I saw a post once where someone said that they spent a lot of money with a NY doc and was still sick.
Has anyone here seen the NY docs and NOT gotten well, or anywhere in there lyme treatment?
For the ones who are seeing them, how much better did any one of these docs get you? Did it take a long time (just trying to find out if it's worth it all)?
Moderators, could you please not move this to seeking as I would think (just guessing) most seasoned patients are not in the seeking section very often (especially the ones seeing the hot NY docs)?
Posted by Keebler (Member # 12673) on :
- Rather than seek out just "NY docs" (whatever group that is supposed to be) - it's important to see an:
ILADS-educated Lyme Literate Medical Doctor (LLMD)
or an ILADS-educated LL ND (naturopathic doctor or one of similar education).
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor - starting with assessment / evaluation. -
Posted by Catgirl (Member # 31149) on :
Thanks Keebler (the doc I'm referring to was ILADS trained).
Posted by Keebler (Member # 12673) on :
- Are you seeing an ILADS-educated LLMD, then and not getting better?
Of course, not everyone gets better. Some do well. Some achieve various stages of remission. Sadly, some do die.
It's just the way this set of diseases works.
No two doctors are exactly alike.
Even with ILADS as a common thread, each LLMD or LL ND has their own methods, strengths and experience set.
No two patients are exactly alike.
There are so many different combinations of infections, so much damage that often occurs before a proper diagnosis, and just so many variables.
Trying to figure out exactly what you are asking.
Seems you are not happy with your current doctor. Would like the best but are skeptical and rightfully cautious as to if that would matter, anyway. ?
No one can say how anyone can do. There are no guarantees. But, if we can find the most experienced doctors (and it may take more than one) . . . and we do the very best we can with our own self-care . . . then we are doing the best we can.
You asked: "Did it take a long time?"
Well, it can take six months or several years. It just depends upon the complexity of each person's case.
As we work through all this it is important to maintain hope because many have gotten better. That's the goal.
Progress & Success Stories -
Posted by Keebler (Member # 12673) on :
- I'm not at all trying to steer you away from a LLMD to a LL ND, however, as you seem unhappy or uncertain of your current care, you may want to look over the articles and books here by various LL authors.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posted by Catgirl (Member # 31149) on :
My doc is ILADS trained. Sometimes I wonder, though, if I should just cough up the money and go to NY. I am making some progress, but I have a lot of co infections. I've heard the famous docs there are on the cutting edge though, so I guess a part of me wonders if you get what you pay for.
Posted by Keebler (Member # 12673) on :
- Can you go and attend some of the area support group meetings for the areas that you are considering?
That would give you a chance to compare progress notes.
There may be some things others are doing that could help but might not necessitate your changing doctors (i.e. gluten-free, liver support, etc.)
There may be some employing specific actions such as heavy metal detox, or addressing parasites. For many, these are key pieces to the puzzle but not all LLMDs are experienced in those areas.
The online support group for www.LymeDisease.org may also be a good place to gather details:
Links to many articles and books by holistic-minded LL doctors of various degrees . . . . -
Posted by lyme in Putnam (Member # 11561) on :
I'm in ny and I go to ct. I don't know who knows what but I still feel the same. Posted by TF (Member # 14183) on :
This is the wisdom I have gained over the last 10 years regarding lyme disease:
Lots of doctors treat lyme disease but only a few know enough to get rid of it for a person. Your job is to find one of those few.
Go to the very best lyme doctor you can afford, and your chances of getting rid of this disease will be the best.
Your chance of getting rid of lyme is directly related to the doctor's experience and expertise in treating this disease.
If you begin thinking or definitely conclude that your current doc doesn't know enough to cure you, you MUST move on. If your doctor runs out of ideas on how to help you continue improving, or doesn't know alternative meds when you can't take his first prescribed med, etc. these are indications that he has come to the end of his knowledge in your case.
When you change doctors, always be sure you are moving to a better doctor.
Now, here are a few threads on the subject of who is considered a top doc and what the top docs do that distinguishes them from lesser lyme docs:
If you want my opinion of who is a top doc on the east coast, send me a private message.
Posted by lpkayak (Member # 5230) on :
there are many ny docs i know a lot of them well the ones i kno are all ilads but also ALL DIFFERENT
thats the way it is with lyme...we dont know all the answers...different llmds follow ilads but also "do their own thing" for different reasons
Posted by Lymetoo (Member # 743) on :
What's so special about NY drs? I think the NY list stinks except for a few doctors.
yes, I'm moving this
LYMENET MEMBERS NEED TO LEARN TO HELP EACH OTHER BY CHECKING "SEEKING A DOCTOR" EVERYDAY.
IF YOU RECEIVED HELP THERE, WOULDN'T YOU LIKE TO GIVE BACK?
will move this in a bit
Posted by jer69 (Member # 34046) on :
" If your doctor runs out of ideas on how to help you continue improving, or doesn't know alternative meds when you can't take his first prescribed med, etc. these are indications that he has come to the end of his knowledge in your case."
That happened to me with ny doc G. He ran out of ideas so fast it almost killed me. j
Posted by Catgirl (Member # 31149) on :
I do go to Seeking to help out and give new patients or members names of Drs all the time. I never go there for advice, especially when I'm looking for responses from people who have already seen the top docs in the country (Dr. H.).
I may be wrong, but I'm guessing that 90% of us don't actually look for details in Seeking for anything other than providing doctors names for people new to the lyme world. Lord knows, I don't (I primarily hang out here in medical questions world (ha ha). There's just more interesting stuff here.
Rest assured though Lymetoo, I do give back in Seeking.
Thanks for giving me some time here. :)
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Lymetoo:
LYMENET MEMBERS NEED TO LEARN TO HELP EACH OTHER BY CHECKING "SEEKING A DOCTOR" EVERYDAY.
IF YOU RECEIVED HELP THERE, WOULDN'T YOU LIKE TO GIVE BACK?
-NO no no... I was not speaking to YOU!! I'm speaking to the fact that you felt you had to post this in MEDICAL... because people are NOT going to Seeking to help those who need help!
I'm fussing at the membership as a whole. That is why I left this here.
Don't you love the extra exposure now!!? Posted by Catgirl (Member # 31149) on :
Ha ha! I just appreciate everyone's advice here. You've helped me a lot too! :)
Posted by Nicole_Denise (Member # 20620) on :
Hi Catgirl,
I've only seen one actual ILADs LLMD, but I have heard talks by several other LLMDs (follow research etc, not members of ILADS)
I think one of the most important things is years of experience. There is a very good doctor I know of who had to retire because of treating Lyme, and so he believe that pretty much everyone can be cured by 2 years of antibiotics. However, the ND I currently see sees a lot of his previous patients who got sick again after starting antibiotics. Since he had to retire, he doesn't see this.
I also think just how you match with your doctor personality-wise matters a LOT! You have to trust your doctor's plan, and be comfortable enough to talk to them about everything that concerns you.
And I do think its very possible that not every doctor who treats Lyme is great at it. You don't have to settle for someone who is just willing to treat- you can find someone you like who seems to have experience.
LLMDs are wonderful people who risk a lot to treat Lyme, but they are not all equal. It is ok to be unhappy with an LLMD. In fact, it is ok to be unhappy with an LLMD other people like. we all want different things in a doctor.
I don't know anything about doctors in NY though, other than the "specialists" my uncle (a doctor in NY) thinks I should see...meaning Dr. W and the people who make the IDSA guidelines.
Posted by Lymetoo (Member # 743) on :
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