Topic: anyone that has seen a REAL LLMD and if it really made a difference....
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
I have seen so many drs bynow. i couldn't afford a "real " llmd when this all started for me- I mean after I was dx a couple years ago.
so I saw all kinds of alternative and traditional drs. I made a lot of progress and have come very far in recovery and possible cleared of tick disesae, but i have lasting issues for sure.
now my husband got a new job- YAY- that pays a little better and I am even wondering if it is worth it for me to seek a LLMD after all this time and other drs....
I find most traditional drs (in my area) know not only nothing about lyme or other tick disease, but also know very littel about much of ANYTHING!!! it is very upsetting, to say the least.
so now I am again at a turning point in my long traveled road here with the damages of these diseases and I am thinking should I or shoulnd;t I call up the nearest llmd and make that apt. for 4 months away and pay that $$$$$$ , etc, etc, ....
PLUS... do they make you take another iegenex if it's been a couple years since the last one and you have had treatment?????
thank you for your time
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry you having to deal with this situation.
My concern is you will keep wondering about this for a long time to come, wondering if you should have seen a LLMD when given a chance and maybe you could have gotten even better if you had done so. That would "bug" me.
It might help your state of mind and possibly physical health if you do go. And it could be a waste of time and money, but I sincerely doubt that.
Hard to believe especially with the dip sticks you've seen and we all have experienced over the years, but some LLMD's do have more smarts about this stuff than we do.
I would guess the LLMD won't require another IGenex test as long as you already have a positive one, but when you make the appointment you can and should ask.
Hope you are comfortable with whatever decision you make.
LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks tincup.
hmmmm.... but the only llmd nearest me is not a top llmd I don't think.... i still can't afford the top kind,. they charge too much.. like $2000 for first visit NOT including tests, etc...
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I've seen my LLMD twice now and I gotta say I am not impressed.
This person is published in the Lyme field and their works are cited but they don't return my calls.
I really thought I had finally reached an oasis when I found them and made an appointment but this just left me more confused.
I've got an appointment with a different person May. I need more help than just a prescription and a "see you in three months."
If you decide to go that route make sure it's someone who will really work with you. Otherwise you're just wasting time and money you could spend elsewhere.
Posts: 2057 | From Florida | Registered: Feb 2015
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me
Frequent Contributor (1K+ posts)
Member # 45475
posted
Yes, I am seeing a LLMD in MD, and he has helped me make progress. I have a long way to go, but I am making progress.
I can send you his name and more info if you want. Just send me a PM if you would like his info.
Posts: 1431 | From USA | Registered: Mar 2015
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
Jordana, that is it!! I want and NEED someont to help me with all the complications and such that came from the infections. not necesserely treatment FOR them.
sigh.. how do you find one like that????
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
me, thanks
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
How about starting with a lyme literate naturopath. A friend of mine started with a very lyme literate ND last year and her initial fee and follow up fees are so reasonable.
Depending on what state you are in many ND's even take insurance.
Maybe this could be an option for you. Good luck LisaK!
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
You at least need to find someone with good staff. Dr K and so on obviously don't have any extra time to spend with someone but they have good PAs and nurses who can talk people through their stuff.
In my opinion the more familiar I get with this the more I think there are a whole lot of us who should be getting something like the equivalent of cancer care since these infections are so freakin dangerous and potentially so are the treatments.
Seeing as that is obviously a fantasy - finding someone with good attentive staff can probably help. My next doc works in an integrative medicine center so I hope that works out better.
Posts: 2057 | From Florida | Registered: Feb 2015
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LisaK
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Member # 41384
posted
unsure, how do you FIND a ND like that??
I have found 2 near me that help with SOME things but not lyme at all.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
YES Jordana!!! I was just sayingt that last night to my husband! if you have cancer you get an entire TEAM~!!!
that is what I need. God, please help me and everyone else with this
*** my BIG questin is always: how on earth do you find these good drs or their staff without spending tons of wasted money???? that is my biggest fear/problem
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Look for a doc that works out of a center for integrative medicine. These places usually have a naturopath that works there and other alt options inside the place. They're out there.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Lisa, PM TF. She keeps track of the "good" doctors who have a track record of bringing patients across the 100% finish line.
