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Lyme disease questions help please
I have been contacted by a few people on medhelp stating that I share many of the same symptoms as them during their late stage lyme disease. I am a 22 year old male and have been experiencing bad chest tightness and dyspnea for a while now. It began very minor and then grew worse and worse over the past few years. I have been to many doctors but I feel as though someone is missing something. I also went to a psychologist and nothing was found that would cause these symptoms. I have seen pulmanology, cardiology, GI, ENT, Neuro, Internal. And still no diagnosis. I have been put on many medications but nothing is helping. Only thing found was high liver enzymes but I was told it was because I was heavy 250 ( I lost 30 lbs thought im now 220) My father was diagnosed with myasthenia Gravis but I do not have it from what the blood test and EMG showed. I also now am suffering from extremely low vitamin D (it was 2 on the blood tests) and was put on a prescription for it but its not raising it at all. I also get this quick burning rush of pain near my diaphragm... it could be my liver but im not sure. I have even been out to the mayo clinic but they screwed everything up so bad while i was their it was a giant waste of time. Any info would be greatly appreciated.
Thank you,
Justen
Thank you,
Justen
That's great news! I hope your appt. goes well.
Ask your new doctor's office if they have IGeneX test kits on hand. If not, call Igenex and order one as soon as you can. According to CDC rules, a doctor must authorize the tests by signing the form. They ship the kits priority mail so it can take 2-3 days to get there. You have to pay up front (most just use a credit card) and then submit it to your insurance company for reimbursement. I got about 70% back because it was ordered by my primary care doc. If an out of network doc (as my LLMD is) had ordered them, I would have gotten much less back. If your new doc is out of network, you can find a sympathetic doctor in your insurance network who will work with you on this, it can simplify things and reduce the cost.
One advantage to seeing the doc before ordering blood tests is the doc can pick and choose what tests to order based on your symptoms. I was afraid of missing something and ordered the full Lyme panel and full coinfection panel. I don't regret that, as my odds of an asymptomatic infection getting missed are reduced. I ordered them before seeing the LLMD in order to speed up the diagnostic process, but since your appointment is so soon, it won't make much difference for you in timing.
For the first month, I had this internal conflict in my head, saying "It shouldn't be like this! I have good insurance. Why do I have to pay for this?". I still feel that way, but I haven't let it stop me from doing what I need to do to get well. Living in a state where Lyme is uncommon, I was able to convince my insurance company that 12 doctors and a hospitalization proved that I couldn't find someone around here to diagnose and treat me. They actually approved my out of network referral request, which I hear is rare. I still have to pay the difference between what my doc charges and what insurance reimburses, but I have accepted that as the price of getting my life back.
It is a life altering experience, first to have this devastating disease, and then to learn about the war in the medical and insurance industries over definition, diagnosis, and treatment. I still cannot comprehend that this has happened in America.
Ask your new doctor's office if they have IGeneX test kits on hand. If not, call Igenex and order one as soon as you can. According to CDC rules, a doctor must authorize the tests by signing the form. They ship the kits priority mail so it can take 2-3 days to get there. You have to pay up front (most just use a credit card) and then submit it to your insurance company for reimbursement. I got about 70% back because it was ordered by my primary care doc. If an out of network doc (as my LLMD is) had ordered them, I would have gotten much less back. If your new doc is out of network, you can find a sympathetic doctor in your insurance network who will work with you on this, it can simplify things and reduce the cost.
One advantage to seeing the doc before ordering blood tests is the doc can pick and choose what tests to order based on your symptoms. I was afraid of missing something and ordered the full Lyme panel and full coinfection panel. I don't regret that, as my odds of an asymptomatic infection getting missed are reduced. I ordered them before seeing the LLMD in order to speed up the diagnostic process, but since your appointment is so soon, it won't make much difference for you in timing.
For the first month, I had this internal conflict in my head, saying "It shouldn't be like this! I have good insurance. Why do I have to pay for this?". I still feel that way, but I haven't let it stop me from doing what I need to do to get well. Living in a state where Lyme is uncommon, I was able to convince my insurance company that 12 doctors and a hospitalization proved that I couldn't find someone around here to diagnose and treat me. They actually approved my out of network referral request, which I hear is rare. I still have to pay the difference between what my doc charges and what insurance reimburses, but I have accepted that as the price of getting my life back.
