I know this might seem bad to say here, but I am having doubts about all of this. Help me understand.
Please don't take this the wrong way, but I'm just feeling broken and am a skeptical person. So naturally, I will question this.
Yes, I feel horrible most of the time, but if LLMDs were so great and helpful, why do they charge an arm and a leg to help?
Part of me wonders if they're just in it for the money. A bunch of people with no answers and feeling desperate and sick. Vulnerable and willing to pay anything to feel better.
I watched "Under Our Skin" and it seemed like fear mongering and can't believe people are using it as a way to understand this stuff.
Maybe I'm just sad because I know it will break my family and I if I get treatment, but it just seems unfair. If they wanted to help so badly, why charge $1,000 for one office visit.
Why do some take insurance, but others do not?
This is just me venting and I will still go to my LLMD, but I'm just doubting my diagnosis and having a hard time.
Sorry and thanks for listening....
Posted by Lymetoo (Member # 743) on :
I think we all had doubts ...
Most LLMD's spend an hour or MORE on the first appointment. If you figure what you spend for a "regular" MD for 10 minutes, it levels out a bit.
Also, this is an expert you are seeing. No one else knows HOW to treat Lyme, nor will they stick their necks out in order to treat it.
---moving to general support---
Posted by SLH516 (Member # 48060) on :
Lyme is such a high-maintenance disease that Lyme docs aren't ultimately making as much as it seems they might be making.
Most doctors don't charge for communication outside of office appointments (with you directly, with pharmacies, etc.), yet they're still providing a service and have overhead to cover
(such as rent, staff salaries, equipment purchase/maintenance, general office expenses, malpractice insurance, various licenses (business, DEA, etc.) and certifications, professional services, etc.).
Most doctors don't risk losing their licenses for providing legitimate care to their patients. That's pretty huge.
The blame here lies with the insurance companies, not the doctors. And insurance coverage is part of what makes other doctors services seem so much less expensive in the first place.
If we had to pay cash for all of our medical care, we'd probably see that LLMDs aren't as out of line as we think they are.
I hear you, though -- I can't afford to go to a LLMD, so I'm going to do BVT on my own and hope I can pull it off without their advice (I'm pretty freaked out, tbh).
If that doesn't work, I'm going to be one of the people you see on 20/20 who fell through the cracks and died because insurance companies refused to pay for my treatment.
Posted by AndyR (Member # 46432) on :
I like to think of myself as pretty skeptical too and I most definitely have my doubts about Lyme disease, as should everyone.
The first LLMD I went to charged me an arm and a leg and really was of no help and definitely was just trying to get money out of me. The new one I'm seeing is much cheaper and I'm getting the feeling that she actually cares about my well-being.
As with all doctors, you should not trust them absolutely on everything because they're only human. If you don't like one, find another. There are good and caring doctors out there.
The problem with Lyme disease is its still not fully understood in the medical community. This is why, even on here, you'll find countless varying opinions on the same topics.
Lastly, I agree with you about "Under Our Skin" being a little too fear mongering and conspiracy theory for my liking. I still found the documentary interesting from the perspective of hearing others accounts of what they've been through.
All I can say is do your research and be your own advocate, because you know your body better than anyone.
Posted by Keebler (Member # 12673) on :
- Try to turn off emotions when watching the film. See it for what they are sharing. For the information. It's solid.
I've lived "Under our skin" - after being unable to drive, work or go out for over 20 years, unable to shower most days or make a phone call . . . believe me, there is no fear mongering in that documentary.
I've been to dozens of doctors who dismissed falls, seizures, inability to walk, talk, etc.
What's the fear mongering in telling people that is real, it happened to me, to others. Those in the film are not acting, they are sharing the realities of their lives. The LLMDs interviewed, too, bravely took part in this because they know this is important information.
It may be hard for some who are not as ill as others to see those in the film and, therefore, must think "oh, that is just exaggerating" (fear mongering).
Every statement that has emotion as an element is as factual as the sun rising each morning. Every situation is real. And that's been most of my life for decades.
And lyme can be fatal. People need to know this fact. If left untreated, it and other tick borne infections can be fatal. That make raise some fear but it's not the job of facts to lie to make people feel better.
