I also think what makes people very suspicious of chronic lyme and it’s extensive treatment is the price these doctors charge just to see them and for the most part it is not covered by insurance. This I don’t understand to be honest. Almost all my docs for MAV were covered by insurance and if they were out of network and I did not reach my deductible, the price of seeing them was a fraction of what many LLMD charge for a consult. Plus, much of the testing is not covered by insurance and this too might cause skeptics. It is so sad in our society that people who are desperate are taken advantage of. I am not saying folks don’t have lyme, but at least cover this work-up and the docs with insurance. It seems the lyme docs that don’t believe in chronic lyme do not charge high prices and take insurance. I live near some major universities and the lyme docs associated with these places take insurance and are not big believers in long term extensive insurance. When I looked at other lyme docs that believe in chronic lyme they wanted almost $1000 for a consult. How do you explain this? It’s just not fair when all we are looking for is answers and wanting to feel better. We deserve this.
Hi Rocker,
I didn’t realise these doctors were charging like that. For me that is another massive red flag. The consult costs a fortune and the testing costs a fortune. ELISA and western blotting is definitely very expensive (I used to order and use them in a lab i worked in 7 years ago) but the consult for a “Lyme literate” physician costing a fortune sets off my BS detector. Totally unnecessary and sure sounds like the unwell being exploited.
I really have tried to let this thread go–but on this point I must say something. If a LLMD is charging you a huge fee for a consult then you should be very concerned with the situation. Just like ANY situation where someone is feeling vulnerable–if you are trying to find treatment or answers related to Lyme disease, and you have a hard time finding a Dr. who will treat–SOMEONE WHO IS NOT ON THE UP AND UP WILL COME TO FILL THE NICHE WITH FRAUD.
There are very real signs and symptoms that point to possible late stage-untreated Lyme disease (note, I did not say chronic Lyme here). My general practitioner agreed that my symptoms were in line with many of the symptoms that fit that possible diagnosis and would have been willing to treat with a doxy prescription for up to 2 weeks. However, true scientific/medical research DOES show that late stage Lyme disease is often not eradicated with a short term course of antibiotics.
I was REFERRED to an LLMD for more comprehensive testing and long term treatment because of the controversial issues surrounding longer term antibiotic treatment in the US. My GP was not willing to provide a long term prescription due to the red flag that insurance providers place on GP’s that do this too often. The red tape created by the insurance company is too cumbersome for small practices to encumber. An LLMD who does not accept insurance for primary payment due to these controversies SHOULD PROVIDE ALL PAPERWORK FOR PERSONAL REIMBURSEMENT THROUGH YOUR PROVIDER. Also, the cost for ANY NORMAL DOCTOR’S CONSULTATION, minus external testing SHOULD NOT EXCEED $150.00 US. If an LLMD will not provide documentation or charges more than $200 (the top charge allowed by insurance providers for a consult) simply to meet with you–RUN.
Also–an LLMD should be board certified and licensed–not a chiropractor or an RN or PA. If you are ashamed to discuss your visits with your LLMD with your general practitioner or other doctors then something is wrong in your equation.
We all know that mis-diagnoses and ongoing symptoms without treatment are frustrating and life changing. No-one gets that better than most of us. But we also are trying to keep each other as safe as possible–and there ARE fraudulent people out there who will take advantage of your fear and frustration. Just be safe.
Yours,
D
— Begin quote from “leannefr”
Maybe anti- lyme is the wrong way to describe it. But I find it interesting that Lisa posts she is going to start lyme treatment and that if people aren’t getting better then they may want to consider lyme disease as a potential cause for their symptoms. And wow, it starts this huge 80 some post debate. People seem to have very strong feelings about this topic. I don’t know what the truth is, whether there is or isn’t “chronic lyme” but I am willing to keep an open mind about and know of several people in my own community who have been or have a family member who has been severely affected by the disease.