It is a life altering experience, first to have this devastating disease, and then to learn about the war in the medical and insurance industries over definition, diagnosis, and treatment. I still cannot comprehend that this has happened in America.
Thanks everyone for the info and blamom thank you for the post. I have officially found a LLMD that I am very comfortable with and everyone says how he is a great listener and is truly a doctor who cares. Now I gotta figure out how the process goes with this Igenex... I was told I order it myself? Wish me luck I got an fast appointment with him... (monday) due to a majority of my symptoms having to do with my nervous system and "lyme brain". I just hope someone is able to reach some type of diagnosis because I have gone on for way too many years with no answers at all. Thank you again ricobord for opening my eyes to the possibility of lyme disease and for all the information... Also ty to Jackiecalifornia for the additional guidance. I will be keeping you all informed as to what my LLMD says. I will tty all soon ^_^
Justen, not sure where you are in the philly area, but if your closer to the northern end I can suggest a good doctor for you. I am in NE PA and my Dr. is in Bangor, PA. If your interested contact me. This doctor is not an LLMD but because of the high tick infestation in my area, he is very well informed. My email, ***@****
I hear you. Lyme is the wild wild west of medicine, and it does feel rather creepy to be going off the grid, but once you find a doc who makes sense to you, it gets better.
The docs often don't take insurance, for a number of reasons, I think. One is to avoid hassling with insurance companies ... the insurance people point to the supposed standard of care set by the IDSA ('two weeks of meds and you're cured! and if you've still got symptoms, it's your immune system overreacting, so tough luck and have a good life!). Insurance companies have reason not to pay for quack treatments, but unfortunately the quacks here appear to me to be IDSA [Infectious Disease Socy of America], home of Lyme deniers. I can understand by the ins cos react that way, and it just means life is a little harder for us the patients.
Also docs don't want to have to pay an army of billing clerks for their offices, and that makes sense too, because it just runs up the overhead for them, and makes them have to raise their rates. My LLMD practiced solo, with two office helper people, who may or may not have been RNs. Small office, low overhead. That helps keep cost down. I paid the bill, and then claimed thru my ins company ... and the ins co paid up at their 'out of network' rate.
Yes, it's expensive, but being sick forever is even more expensive in every way possible.
Having an old doc may not be the worst thing possible; what matters is his/her understanding of Lyme and its possible coinfections. Dr Sherr's office (if she still keeps one) may be able to refer you.
A number of posters here travel far longer than 3 hours to find a good doc, it's just part of the deal. And as for consulting an ID doc, good luck -- they are usually ground zero in denying Lyme as anything more serious than the sniffles.
Let us know how you do, okay? Best wishes!
The docs often don't take insurance, for a number of reasons, I think. One is to avoid hassling with insurance companies ... the insurance people point to the supposed standard of care set by the IDSA ('two weeks of meds and you're cured! and if you've still got symptoms, it's your immune system overreacting, so tough luck and have a good life!). Insurance companies have reason not to pay for quack treatments, but unfortunately the quacks here appear to me to be IDSA [Infectious Disease Socy of America], home of Lyme deniers. I can understand by the ins cos react that way, and it just means life is a little harder for us the patients.
Also docs don't want to have to pay an army of billing clerks for their offices, and that makes sense too, because it just runs up the overhead for them, and makes them have to raise their rates. My LLMD practiced solo, with two office helper people, who may or may not have been RNs. Small office, low overhead. That helps keep cost down. I paid the bill, and then claimed thru my ins company ... and the ins co paid up at their 'out of network' rate.
Yes, it's expensive, but being sick forever is even more expensive in every way possible.
Having an old doc may not be the worst thing possible; what matters is his/her understanding of Lyme and its possible coinfections. Dr Sherr's office (if she still keeps one) may be able to refer you.
A number of posters here travel far longer than 3 hours to find a good doc, it's just part of the deal. And as for consulting an ID doc, good luck -- they are usually ground zero in denying Lyme as anything more serious than the sniffles.
Let us know how you do, okay? Best wishes!
I am doing a lot of research on the LLMD doctors and I have to say the information I have gathered is less then comforting. It feels like im searching for a drug dealer with all the hush hush info and the back door deals... Lots not even accepting insurance and charging so much money for treatments and testing. Also I cant even seem to find anyone under the age of 75 around my general area. I guess I will have to drive at least 3 hours to a LLMD doctor or else settle for an infectious disease doctor.
