The best diagnosis is done by a Lyme Literate Medical Doctor (LLMD). This is a doctor who is highly experienced in the diagnosis and treatment of Lyme disease. If you are looking for Lyme Literate Medical Doctors (LLMD)
posted
I think what many people who are new to Lyme don't understand is that this is not about the doctor who is closest or most convenient. It is about the doctor who knows what he/she is talking about and will get you well. The closest doctor of this type may be several hours away, or further...I drove 10 hours...do what you've gotta do, you won't get well otherwise...pussyfooting around locally will only get you so far, unless you happen to live in the right place...you have to go with the experts. And this is coming from someone who has been symptom free for 3 years...I stop by here every few months to see how a few of my old friends are doing...I am over it and on with my life...
Posts: 106 | From The Moon | Registered: Sep 2002
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posted
Matthew it's great that you come in here now and then to see your friends. More people who've become "normal" need to do that.
They need to know that "normal" is VERY possible. NEVER GIVE UP!!!
Kudo's Mat
-------------------- "I may not be able to change the way the wind blows but I can adjust my sails"
"When we don't try something for fear of looking bad, we already look bad to ourselves." Posts: 7 | From Missouri | Registered: Apr 2006
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posted
I know I am coming into this conversation real late.. however, I am in need of some information. My boyfriend has already been diagnosed with lyme for about 18 yrs now. There was a nice lady that lived in Anchorage, AK for a while and she said there was a doctor here that was willing to work with lyme patients and one of the clinics... I very much would like her to reply to my email, for I am in desperate need of a doctor here. My boyfriend is deathly ill and the current doctor just thinks he is making things up. We have had both dogs sick, and my cat has died from this ailment, and still the doctor isn't helping us. If anyone knows the name of the doctor at the clinic in Anchorage AK, please email me at [email protected] thank you very much.
Posts: 1 | From Eagle River, Alaska, USA | Registered: Mar 2005
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by AK Stranger: I know I am coming into this conversation real late.. however, I am in need of some information. My boyfriend has already been diagnosed with lyme for about 18 yrs now. There was a nice lady that lived in Anchorage, AK for a while and she said there was a doctor here that was willing to work with lyme patients and one of the clinics... I very much would like her to reply to my email, for I am in desperate need of a doctor here. My boyfriend is deathly ill and the current doctor just thinks he is making things up. We have had both dogs sick, and my cat has died from this ailment, and still the doctor isn't helping us. If anyone knows the name of the doctor at the clinic in Anchorage AK, please email me at [email protected] thank you very much.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
quote:Originally posted by AK Stranger: I know I am coming into this conversation real late.. however, I am in need of some information. My boyfriend has already been diagnosed with lyme for about 18 yrs now. There was a nice lady that lived in Anchorage, AK for a while and she said there was a doctor here that was willing to work with lyme patients and one of the clinics... I very much would like her to reply to my email, for I am in desperate need of a doctor here. My boyfriend is deathly ill and the current doctor just thinks he is making things up. We have had both dogs sick, and my cat has died from this ailment, and still the doctor isn't helping us. If anyone knows the name of the doctor at the clinic in Anchorage AK, please email me at [email protected] thank you very much.
posted
HI IM NEW HERE IM LOOKING FOR A LLMD IN MY AREA I LIVE IN SANANGELO TEXASI WAS TOLD BY AN ALTENATIVE DOCTOR I HAVE LATE STAGE LYME IVE HADE SYMPTOMS FOR YEARS
-------------------- pbm Posts: 2 | From San angelo | Registered: Dec 2006
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posted
HI, I'm new. i live in montana. "there's no lyme disease in montana" per montana health services.
was diagnosed by md in colorado springs, colorado. he has saved my life. been sick for 3 yrs now.
i keep herxing. having a hard time staying on antibiotics. had to swithch to iv zithroma every other day. only on 125 mg. still herxing. trying to ride it out but having hard time.
Posts: 76 | From Kalispell, Montana | Registered: Dec 2006
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posted
This link isn't working at all now. I put in all kinds of places in the US and it won't list anything.
Posts: 18 | From MI | Registered: Mar 2007
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posted
Sorry about that! That was an old link. It is now updated.
Thanks for bringing this to our attention.
-------------------- Jenifer Stolow LymeNet.Org Webmaster Posts: 318 | From Upstate New York, USA | Registered: Feb 2001
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bettyg
Unregistered
posted
Please go to SUPPORT GROUPS, left-hand side column by state.
Click on the nearest group leader for advise. Read if they want emails or phone calls per THEIR request Do NOT email; many are too sick to reply; thanks!
welcome! since this is your 1st post, please tell me more.