Most who get lyme / TBD do live, and many even with inadequate treatment but it can be a lifetime of misery. Get the facts, get the best care possible. Know the options.
Facts are there to help us.
Believe me, the reality shared there is all too real for those who have not gotten care required. That should not raise fear but prompt action. Rather than fear, reach for courage and respect of the task at hand.
The successes shown, too, and in the follow-up "Emergence" are also very real.
For patients with tick-borne diseases, the path to health can be confounding. Combining integrative and conventional approaches may be the best way forward. -
[ 09-09-2016, 06:06 PM: Message edited by: Keebler ]
Posted by momindeep (Member # 7618) on :
It is a horrendous situation...but compared to when I was first thrown into this situation the situation has improved in some areas.
LLMDs have become way more educated for one thing...another positive is you can treat yourself if forced to, with some seriously good information that was not hardly available not that long ago.
It IS expensive...no if ands or buts about it...many us have spent tens of thousands and those of us with multiple family members infected...perhaps hundreds of thousands.
I don't mourn the money spent...I am thankful we were able to swing it somehow.
Some people respond to treatments quite quickly, like my husband and some take years like my daughter.
My prayer for you is that you can be okay with money spent at a LLMD and that you respond quickly so the treatment isn't astronomical.
As a parent of a child who suffered with lyme...I would of given my LIFE for her to be better and I am sure your folks feel the same way.
Posted by Keebler (Member # 12673) on :
- While it is best if anyway possible to seek and find the most knowledgeable ILADS educated LLMD available - especially for proper assessment of the full range of tick borne diseases.
Yet, I know (I do) that is not possible for all. But don't just give up too soon. I do not suggest going into debt yet if there are things one can sell and do without, consider life more valuable than some items.
Some may think they can't see a LLMD and go to just one other way. There are various other things to consider.
- When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways. Proper ASSESSMENT of not just lyme but coinfectoins is vital. Someone trained by ILADS is best to assess.
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
For those considering complementary support methods / or other avenues entirely:
Herbal Safety considerations & reference books; etc.
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . .
BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)
Links here to two major sources: Buhner, & Zhang. Be sure to get their books.
RIFE Machine - Reference LINKS -
Posted by WPinVA (Member # 33581) on :
They don't take insurance because insurance won't cover treatment for chronic Lyme disease. Insurance companies follow the IDSA guidelines because it costs them less to do so.
There are a lot of LLMDs. As with any other group of professionals, some are probably in it for the wrong reasons, and some (most, I would like to think) are wonderful people trying their best to get their patients well.
So... contact your local support group to get recommendations on LLMDs. They will know the good ones.
Put that skepticism to good work! It already got you past an ID doctor and to an LLMD so that's good. Read all you can, ask questions, bring ideas to your doctor, etc.
Posted by bluelyme (Member # 47170) on :
Get a microscope ,you cant argue with seeing the spirochetes...ok there is a lot of snake oil ..i just checked the price for homeopathy and this guy is 600 for 1.5 hrs and it doesnt include the tainted water formulas a remedys ..
.i got taken by a guy who did a great parasite test then charges thousand or 2 for the remedy. Which may or may not work...it didnt work the first round so he said buy another
...he is seeing lyme in darkfield but he is calling it pleomorohic bacteria and not telling his patients that itbis likely borellia ..because he doeant want to diagnose ..etcetc..
Posted by TF (Member # 14183) on :
To sardavis and AndyR:
"Under Our Skin" is a movie purposely showing the WORST cases of lyme disease in order to educate the public on how bad this disease can be.
No sense showing cases like mine where there was absolutely nothing to see. People I knew were always telling me how great I looked, especially because I got thin (from continual nausea) which is the American standard of beauty.
'Under Our Skin" was trying to combat the message given out by U.S. doctors and the IDSA that lyme is RARE and EASILY cured, so no big deal!!!
Once you realize the misinformation they were trying to combat, you will understand why they showed the worst cases and interviewed the people that took so long to get diagnosed.
