big concerns regarding Dr. M. Betty especially.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
nomolyme
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betty i dint get the list....i have been to like 5 roomies since 1996.so i know that most of them say they will treat u for lyme but they wont if u r neg..

now (which i am) even tho u tested pos b4 like me...from igenix..ok thanks so much..i just want to save others from wasting their time...

i walked out of his office thinking maybe i am crazy..i mean i have had mental problems in the past.

.but i used excerise to overcome and now i cant so thats why i am in so much turmoil and he bssically condemned me for excersing too much in the past..!!

i used to go to the gym for two hours...when i was healthy..ther is nothing wrong with that is there? he said yes.

all i know is that i want to do what worked for me b4...everyone is different..at this point..

maybe i should just go get bionic therpay or rife or ozone therapy?> what does everyone think>??i have been to the er 24 times last year...

i do not have a life ..i am older than i posted...almost 52..and i know for a fact that u do not have to get pain as u age..

Posts: 92 | From bethel, ny | Registered: Jan 2009  |  IP: Logged | Report this post to a Moderator
bettyg
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nomolyme, i sent you NY state list; check your profile above [Smile] sorry if i forgot to earlier ... 39 yrs. chronic lyme will do that to you every time.


mike...i sent you name/address of rhuemy mentioned above. [Smile]

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METALLlC BLUE
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Who else here has seen this doctor before?

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
AliG
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IMO- It's always a good idea to seek current feedback from other patients on whatever doctor you decide to try.

I know you've been keeping a record of feedback, Mike, and offering it up to all who ask. I think that's a great service to all sufferers. Thank you for taking that responsibility on yourself. [group hug]

IMO-Ultimately, with these dread diseases, we really need to be our own advocates and need to question everything to be certain that we feel comfortable with our decisions.

It's very hard work and no ill person should have to do this that's why we all voluntarily try to help each other out, the best we can.

Perhaps this Dr.M has drawn fire from somewhere or something. I can't imagine that a Dr. would have ended up on a list if SOMEONE hadn't initially thought highly of them.

This is sad. You must be very frustrated [group hug] , but the name of this game is "don't give up on yourself".

If you KNOW that there is something wrong, you need to know that Drs are human beings and, as such, even the BEST, MOST careful ones CAN occasionally make mistakes.

Shrug it off, find another LLMD and get another opinion. Perhaps ask who the Dr. prefers for TBD testing before you go.

If there's one thing I've learned, it's that fighting TBDs requires perseverance. You'll get there. You'll find help. You will!!!

I'd start with getting another recommendation, e-mailing Mike AND posting my own request for feedback on the board, just in case there's anyone out there who wasn't willing to share info with him.

"Cover ALL bases" & "leave no stone unturned" then you can feel confident when you go to the next LLMD.

[group hug]
Ali

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
Meg
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We have had wonderful lyme Doctors just up and quit treating LD patients, and continue with a regular practice.

Very frustrating when you aren't told this and keep referring patients to them. The only way we can know, is if the patient comes back to LN to tell the list holders.

--------------------
Success Stories---Treatment Guidelines

Posts: 10010 | From somewhERE OVER THE Rainbow | Registered: Oct 2000  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
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I'm still looking for opinions on this physician. It's important I gather data. Also, I've requested that nomolyme provide her phone number privately by e-mail so I can contact her for security purposes. I'm receiving extremely conflicting reports on this physician and before I remove a physician I must know more.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
AliG
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FWIW- I've heard that Stony Brook Lab has an excellent reputation. It's the doctors there that tend to leave much to be desired.

I don't think that I would discount a Dr as LLMD because s/he has a preference to have labs repeated there.

Why would he draw labs if he thought you were nuts?

Perhaps there has been a communication problem? Most LLMDs will not Rx ABX without some sort of reasonable clinical evidence.

Perhaps s/he is waiting for the labs to rule out coinfections?

I don't know what to say. I hope that it was just a miscommunication/misunderstanding because that does sometimes happen with Lyme.

I hope that you can get to the bottom of this Mike.

Please keep us posted when you hear the lab results.

I'm sorry that you had such an upsetting experience.
[group hug]
Ali

--------------------
Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
   

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