A couple other places to look for an LLMD referral...
www.turnthecorner.org
www.lymediseaseassociation.org
Also, I recently found a write up from a Lyme Patients conference held in San Francisco in January. It gets into some medical jargon that I don't understand, but it does explain some of the many ways that Lyme can royally mess up your body. It also explains some ways to help heal the damage via diet and supplements.
http://betterhealthguy.com/joomla/blog/258-lymediseaseorg-conference
www.turnthecorner.org
www.lymediseaseassociation.org
Also, I recently found a write up from a Lyme Patients conference held in San Francisco in January. It gets into some medical jargon that I don't understand, but it does explain some of the many ways that Lyme can royally mess up your body. It also explains some ways to help heal the damage via diet and supplements.
http://betterhealthguy.com/joomla/blog/258-lymediseaseorg-conference
Thank you for all the information. I did look up Virginia Sherr but I was unable to reach her. I was told she is in her late 80's and does not practice anymore but I will continue trying. I will be contacting that website looking for an LLMD doctor in my area. Thanks again for the kind words and for the emotional support I have not giving up yet, still fighting the fight ^_^. Thank you both. I will keep you posted once I am able to gain an appointment with a LLMD doctor.
Welcome to the Lyme forum! You'll want to find an LLMD who is associated with ILADS. There is a psychiatrist named Virginia Sherr in Holland who has written a number of articles about Lyme Disease.. You might try to call her office to see if she recommends anyone in your area.
Also, see if you can find a local support group. They are often a good source of referrals.
Also, see if you can find a local support group. They are often a good source of referrals.
Welcome to MedHelp Lyme -- we would be glad to help if we can.
In your situation, I would do what you are doing -- keep trying to figure it out and not be put off by docs who just can't figure it out.
Lyme often comes along with other diseases carried by the same ticks, so everyone's symptoms are a bit different. Nothing you report is out of line with what I have heard/read others say, so getting to a Lyme specialist seems a good thing to do.
You may already know that Lyme specialists can be from any medical discipline: internist, GP, immunologist, etc., and while docs don't use the nickname 'LLMD' (= Lyme-Literate MD) for themselves, we patients often use it among ourselves to mark a doc who takes a more progressive and broadminded view toward Lyme.
There is a split in the medical community about how hard or easy it is to get Lyme, to diagnose Lyme, and to treat Lyme. The most obvious types of docs who should treat Lyme (infectious disease MDs, for example) are the most stubborn of all about insisting that (1) Lyme is not a common infection, it's hard to get, (2) it's easy to cure with a couple weeks of antibiotics, and (3) any doc who tells you differently is committing malpractice.
I have recently learned that the main voluntary group for LLMDs, the International Lyme and Associated Diseases Society (ILADS), has a referral function to find an LLMD. Send an email to contact [at] ILADS [dot] org. There is also a phone number you can call, I believe. If you google ILADS [dot] org, you can snoop around there to learn more about it all.
I also just googled
LLMD philadelphia
and got a long page of links to various website postings of people also looking for an LLMD in that area -- some of the responses may be useful to you.
Be aware that there are some quacks out there, because Lyme is a fast-developing area of medicine, and that provides a wide diversity of views ... of them a bit on the wild side. By poking around on sites like this one, you'll have a good shot at finding a good doc. (You will often see LLMDs referred to on public sites like this one as "Dr [M]", which is an effort to give LLMDs cover in their local communities, since in some states/areas, taking a progressive view of Lyme can imperil the doc's medical license.)
If you have copies of your past tests of all sorts, you can take them with you to the LLMD, because he/she may find them useful to see what your body has been fighting off. It's like nonLLMDs see the world in black and white, while LLMDs see the whole rainbow. The details you give in your post (above) will be of interest to the doc, because Lyme and its co-infections are a puzzle to be worked out.
The tests most often used to diagnose Lyme are not very accurate, so it takes a doc willing to look at the patient and his/her history AND at the test results to reach some reasoned approaches to what to test for and how to read the tests and how to structure a treatment approach.
Lyme has the ability to move in and make itself comfy in your body, hence the odd symptoms that may pop up, like weight gain, low body temp, out-of-spec blood tests, and other things you mention ... everyone is different. Memory can also be affected -- you'll see the term 'Lyme brain', which we patients use to indicate forgetfulness, poor reasoning ability, and just being generally not very sharp mentally. Not everyone has it, but if you do, know that it would go away with treatment.