While alot of those doctors are expensive, there might be a few who charge reasonable fees.
She might also know who to avoid so you don't waste your money there.
Posts: 538 | From kentucky | Registered: Nov 2011
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks soccermama, I have that list. there aren't many to choose from around here. and the one that is a possability im not sure how much he knows about 'everything lyme' .
plus, it's always the same on a list: this person says that dr is the best, that person says he was horrible.... it never ends.
i just want to know if anyone that really spent the money on a great llmd is healed or whatever. seems there aren't too many patients like that out there to me.
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
there is one that some say is great, but not everyone, but she charges $2000 for the first visit and that includes nothing. plus its a day's trip for me to get there.
if i know of a sure thing I would do it maybe. is there such a thing? i doubt it
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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posted
Lisa, I posted a thread earlier today. I see you've been on this one, but not that one. Your mailbox is full. I can't respond.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
It's really difficult. I have been on this Lymenet board for a long time. Some people do well & others just keep going around and around in circles.
It's hit or miss if the drugs work or the supplements & naturopathic remedies. All of it is really expensive.
Some of it may depend on your personality. some people are more open to drugs & allopathic medicine, others prefer natropathic medicine.
In any case, natropathic medicine is less damaging overall than abx. Detoxing & natural remedies can make you really ill, too - but drugs seem to have worse side effects.
I know what you mean about cancer but I've seen alot of people get worse from chemo. It depends on the type of cancer & what the chemo is (if it has a good track record with the particular cancer, etc.). I don't know if they would have been better off without chemo & radiation. When I first started treating Lyme/Fibro it reminded me of "do-it-yourself chemo"...
It's just that there are certain illnesses that are "acceptable" & Lyme is not one of them. We get very little support & "iffy" treatments - which can be very expensive, out of pocket costs. Not alot of accurate data to compare treatment success rate. The tests are not very accurate, either.
There's alot of trial & error. What was helpful for me was doing an anti-parasite herbal protocol. Everyone is different. I wish it weren't so complicated.
From my experience it is most worth it to see an LLMD. HOWEVER, as such is with everything in the world, all are not created equal. Just because somebody is an LLMD does not make them compatible to your situation.
I personally would be hesitant to see any doctor that wants a huge sum upfront, I've been to a few doctors that are more interested in the consult fee then the consultation itself. I guess that is why I go 630 miles to see my lyme specialist.
Posts: 106 | From Rural Michigan | Registered: Jul 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lisa,
YES! it is well worth it to see a GOOD lyme doctor. Once I got to one, I was symptom-free in 8 months.
I saw other so-called lyme docs for 2 years before that and got little improvement. 2 years of taking antibiotics for nothing!!
If you are willing to come to the Maryland area once every 3 months, you can see the doc I am recommending. It is $599 for the first visit. Routine half-hour appointments are $299.
You do telephone appointments for the 2 months in between. I believe that a good lyme doctor sees/talks to the patient monthly to keep on top of what is happening. That's what my topnotch lyme doc did with me.
I have MANY people telling me they like him. The complaints are few and minor. I would love for you to see him. Don't know what state you are in.
Let me know.
Also, let me know who is near you and I will tell you the reports I have on each one. I don't want anyone to spend big bucks and then have a bad experience. That's why I stick around LymeNet even though I got rid of lyme over 10 years ago. I want to point everyone to the good doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
LisaK, I imagine looking online for some ND's in your state and checking out their websites would be a good starting point. If it says they treat Lyme you could write in a question or call and ask if they are ILADs trained.
Again, some states recognize ND's as medical doctors and allow then to submit to insurance. If your state doesn't maybe a neighboring state does. You can look this up quickly online too.
I hope you find someone helpful soon.