I went from doctor to doctor for 10 LONG years before I got a diagnosis. I was treated like a mental patient by all the docs I saw because my routine blood tests and other tests were all normal.
So, I LIKE "Under Our Skin" because it told the story of my long journey trying to get taken seriously and get a diagnosis.
There are not too many people here who feel like you about that movie. The folks here are suffering so terribly, they are glad to get the validation that movie provided.
It is showing the worst cases for a reason and that is not to scare people; it is to combat the pervasive misinformation campaign being conducted by the IDSA for the last 30 years in the U.S.
Their misinformation has traveled over the entire world and is now hampering and totally preventing lyme diagnosis in many, many countries. Ask folks in Great Britain, France, Australia, Israel and many other countries.
Thanks in part to "Under Our Skin," things have gotten a little better in the U.S. for those who contract lyme disease. People find that out and travel here from all the countries of the world.
So, we here are grateful for "Under Our Skin." Hopefully, once you learn a little more, your view of the movie will change.
Posted by sardavis (Member # 48690) on :
Thanks for your responses. I supposed I'm just scared and in denial.
If this is real, I do not have the means to treat it and will just continue to suffer.
I have an appt. with a LLMD next week, but I don't know what to expect and it's hard for me to come up with the money for that appt, let alone a bunch more.
Thanks for listening to me vent.
Posted by Keebler (Member # 12673) on :
(with thanks to Melanie Reber for starting this) -
Posted by Keebler (Member # 12673) on :
- This will all work out. Just take care of yourself and take it one breath at a time as you prioritize the tasks at hand. Be sure to enjoy - or at least appreciate BEAUTY in various forms each day. -
Posted by Catgirl (Member # 31149) on :
Well said OptiMistick!
Sardavis, if you want an easy way to work on lyme, get a FIR sauna. Lyme hates heat and far infra red saunas penetrate the body wonderfully.
The bonus of it is that it also detoxes toxins too! There are inexpensive portable ones that people use too. About $150. If you do a search on here you will find more info.
You might also check into rife machines. Hang in there, you can do it!
Posted by garnet10 (Member # 48181) on :
quote:Originally posted by sardavis: I know this might seem bad to say here, but I am having doubts about all of this. Help me understand.
Please don't take this the wrong way, but I'm just feeling broken and am a skeptical person. So naturally, I will question this.
Yes, I feel horrible most of the time, but if LLMDs were so great and helpful, why do they charge an arm and a leg to help?
Part of me wonders if they're just in it for the money. A bunch of people with no answers and feeling desperate and sick. Vulnerable and willing to pay anything to feel better.
I watched "Under Our Skin" and it seemed like fear mongering and can't believe people are using it as a way to understand this stuff.
Maybe I'm just sad because I know it will break my family and I if I get treatment, but it just seems unfair. If they wanted to help so badly, why charge $1,000 for one office visit.
Why do some take insurance, but others do not?
This is just me venting and I will still go to my LLMD, but I'm just doubting my diagnosis and having a hard time.
Sorry and thanks for listening....
Oh, I hear you!
I am left hoping that I really do have Lyme, but since it is one of the few things left I haven't treated for, I'm going for it.
Only tested positive with IgeneX IgM and a markedly elevated C4A level;
but an LLMD I saw said he felt everyone in a Lyme endemic region will likely have been exposed--it doesn't mean this is the reason for their symptoms.
I share your feelings about the movie as well.
There was also a statement at the end of the film that a pathologist working with Lyme and the brain had developed dementia and no longer remembered his work, then I saw online that he gave a talk about his work just a couple of months ago.???
And yes, some of the LLMD's charge exorbitant fees.
We found someone more reasonable, but the cost of travelling and staying overnight/eating out/renting a car, etc. racks up cost as well.
I completely understand not taking insurance--this places a huge limit on how much time and effort can be spent on your case,
and way too much oversight; physicians are terrified of losing their license/livelihood/career for not practicing within the "medical standard of care".
I thought I was the only person walking around who found it hard to believe they had Lyme!
Considering the amount of dollars I've invested in a Lyme diagnosis and treatment, I really do hope I have Lyme!
