Topic: I had my LLMD appointment and don't know what to think. . .
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I traveled 2000 miles which was exhausting and so expensive! I got back at 2AM, having spent 7 hours just in layover and delays. It took another two hours driving home on icy roads and a moose ran out in front of us. It was the worst trip I ever took and I just can't do it again.
My tests alone costs over 2 thousand and this doctor, to my surprise, relies completely on tests. I actually tested positive for babesia, lyme and erlichia but negative for bart which has been the demon on my back for over two years.
So he is only treating babesia with mepron and zithromax. He said the erlichia could cause the bart symptoms and does not believe I have it. That is scary as you know what a dark place bart can take you to when it is ignored.
But right now my symptoms are all babesia. That happens with me. I cycle through the diseases, put one down and another pops up. It seems like it would be a good idea to treat them all at once so that the others do not have the opportunity to take over again.
Getting a plan to attack all of the infections and not just pick at them one at a time was the whole reason I put myself through this. Frankly I could have come up with this treatment option all on my own.
I do not have another consultation with him for three months. I did ask about treating the other infections and he said the zithromax would keep them under control. I have been taking zithromax for a year and back sliding, which is why I went there. He also told me he doesn't believe in supplements - any of them. Take a one a day.
I was the last patient of the day and I feel his top priority was getting his coat and hat on and out the door, not me. Maybe the mepron will lift some of this depression and despair. I hope so.
My feeling is I don't have anyone that is truly committed to helping me recover from this. The good thing is he was very extensive in his tests.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
sorry to hear this. I have had similar frustrations with LLMD's. Took me 5 tries to find one I was satisfied with.
I sent you a pm!
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I'm feeling the same about mine that I've been with for three years. I'm telling him how to treat me now.
Take your test results and run.
Posts: 1104 | From N.California | Registered: Jan 2008
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posted
That's why we need to do a lot of research on any dr we are considering. Find as many Lyme patients as you can who have seen the doctor and ask as many questions as possible.
I hope that things work out for you in spite of all you said!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
What a pain! I'm so sorry you went through all of that.
Though congratulations on your testing being so supportive - that will at least help to make decisions going forward. A poor leader in an LLMD is one thing, but self-doubt and confusion about whether you even have a certain infection drives many up the wall and interferes with proper treatment.
He definitely doesn't sound like a good fit, or for that matter, an LLMD, since he relies completely on tests for diagnosis, which EVEN THE CDC says is not correct for Lyme, and which is not following the current science for Lyme and other tick-borne diseases.
That would make me question everything he does, since that is such a basic level of misunderstanding of Lyme and TBDs. It sounds like you are of the same mind about that.
There have to be other, better, LLMDs closer by (though they will probably still need a plane flight).
I personally don't know of any that would be less than 2000 miles round trip though. There is supposedly one in Des Moines, Iowa (I think), and there is another one the same distance in Columbia, Missouri. Then you have one in Wisconsin, and some in Central or Northern California, I think.
I can personally vouch for the one in Missouri being an actual LLMD, but their treatment approach may not fit with everyone, so it will still be like trying to find any specialist - you have to find one that works with you.
I'm sorry I'm not much help - I don't know much about LLMD options, especially in your region. Maybe someone else can give you better info.
Good luck to you! It sounds like you have a lot of great tools in your toolbox, so you have a lot going for you. You are determined, informed, and empowered, and willing to do what it takes. You also have a great battery of positive tests.
These are all great tools for getting you better. You just need that last puzzle piece of a good LLMD to be your partner in getting you well, and there really are some out there. Some will even let you go 6 months between visits, with phone consults in between to cut down on your need to travel.
posted
It is hard to find out how a doctor will treat, even if you are very connected in the lyme community. And a doctor's office will not tell you anything if you cold call, for obvious reasons.
I did try to get info before I traveled 3000 miles, but still ended up feeling the doc could not handle my case, and wasn't able to admit it. But then, I'm not sure anyone can at this stage.
How did you select this doc for your trip?
