phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Wondering if I am the only one that doesn't have a LLMD. For now I was dx and being treated by an Internist, D.O. and their PA..They seem to be knowledgeable about lyme, especially the D.O.
There isn't a LLMD anywhere near me so for now I feel i haven't a choice. Then there is the cost, so many doesn't accept medicare.
God bless,
Posts: 1058 | From VA | Registered: Oct 2010
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posted
My PCP (Primary Care Physician) has been treating me for more than a year. I was dx by a LLMD and treated with IVs by the LLMD, but then my PCP became very interested in Lyme and felt confident that she could treat me. She's willing to prescribe any abx for as long as necessary. She's a brave dr. and I'm grateful for her. The only disadvantage to seeing her is her inexperience...there's a lot of educated guessing going on between the 2 of us. But, it seems like that's what happens with LLMD's also.
-------------------- Misdiagnosed with CFS for 7 yrs. Diagnosed by LLMD in 2009. Aggressive treatment for 3 years with minimum improvement. Posts: 120 | From FL | Registered: Jun 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- It's a rare GP who has enough education and experience to do "educated" guessing. This will still take a lot of education on the part of both doctor and patient.
And, it's also a very rare GP who is willing to treat lyme for the full journey so it's fabulous that yours is willing. But, it's important that you someone assess they depth of their knowledge, skill and experience (&/or their willingness to learn more) to be sure they will be able to take on the task.
It's important to give him a chance as SGK says but just look out for your future, too. I do hope your GP will stay on board all through the process and be a good guide. We sure do need that in more GPs.
It's not a cookbook, recipe approach as much as it may seem. If you can, find the doctor who has successfully treated many other TBD patients.
If not, well, we all do the best we can but it may take far longer to get there with someone just learning how to drive. Treating any tick-borne infection is nothing like treating most of the infections that most GPs are used to.
And they must know about all of them - and about all the the other chronic stealth infections that can be involved, too. And about all the supplements to help with lessening a herx, or how to compensate for the ototoxicity of some Rx, etc.
Kim,
It's great to hear that your GP is willing to see you all the way through this.
Phyl,
Will yours do the same, no matter how many years and how many combinations of Rx and supplements are needed to adjust and rotate?
Are YOU able to dive in and study full time in order to partner with a doctor who is so new to this? They may honestly think they are knowledgeable but are they really? Oh, they may be. I hope so.
It takes years to get up to speed and most don't know what they don't know, especially about all the different cycles and forms, blebs, biofilm, cyst form, L-form, etc. If you list those words - and the names of the most most prominent LLMD authors - and he know all about them, great!
Does he know about everything on slide #22 (just put that in the page box and hit "enter" key) - then progress from #22 all the way through #47 to see some interactions:
It's so great to hear that your GP is willing to work with you and you don't want to scare him off but I do hope that he loves, loves, loves to learn and is determined to see you to health. -
[ 12-04-2010, 02:39 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD (or any other doctor who is treating a lyme patient) should know about: ----------
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
There seem to be some LLMD in Northern VA but not is the southwest where I live.. I thought I had found one in Chappell Hill, NC but after speaking to the staff and an email from her I think my GP is more informed than she, plus she doesn't accept insurance. I have medicare.
I have searched the board for a LLMD close by but havn't found any.. There was one in Winston-Salem, NC but he has moved to Washington.
I am only a few miles from the NC line. I thought surely Wake Forest Medical Center would have one but all they said they had were the infectious disease control docs.
If anyone can help that would be good. I plan to ask my doc if they know of one near by..on my next visit. I have started my antibiotics and supplements so will see how it goes. I am taking Clindamycin then will start doxy..until I find a LLMD..
I will probably be in bed for a few days .. I wanted to get some Christmas dec. up so have been working on that, just inside ones.. can't do like I once did, plus a short trip to wal-mart. Now to bed for some rest..
Thanks all,
Posts: 1058 | From VA | Registered: Oct 2010
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- While it's ideal to have a LLMD, all things considered, your GP may work out to be just fine for you. I post cautions just to cover all the bases.
If you get a good sense that he's educated enough to be at least a few steps ahead of where you are, it may be fine. If you can't find a LLMD, perhaps your GP finding one for himself as a mentor, will be the next best thing. And then, soon, there may be one more LLMD - him.
As for Wal-Mart. I strongly suggest avoiding ALL big box stores for many months. The sensory overload can take a whole month away from your life from just one trip. Really.
Can you shop on line or ask others to go for you? For the spirit of the holiday season, you might either shop or just browse at a couple smaller boutique stores. Stick to calm environments in smaller spaces.
If you get into a store and the music is too loud, you might ask the manager to turn it down, change it to something calmer but some may not honor your request. I've been told I should just leave if I don't like. Some store clerks say they are not allowed to touch the music controls.
Earplugs are helpful. But, I can't tell you the number of times I had to just leave a cart in the middle of the aisle and made a mad dash for the door. It's a frequent report by others here, too. Really.
In addition to all the sounds (most of which is noise), all the lights, all the scented products can clobber a sensitive brain and that can ruin the whole day. There are still a few smaller stores on the planet. I hope they can stay in business. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I don't believe my doctor would ever call herself an LLMD. She is a family doctor. A general practiioner who has about 50 lyme patients. She also does prenatal care, immunizations, elder care and everything in between.
But, she is ILADS trained. We need more doctors who are willing to treat patients with lyme (especially ones who take insurance) so that the LLMDs who have a lyme only practice aren't thought of as on the fringes.
That's just my two cents.
Posts: 564 | From Tick Hell | Registered: Oct 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Who do you all see? You can PM me, I'm just curious if I know any of them.
-------------------- 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.
posted
I can only say My PCP also treated me in the begining but things went terribly wrong,although
he was very interested in learning. When I came down with a horrible swelling rash last Dec.Poss Serum Sickness.he loaded me up with STEROIDS.
Which was a huge mistake as I have learned here. Just read as much as you can.Good luck!
Posts: 72 | From illinois/wisconsin | Registered: Sep 2010
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