The reason is we have trolls and spies from IDAS, infectious disease associated society trying to get names, phone nos/addresses so MORE of our LLMD, lyme literate mds can be brought up on charges from that state's health dept. like:
Dr. Jemsek in NC, and Dr. Charles Roy Jones, Conn; almost 2 years of hearings over $250,000+ OUT OF POCKET for lawyer's fee to defend him. Now I hope you understand. If you don't, go to activism and read the posts there about specific drs., especially Dr. Jones who had his LAST hearing in conn! DECISION IN SEPT. whether he keeps his medical license or not! thanks
You can PM me OR ANYONE ELSE, by going to right side of MY/their name shown on this thread, click on 2 people by envelope....that's a PM!
be sure to sign BOTH LYME PETITIONS, and ask family, friends, co-workers, church members, orgs, and all you know OVER 18 sign this too.
to meet the 50,000 signatures for LDA's petition, and there's over 5200 on lynn's going to congress.
i'm pretty sure the UNDER THE SKIN LYME DOCUMENTARY is in there, but if not, check right now in ACTIVISM BY KRIS KROFT, one of the folks involved in this important lyme project!
they have a "trailer" to view IF YOU HAVE HIGH-SPEED INTERNET; folk like me with dial-up can NOT view it.
it's 20 minutes long and will give your family/friends extra knowledge what it is like to have lyme and all the political implications plus health insurance NOT paying our lyme bills, appts., labs, blood tests, etc
SUPPORT GROUPS .... LYME FOR ``YOUR'' STATE! See below!! 8-19-07
You might be interested in joining your online state yahoo group. All are set up the same way with the state name and lyme run together as one word, http://health.groups.yahoo.com/group/STATENAMELYME, e.g. newyorklyme,
except for 4 states which have a hyphen between the statename and lyme, e.g. southcarolina-lyme. Those states are SC, WY, ND, SD.
The groups were set up by Phyllis Mervine of CALDA, Calif. LDA, to help create an infrastructure for the Lyme community for patient support, local resources, and political action. thx Phyllis!
update 10-23-07, now 1200 members NATIONWIDE on her yahoo group list !
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posted
Hi, I was just dx with LD on Tuesday by my General Dr., finally (after asking for numerous blood tests for the last 2 years) by a positive Western Blot. In any case, she referred me to an in-house specialist, which I am not feeling comfortable with going to.
Can someone please give me the name of an LL MD, I really want the best. What makes it difficult is that I also have Chiari Malformation, which I had brain surgery for already (many mimicking characteristics) in Nov 2005. I also have an extremely elevated IgE level, 600X norm and Fibromyalgia. I am female adult 40YO. I am in Orange County NY and willing to travel even up to 2 hours if needed. I was bit in March 2006, had EM, left scar, was treated, bit again this past May, had EM, was treated again with Doxycyclene (again) and just knew I had Lyme the whole time.
Thanks so much
Posts: 3 | From NY | Registered: Nov 2007
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babesiamom
Unregistered
posted
quote:Originally posted by Lou B: Hi LymeNet Flash Users,
The best diagnosis is done by a Lyme Literate Medical Doctor (LLMD). This is a doctor who is highly experienced in the diagnosis and treatment of Lyme disease. If you are looking for Lyme Literate Medical Doctors (LLMD)
posted
You can call IGeneX to find at least a doctor in your area who uses them for testing (that will tell you they have some knowledge of lyme at the very least, because any NON lyme literate doctor is NOT using IGeneX) Their number is 800 832 3200 - it is a backward way of finding someone, but it works
you can also go to ILADS website and search there
You can search for a doctor by also checking the internet on google for co-infection literate doctors on Babesia and Bartonella (of which there are very few)
amazon.com has most of the books published by lyme literate doctors
medscape and pubmed.com will have ANY doctor who has written an article on lyme, babesia, and Bartonella - cat scratch fever - the most common co-infection (considered by the TOP lyme doctors as being the most under-diagnosed vector in the US).
Please do not assume there will be a doctor in your state, or even within driving distance who is truly lyme literate. Many patients fly to get to the "best" doctors.
If anyone has questions, please feel free to email me privately. I am a survivor and have been cured of bartonella and babesia and long-term lyme (20 years undiagnosed).
There is HOPE out there! BabesiaMom
quote:Originally posted by Lou B: Hi LymeNet Flash Users,
The best diagnosis is done by a Lyme Literate Medical Doctor (LLMD). This is a doctor who is highly experienced in the diagnosis and treatment of Lyme disease. If you are looking for Lyme Literate Medical Doctors (LLMD)
quote:Originally posted by bettyg: Lou, I used the referral today, but experienced some problems which I emailed Kim about.
2 things puzzling to me were:
1. I showed I was from Iowa, and then it asked me which cities I was interested in, and then it showed ALL towns individually.