Ultimately I feel that when Lisa wrote her post her heart was in the right place. I know she hasn’t taken this lightly and has obviously done her own extensive research before going down this path. But apparently this topic opened up a big can of worms 
And when I wrote my posts I was just sharing my own personal experience with the disease and that based on my experience I would suspect that the prevalence in humans is much higher than it is thought to be. And also that we use much hier doses in vet med which upon reading more about the disease in humans are similar doses to what the controversial ILADS recommends vs what the cdc ends. I find this all very interesting and hope as we learn more about the disease there won’t be so much controversy and people with lyme will get appropriately treated (whatever that may be).
— End quote
j
I’m going to jump in here with my two cents.
One - the debate is not about Lisa it is about Lyme.
Two - debate is a GOOD thing. It’s how we learn and how we sift through to what is plausible, likely and backed by evidence.
Three - we all care very much for Lisa and those of us who have been around for a while know how much she has suffered and how confounding and intractable her condition has been. No-one doubts for a moment her sincerity or good intentions. Repeat point one, the debate is not about Lisa.
Four - sharing personal experience is great and it gives us all insight, avenues to consider exploring with our doctors but most realistically, support for each other. But in terms of diagnosis, personal experience amounts to anecdote which is a very shaky foundation on which to base or question our own diagnosis or (potentially expensive and/or inappropriate) treatment plan. We need to keep things in perspective.
Vic
Thank you for the kind words about me. and, yes, this isn’t about me. This is about US getting well whatever one’s path may be. Vic - you are correct!
should anyone want to learn more about Lyme Disease and the reasons why lyme doctors charge what they do, I am attaching a documentary, You can then draw your own decisions based on your own research which, of course, goes way beyond watching this one documentary.
hulu.com/watch/268761
All I know is that I was completely healthy, except for 1 migraine per year. and, I now have rocking so severe that I must ambulate with a walker and even that is nearly impossible, severe swimmy head, brain zaps, floaters, crushing fatigue and the list goes on. IMO, such symptoms are way different from migraine pain or episodic vertigo. to go from 1 migraine (pain episode) per year to THIS, something beyond migraine is going on (for me). and testing proved it for me. Scott - with all due respect, please try to put yourself in the shoes of someone suffering 24/7 and bedridden. if all doctors denied the existence of chronic lyme, such sufferers would remain sick their entire lives. thank goodness for doctors that are courageous enough to treat chronic lyme. at this point, I would likely be diagnosed with migraine associated dizziness, possibly MdDS, chronic fatigue, and beginnings of fibromyalgia, and who knows what else. certainly the diagnosis of Lyme makes much more sense than going from having no symptoms/no disorders to suddenly developing a laundry list of disorders.
and, in response to the statements about long-term antibiotic use. To be blunt, this stinks. I never intended in a million years to have to take long-term antibiotics. I also never thought that I would be bedridden one day and very ill. I wish there was a good alternative. but, sadly, if I intend on getting my life back, I do not have a choice.
as I said before, Lyme is an epidemic. no one is immune to Lyme Disease. if you don’t believe me, feel free to do your own research.
A top Lyme expert states, “In the fullness of time, the mainstream handling of chronic Lyme disease will be viewed as one of the most shameful episodes in the history of medicine because elements of academic medicine, elements of government and virtually the entire insurance industry have colluded to deny a disease. This has resulted in needless suffering of many individuals who deteriorate and sometimes die for lack of timely application of treatment or denial of treatment beyond some arbitrary duration.” After watching the documentary and researching, the above quote will make much more sense.
also meant to add if anyone ever has any questions feel free to message me so I don’t load the forum with lyme posts.
Lisa – all I ask of you is to please put this into context for others (it would be nice if you’d do that on FB for the community there for example). It pushes people’s panic buttons otherwise when you discuss this from only one point of view which is not supported by the medical community. There is no credible evidence that this is an epidemic. It is endemic. You should know very well from all of your reading now that there is an element of junk science and cranks to the Lyme story and therefore people should be CAUTIOUS. The ridiculous consultation pricing is one new one that stands out.