It is hard on everyone, this secrecy and lack of medical establishment support. Hard on the docs who treat us, and on us.
If you have an idea of how you would like to be treated, based on your previous med experiences, maybe try to find a doc who will do that. Of course, what we really want is someone who has answers for our problems, not to have to guide our own treatment.
Hope you will get some reimbursement for the expenses of the doc and testing.
Posts: 8430 | From Not available | Registered: Oct 2000
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Regarding the use of support supplements, this sample chapter may offer some insight - and then the book.
This book is based on interviews with 13 Lyme-Literate Health Care Practitioners. Each practitioner is given one chapter in which to share their healing strategies. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
This is a top rated LLMD with mostly rave reviews. Perhaps it is just me and my expectation that is letting me down. Maybe I am just really annoyed that I wasted so much time and energy treating my imagination.
Oh, but don't let me forget I was diagnosed with bart by another LLMD so I guess I can blame it on his imagination too. And levaquin, which is specific to bart, really helped me until I got tendonitis.
Maybe there is something we learn sharing our symptoms that doctors do not fully comprehend especially when they have not had the diseases themselves. This is a top notch doctor but he is a scientist, short and sweet. Where is that leap of faith outside the test results?
I went to two eye doctors prior to diagnosis that told me my dry irritated eyes was sjogren's syndrome. I argued that I did not have a dry mouth, which is characteristic. In fact the dentist said I had over active salivary glands.
This LLMD and I had the same discussion and he insisted on testing for sjogren's. According to him, Lyme and co-infections do not cause dry eyes so I must be having an autoimmune response. Sounds like "late manifestations" to me!
I have both of those books Keebler. I checked his ratings - most of them are great. There is no question that he is a great LLMD in most regards.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
The well respected Lyme literate neuro-opthamologist in Pennsylvania told me that Lyme and Bart do/can cause the dry eyes!
Posts: 819 | From East Coast | Registered: Apr 2009
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posted
I agree with the people who have said take your tests and find another doctor.
We have been to a lot of top LLMD's, including one that is supposed to be the best world-wide. We have had to keep moving on to try to find one that I was comfortable with.
It doesn't do any good to go to a doctor that you don't trust, for whatever reason. Lyme is so full of uncertainty all around, that you need to find someone you believe in.
Posts: 984 | From US | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
nefferdun, so sorry to hear of your disappointment. Maybe you will get results anyway and that is the most important thing.
I have not heard of Mepron lifting peoples' spirits. If anything, it seems to do the opposite. So look out for that. They call it the Mepron blues. Lots of threads on it. Mepron buddies, etc. are the titles.
Lyme and coinfections gave me very dry eye and very dry mouth for a few years. I doctored for both. Good lyme treatment got rid of both for me permanently. Oh well.
Posts: 9931 | From Maryland | Registered: Dec 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Let me know who you saw so that you can submit a report on your experience. (If you want to).
That way other patients can know what you experienced and what to expect if they think about seeing the same physician.
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is really bad news to hear that Mepron will make me even more depressed than I already am. I will be hard to live with. Maybe that is why he did not give me more to take, more than I could handle.
My 22 year old non-lyme son was recently diagnosed with diabetes so that is also getting me down. He showed us how he tests his blood today and I just had an internal melt down.
I saw an old friend while on my trip and she shared how her son committed suicide - he was suffering from mental illness. So it is very hard to separate the diseases from the other things happening. My emotions are all over the place.
I believe the babesia is causing the dry eyes. I will see what happens and then think about adding Rifampin as it hits both bart and erlichia.
It is true that I need to trust my doctor. I really had my hopes up that this would be the one. I did get something out of this. I learned I have two other infections and I got a lot of tests that might reveal more about my health such as if I have B12 deficiency or mercury poisoning.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Hi all! I'm new here--I was wondering if any of you would know of a LLMD in PA. I live outside of Philly, so any info would be really appreciated. Thankx.
Posts: 2 | From PA. | Registered: Nov 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Hi chevycars, post your question on the "seeking a doctor" forum which you can get to right below where it says "HOP TO". Good luck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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