Question: if I wanted to know the names of the Iowa lyme drs. only, I wouldn't be able to find that info without going to 500+ cities listed.
2. I brought up for general dr., vs. specialty ones. I have marked both general & infectious drs. It showed only specialty for Minn. only; NO Iowa drs. which didn't make any sense.
To members: this allows you 3 times to search in 30-day limit; so my experience, it showed I used it twice! fyi only.
Bettyg
Hi I just got diagnosed with back in October of 2007 and I just tested Positive again. I was in a chat room for Lyme and they suggested I come here to seek out an LLMD dr. If anyone could help me I would appreciate it. I live in Wisconsin thank you, whitepedals
Posts: 1 | From Wisconsin | Registered: Mar 2008
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posted
On the Lyme Disease Association web page doctor referral page I get stopped with the "enable cookies" message, can't get past it.
Can anyone tell me how to do that?? I added them to my address book, it didn't help.
Posts: 32 | From Pennsylvania | Registered: Mar 2008
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I have all the symptoms of Lyme, and now fibromyalgia, adrenal fatigue, major sensitivity to light, etc. and I live in the:
02871 02840 02809
zip code areas in R.I. The serum AB test (not sure if this is the same as ELISA?) was negative when I first got symptoms in August of last year. Now I probably need an IFA and a Western Blot?
Do you know of ANY good (and hopefully open to alternative treatments) Lyme literate doctors in my RI area?
Someone mentioned a Dr. G. in Wickford, RI and I had a question for her if she could contact me.
Thanks! L
Posts: 7 | From RI | Registered: Jun 2008
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bettyg
Unregistered
posted
.. also to new posters, this is the info we need from you in order to help you find a LLMD, lyme literate MD:
is this for YOURSELF or a CHILD, WHAT AGE, since some llmds will NOT treat kids and UNDER certain ages.
have you had the western blot igm and igg blood test drawn and sent to igenex lab in calif?
did you see a tick? was it embedded? did you have a bulls-eye rash?
what are your symptoms?
thank you for putting all this info in your post for seeking a dr. for your state.
show the LARGEST CITY near you/YOUR STATE NAME in subject line!
in body text show 4-6 LARGEST CITY NAMES CLOSEST to you being named first; this will help us help you.
lists are by city, NOT COUNTIES! thanks for help us, HELP YOU! *********************************
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posted
Looking for a Doctor in the Tennessee area well look no further than Dr. B. After being treated for the past two years by numerous Lyme docs across the country I finally discovered one who treats the "whole body" and simply does not just prescribe iv/oral antibiotics alone without first examining the impact this dreadful disease has on all systems of the body. Dr. B and his staff are very competent and stay current on the latest treatments known to assist in treating this dreadful disease. His entire staff are christians, know you by your first name and pray for and with you. I can honestly say I was about to lose all hope until March 24, 08 the date of my first appointment with him. Just send me a message if you would like the phone number of this doctor who practices both intergrative and traditional medicine. Sincerely, SWA737Gal
posted
Please contact me if you are in VA, MD or DC and are seeing an LLMD, who treats chronic lyme with traditional and alternative methods, and who participates with BCBS(in network)?
I so appreciate anyone's help and the doctor(s) contact ino if possible. Thanks!!!!
Posts: 23 | From limbo | Registered: Jun 2008
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posted
Lola333NY - I just sent a pm regarding the LLMD in Wickford. He's the only one around. All he sees are Lyme patients - well, almost.
Posts: 79 | From Rhode Island | Registered: Jun 2008
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posted
new to this site please help how to thread? and navigate this site. I am moving to Florida and need to find a Lyme literate dr. down there. I have had lyme for 4 years now and not doing any better after iv and orals in the 3rd year....went undiagnosed for 2 yrs. also tried chinese herbs to treat lyme...anyone else tried them from Dr. Z clinic in NYC??
PLEASE HELP!!!!!
Posts: 1 | From NY | Registered: Aug 2008
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bettyg
Unregistered
posted
sent arm a note to start a NEW POST for himself here....
sent instructions on how to use board, etc.
NEWBIES, PLEASE START A "NEW POST" FOUND IN SMALL BLACK/WHITE BOXES AT TOP/BOTTOM OF PAGE...
show in subject line:
largest/closest city and your STATE, llmd needed
please tell us about yourself: *****************************
is this for yourself or a CHILD, WHAT AGE FOR KID??
go to lower left hand corner and mark box to receive all replies; click send when done!! *********************************************
posted
I am computer illiterate. On the LDA.org webpage there is a password required, yet I can't find where to register it. Help
Posts: 2 | From charlottesville, VA | Registered: Aug 2008
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emla999/Lyme
Frequent Contributor (1K+ posts)
Member # 12606
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