You are about to be treated I assume and so with that I wish you good luck and hope you have found the silver bullet. I look forward to hearing how the treatment goes.
— Begin quote from ____
http://www.hulu.com/watch/268761
— End quote
Only works in the US. 
As much as we all hate to think about Lyme it does exist and it is scary. We can’t just bury our head in the sand about it bc we don’t like it. If traditional migraine treatments don’t work and you are sick for years it only makes sense to look into other possibilities.
Totally agree – but also keeping our heads screwed on straight in the process. There’s too much crap out there for us not to practice this.
Wanted to share that a family member of mine was diagnosed with chronic Lyme (not sure that is the correct terminology but was told she had late stage and that she had it a very long time). She spent the last 2 1/2 years on IV antibiotics and chest port therapy as well as natural alternatives and diet. She has been very ill through the treatment but she has improved. She went off the antibiotics a few months ago as it was very hard on her body as you can imagine and she has been in a steady down slide since then. She has to go back on them.
It’s a long road recovering but she said she knows she was on the right path and she has been so much sicker since stopping the treatments. She also tested negative according to CDC guidelines but when she did the more intensive testing (Igenex) and had another blood culture test done she showed up positive for multiple bands indicative for Lyme. I believe she tested positive for co-infections as well. I definitely agree that it is well worth at least getting tested if you have a lot of the symptoms but that is up to each person to decide for themselves.
For me, I have chronic basilar migraines but those don’t account for my other unrelated symptoms like joint pain and popping, repeated bouts of costochrondritis, unexplained fevers, muscle spasms (severe enough dr. put me on muscle relaxers) digestive issues, hair falling out etc. I understand the controversy, I have been reading a lot about it and talking with my family member too and have learned a lot. I will be seeing a Lyme specialist in April. Hoping I don’t test positive but after 10 years of this, have to at least look into it since I haven’t gotten enough relief with any migraine treatments so far.
Thanks, Shelly and Elisha. I’ll keep you posted
i noticed that my post was not bumped up yesterday, but then realized that it was placed in the “Other Illnesses and Conditions” Section, so I guess that explains it not getting bumped up as i was so perplexed. and, today, I’m bumped up again, in General Discussion. now my head is really spinning lol
But, this has been a blessing as I was able to look through the “Other Illnesses and conditions” section (btw - thanks Scott for organizing everything into this section. I love how this forum is so well organized. such great work. organization is vital especially for a dizzy sufferer, that’s for sure), and stumbled upon such a positive story about someone whose MAV symptoms resolved after Lyme treatment. If anyone would like to read: http://mvertigo.cloudapp.net/t/i-was-diagnosed-with-lyme-disease/3639. such a hopeful story that i know cheered me up and I hope it does the same for others.
I didn’t realise that person’s story was in the archive! Lisa, do you want me to track her down and see if she can elaborate on this? I’d like to know her complete history. How long do they think she had Lyme etc. Looks like an interesting case study.
When posts move to the top of the third page I tend to move them and keep the GD discussion area fresh but this one was on fire again so brought it back to GD. Looks like it was a good thing because you found the other post. You should run a full search of the forum for any other Lyme stories.
Thanks, Scott. She, thankfully, still checks her PMs. I messaged her today and she got back to me. if you have any trouble contacting her please let me know, or I could ask her to tell her story. whatever is best for you. she gave me her personal email, so I will be emailing her tonight. I can ask her whatever you like to do for the forum
Thanks Lisa,
Yes please. If she wouldn’t mind telling us her story, I’d appreciate it. I’d like to know if there’s a long migraine history there as well as Lyme – family members who might have migraine etc. What region does she live in for example.
Thanks
Lisa,
Actually, if you read ‘Beating Lyme’ by Constance A Bean, it clearly states that Dr Michael G Stewart, the chief of ENT medicine and t NY Presbyterian/Weill Cornell Hospital says that untreated Lyme can lead to nerve damage, often involving the 8th cranial nerve, the same nerve affected by vestibular neuronitis. VN = dizziness.