-------------------- unsure445 Posts: 824 | From northeast | Registered: Jun 2008
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there is one that some say is great, but not everyone, but she charges $2000 for the first visit and that includes nothing. plus its a day's trip for me to get there.
- I would personally forget about that one.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I thought I was going to a super expensive LLMD, about $500 this
recent first visit.
The point I want to make is that there are LLMDs and then are are
LLMDs who really know their stuff. I was going to a LLMD where I
lived before, and he saved my life, but had gotten to point of just
changing ABX. then I moved and found a
local LLMD who has been practicing a lot longer. She did very
thorough testing, and asked a lot of questions. I'm feeling the
difference in treatment already. For example, my original doctor
told me I didnt
have a problem with Babs. This one says that it never goes
completely away, and I'm being treated for it now. The cold sweats
have already stopped completely.
So, not only do I believe, through experience, that a LLMD is
needed for real improvement, but there are differences in Lyme
literate doctors.
Posts: 552 | From New Mexico, USA | Registered: May 2007
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
thanks everyone!!!
yes, I agree there is a difference in drs that CLAIM they are lyme literate, but I want a REAL LLdr. one that really knows the ropes and has a lot of experience. forget the nice guy dr or the one willing to listen if they don't have the goods I don't want them . been there done that.
there are a lot of good responses here. thank you!!!!
I am processing......
anyone else???
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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LisaK
Frequent Contributor (1K+ posts)
Member # 41384
posted
up
-------------------- Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen Posts: 3558 | From Eastern USA | Registered: Jul 2013
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My feeling over the years with doctors has been that none of them are God and a lot is done with trial and error. Another thing I have observed is just because they charge a lot doesn't mean they have some "secret" to getting you better.
I have heard good and bad reports from the best of the best.
One of my friends spent 100,000 dollars up front for one of the top lyme docs, and didn't do a thing. It was so disappointing, but good for me to observe.
I am not better yet either, but I have found it helpful to run a good lyme dr. and more of a holistic dr./nurse practitioner at the same time. Choose your holistic dr. carefully though, as there are a LOT of quacks out there.
I have discovered a holistic dr./practitioner will deal with heavy metals, adrenals, hormones, mold, viruses etc. that most lyme Dr's don't know about or have time for.
Posts: 477 | From Pennsylvania | Registered: Nov 2015
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posted
I agree with Sparkle. Some people seem to do really well with traditional LLMD therapies and others don't. Those who don't either spin in circles or get worse from the therapy. Unfortunately, no one seems to know why this happens just yet (although there are countless theories).
I would certainly skip the $2000 doc.
In my own experience, I found that the LLMD route was terrible. Crazy expensive and it made me worse. After seeing three top LLMDs, I came to realize that they really have no idea what they are doing and the whole thing is a big game of trial and error that ends when you either:
A) -- Get better enough to stop, B) -- Get too sick to continue. C) -- Or run out of money.
In my case, I would say the first year of treatment was helpful, but after that everything the LLMDs suggested made me get incrementally worse.
But still, I have known several people who have gotten their lives back on this track, and a few who are at least stabilized, though they are lifers as far as their need for ABX.
If a person has never tried this approach, I would say at least to give it a try. But if things start going bad, trust your instincts.
Just remember, every negative syx you experience is not a Herx, despite what your LLMD may tell you.
Oh, and if they keep you on this hamster wheel with the dangled carrot of "hope" just remember, at the end s/he gets to keep all the money regardless how much damage the therapy may have caused.
I wish you the best of luck. Like TF above, You may be one of the super responders. I hope you are.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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posted
My son went to Dr. Z in Virginia and he has been cured for over three years. PM me if you want information. I posted about him in success stories. My Son's Story.
-------------------- Son, 26, Dx Lyme 4/10, Babs 8/10 Had serious arthritis, all gone. Currently on Valtrex Daughter, 26,bullseye 7/11 arthritis in knees, cured and off all meds. . Self:Lyme, bart, sxs gone, no longer treating. Posts: 496 | From Washington, DC | Registered: Jul 2010
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