Treatment can be extended -- as in a year or more of antibiotics of various kinds, depending on what co-infections you might have. Some nonLLMDs are alarmed and oppose such extended treatment, but we can get in to that more sometime if you're interested -- after you find an LLMD and figure out a diagnosis. The good news is: you can get well, or at least suppress the bug so far that it feels like a cure.
You might search in the box on the upper right area of this website where it says 'search this community' for something like 'LLMD philadelphia' and see what you get, in addition to the google search suggested above. You can mess with the search terms to cover various geographic areas you might be able to get to. Also, feel free to post on this site a new message titled "Need LLMD near Philadelphia" or however you would want to phrase it.
Sorry to run on here. Let us know how you do, what happens, and if we can help further.
Best wishes --
In your situation, I would do what you are doing -- keep trying to figure it out and not be put off by docs who just can't figure it out.
Lyme often comes along with other diseases carried by the same ticks, so everyone's symptoms are a bit different. Nothing you report is out of line with what I have heard/read others say, so getting to a Lyme specialist seems a good thing to do.
You may already know that Lyme specialists can be from any medical discipline: internist, GP, immunologist, etc., and while docs don't use the nickname 'LLMD' (= Lyme-Literate MD) for themselves, we patients often use it among ourselves to mark a doc who takes a more progressive and broadminded view toward Lyme.
There is a split in the medical community about how hard or easy it is to get Lyme, to diagnose Lyme, and to treat Lyme. The most obvious types of docs who should treat Lyme (infectious disease MDs, for example) are the most stubborn of all about insisting that (1) Lyme is not a common infection, it's hard to get, (2) it's easy to cure with a couple weeks of antibiotics, and (3) any doc who tells you differently is committing malpractice.
I have recently learned that the main voluntary group for LLMDs, the International Lyme and Associated Diseases Society (ILADS), has a referral function to find an LLMD. Send an email to contact [at] ILADS [dot] org. There is also a phone number you can call, I believe. If you google ILADS [dot] org, you can snoop around there to learn more about it all.
I also just googled
LLMD philadelphia
and got a long page of links to various website postings of people also looking for an LLMD in that area -- some of the responses may be useful to you.
Be aware that there are some quacks out there, because Lyme is a fast-developing area of medicine, and that provides a wide diversity of views ... of them a bit on the wild side. By poking around on sites like this one, you'll have a good shot at finding a good doc. (You will often see LLMDs referred to on public sites like this one as "Dr [M]", which is an effort to give LLMDs cover in their local communities, since in some states/areas, taking a progressive view of Lyme can imperil the doc's medical license.)
If you have copies of your past tests of all sorts, you can take them with you to the LLMD, because he/she may find them useful to see what your body has been fighting off. It's like nonLLMDs see the world in black and white, while LLMDs see the whole rainbow. The details you give in your post (above) will be of interest to the doc, because Lyme and its co-infections are a puzzle to be worked out.
The tests most often used to diagnose Lyme are not very accurate, so it takes a doc willing to look at the patient and his/her history AND at the test results to reach some reasoned approaches to what to test for and how to read the tests and how to structure a treatment approach.
Lyme has the ability to move in and make itself comfy in your body, hence the odd symptoms that may pop up, like weight gain, low body temp, out-of-spec blood tests, and other things you mention ... everyone is different. Memory can also be affected -- you'll see the term 'Lyme brain', which we patients use to indicate forgetfulness, poor reasoning ability, and just being generally not very sharp mentally. Not everyone has it, but if you do, know that it would go away with treatment.
Treatment can be extended -- as in a year or more of antibiotics of various kinds, depending on what co-infections you might have. Some nonLLMDs are alarmed and oppose such extended treatment, but we can get in to that more sometime if you're interested -- after you find an LLMD and figure out a diagnosis. The good news is: you can get well, or at least suppress the bug so far that it feels like a cure.
You might search in the box on the upper right area of this website where it says 'search this community' for something like 'LLMD philadelphia' and see what you get, in addition to the google search suggested above. You can mess with the search terms to cover various geographic areas you might be able to get to. Also, feel free to post on this site a new message titled "Need LLMD near Philadelphia" or however you would want to phrase it.
Sorry to run on here. Let us know how you do, what happens, and if we can help further.
Best wishes --
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