[ 09-13-2016, 01:50 PM: Message edited by: garnet10 ]
Posted by LisaK (Member # 41384) on :
I still have doubts after 20 yeasrs of this stuff.... but, I have a part of me that says it is 100% there and real.... I debate myself sometimes about it all
I know now that I have many other issues too that have similar symptoms.
and you are right about the drs!!! I hung up on some and said they didn't care if I died at that time and they didn't even bat and eye.
I think lyme is real.. .but I think "they" know much more than they will say or tell drs.
I dn't think under our skin is instilling fear. that is becasue I was like all of those people in that movie. I was that sick in that many ways and was scared to death that I would die like that, all shaky and messed up and etc. so that movei helped me so much because it validated something that I thought was MAYBE in my head for so long! I have watched it many times and each time I cry over my losses of me.
I hopeyou find answers. it's not easy. everyone is different for sure. just don't give up.
Posted by Robin123 (Member # 9197) on :
garnet10, you say you tested positive on an IGeneX IgM - if you did, that's a positive result. You can discuss more here if you want, in terms of the specific test results you got.
Posted by garnet10 (Member # 48181) on :
quote:Originally posted by Robin123: garnet10, you say you tested positive on an IGeneX IgM - if you did, that's a positive result. You can discuss more here if you want, in terms of the specific test results you got.
Robin123, my LLMD's comment that he believes everyone in a Lyme-endemic region is likely infected,
(and therefore may have a positive titer) is chilling to me.
I truly hope my symptoms are from Lyme, so that they can be treated.
I've been sick for at least 14 years, so I am hopeful recovery is possible.
Posted by TF (Member # 14183) on :
garnet, if you were positive on the lyme Western Blot IgM from Igenex, there is no doubt that you have lyme disease.
There is no other way to get a positive like that.
You really need to get to a very good lyme specialist--meaning a doctor whose practice is just lyme disease or at least 50% lyme disease. That gives the doc expertise as he sees so many lyme patients daily.
Forget doctors who treat everything. This disease is too complex for that. If you have a foot problem, you go to a foot doctor, a cancer problem, you go to a cancer doctor.
Just know that there are lots of lyme specialists out there that are doing a lousy job or just a fair job. If you want to have a good chance of getting rid of this, go to the one I recommend or another lyme specialist universally considered top notch.
There are very few of them, so the list of names is quite short.
I got cured even though I went undiagnosed for at least 10 years. But, it didn't happen until I went to a doc whose practice was 100% lyme disease, he didn't take insurance, and he followed the Burrascano protocol.
The 2 so-called lyme docs I went to prior to him (recommended by a lyme support group leader) were doctors who had regular medical practices (internists) treating adults for everything, and they both took insurance.
I hope you can see that I am the voice of experience here. I have been helping folks find good lyme docs and get rid of their disease for at least 13 years. I have at least 5 personal friends who had long-standing undiagnosed lyme disease and they are all now well, not requiring any treatment of any kind.
And, I have talked to thousands of lyme patients. I know what doesn't work. You really need to see a specialist.
Posted by Neko (Member # 46592) on :
I get real down when I think of the cost. It is increasingly common for many doctors to not deal with insurance. My LLMD does not take insurance, I can however, submit it to my own insurance.
Of course, my insurance views my LLMD as an out of network provider, and my deductible being $5,000...I have to spend that before they kick in. But I can only count office visit fees, some of the stuff I have done cannot be submitted (my UVBI treatment and other alternative medicine). So really, it's the ****ty insurance companies, not necessarily the doctors.
I do deduct all my prescription costs and office visits off my taxes, because I usually spend over a certain percent of my income on it.
As for Lyme, I do think it's a huge problem. I also think it mimics a lot of other conditions, so without proper testing you run the risk of treating people for Lyme when their fibromyalgia and CFS might have a different cause.
For me, I had three positive bands and over 30 Lyme systems, esp neurological ones. The risk of not treating on the off chance I didn't have Lyme was not worth it. I also had a bulls eye rash, so I know I've had Lyme, but without proper tests I can't definitively prove I STILL had it.
No I don't think Lyme was my only problem, but it may have been the straw that broke the camels back.