In the past few months I have met A LOT of people that were diagnosed with MAV/MdDs/Labs/VN etc. that are now Lyme positive. I guess Lyme is the last thing that GPs are looking for, so we can sometimes be misdiagnosed. Lyme can mimic over 320 different illnesses and diseases, but I am sure you already know all of this. There are 4 of Dr S’s patients here in the UK that are now Lyme + as well !! One of which has NEVER left the UK!!
I think it would be wise (and I am sure I do not speak for everyone) if anyone reading this has been diagnosed with MAV and have tried 12 meds (like myself) and the MAV diet with no joy… it is time to move on and try and find the ‘root’ of the dizziness/vertigo. Way too many people being diagnosed with MAV and spending years not really knowing.
I was bitten in 2004. In 2005 I started having weird health issues (pleurisy etc, then ‘MAV’) I am being Lyme tested soon as well. Thanks for all of your info x
dizzychick,
i haven’t yet read that book. I will look into it. Thanks for that info.
I wish you all the best on your testing. I am here should you have any questions about testing. and, hope that whatever the results yield, that things get better for you.
I’m sorry for what you’ve been through. I hope that we can all get better in time.
Can someone tell me why a “Lyme-literate” physician charges $1000 for a consult in the US? What the hell is that all about?
There are a few purple elephants standing in the room with us on this that needs to be addressed. Thanks
Too many dodgy, underhanded things going on in the US gov’t. Long LONG story, but basically the moron that wrote the Lyme ‘bible’ in the USA has his hands in the cookie jar so to speak. He owns stock in the (failed) company that produces Lyme immunizations and drugs. They don’t work, at all. LLMDs are being sued all the time here in the UK and USA. A lot of Lyme patients get worse during treatment. They ‘herx’ - which is the body eliminating toxins, and sometimes die in the process. Treating Lyme is very 007. The UK gov’t has finally admitted that Lyme was biological warfare. They should know, they sent enough $$$$ to the US in the late 1940’s ! US still denies it, like most things. All very interesting Scott. If you researched it, believe me you would be astounded!
Scott - have you watched, “Under Our Skin”? I ask that you please watch it. that explains way better than I ever could, and then feel free to draw your own conclusions. and, of course, research way beyond watching one documentary. There is so m uch out there to research and to get answers to your questions.
Lisa-
I’m sorry to hear of your condition and certainly hope that the treatment that you are going to undergo is the answer to your long suffering.
When I first went to my neurotologist he immediately ordered a panel of blood tests that he called his “dizzy profiles”. It included Lyme and Syphilis and many others that I thought were goofy because I was pretty sure I didn’t have them. I’m glad that he did the tests. They weren’t sent to the local lab…somewhere out west and the insurance billing was a couple thousand dollars. Again…I am glad he did it. I don’t believe I have some hidden form of the disease but I can certainly see where you giving it a shot in your present condition is reasonable.
Tonight I watched the movie “Under Our Skin” on Netflix and found it interesting. I’m not a scientist or physician but I can certainly see the conflict of interest the members on the board that decided the regiment for Lyme had. That is a major issue. The politics of big pharma, the government, insurance companies and money is no big stretch of any imagination in this country. My birthmom has a friend that was very ill for quite some time (lives in NJ) and found a LLMD when others didn’t help her. She did the long term antibiotics and got her life back. I never discussed it with this woman but perhaps now I will ask her exactly what her story was.
There is quite a similar debate happening with MS and Dr. Zamboni’s theory of CCSVI treatment. I don’t think people look into these things until there is a need. (ie You don’t notice the ads in the newspaper for washers and dryers, etc until you need a set).
I look forward to future information regarding this disease. In regards to dogs and humans I think what really sticks out in my mind is the fact that there would be no placebo effect for dogs. No emotional or subjective reporting-no way to psychologically know you were receiving something that was supposed to help/hurt, etc. But, here’s the other thing…just because a person is paranoid doesn’t mean they aren’t being followed.
Please keep us abreast of your progress