Aa
The history of suffering
Hi. Just wondering if anyone is as frustrated as I am.
About two years ago, I was taken to the emergency room for kidney pain, flu like symptoms, numbness in my hands and face, joint pain but no fever. The ER doctors chalked it up to an allergic reaction to a medication. Every since then, I've had these "flare ups" for lack of a better term. Sometimes I'll have a low grade fever, sometimes I won't. The joint pain seems to radiate: starts in my neck with severe neck stiffness and will work its way down ending with my ankles. The kidney pain always occurs during this time. Once again, I have a flare up but I feel like this is the worst one. I'm always feeling like I need to clear my throat. My voice goes hoarse, joint pain, TMJ like jaw problems, instead of a low grade fever, its in the opposite direction with a temperature of only 97.2, but it still feels like I have a fever and the flu symptoms are still there. My hands shake, I get a weird tingling sensation in my face, specifically around my nose and mouth. Oh and horrible headaches to the point where I want to vomit. I'm bumping into walls that I know I can normally navigate around.
My primary care physician has told me its just some virus and I find that hard to be true. I was tested for everything imaginable including lyme and everything has come back negative. Well, if its so negative, I'm positive I still have these symptoms. I have a new Dr. and I'm going to see an infectious disease specialist but no one could take me until the end of the month. This flare up has been going on for about 2 weeks now. I'm just wondering if anyone else has/had the same problems/symptoms/negative results and still had lyme disease.
I appreciate anyone's input.
Thanks!
About two years ago, I was taken to the emergency room for kidney pain, flu like symptoms, numbness in my hands and face, joint pain but no fever. The ER doctors chalked it up to an allergic reaction to a medication. Every since then, I've had these "flare ups" for lack of a better term. Sometimes I'll have a low grade fever, sometimes I won't. The joint pain seems to radiate: starts in my neck with severe neck stiffness and will work its way down ending with my ankles. The kidney pain always occurs during this time. Once again, I have a flare up but I feel like this is the worst one. I'm always feeling like I need to clear my throat. My voice goes hoarse, joint pain, TMJ like jaw problems, instead of a low grade fever, its in the opposite direction with a temperature of only 97.2, but it still feels like I have a fever and the flu symptoms are still there. My hands shake, I get a weird tingling sensation in my face, specifically around my nose and mouth. Oh and horrible headaches to the point where I want to vomit. I'm bumping into walls that I know I can normally navigate around.
My primary care physician has told me its just some virus and I find that hard to be true. I was tested for everything imaginable including lyme and everything has come back negative. Well, if its so negative, I'm positive I still have these symptoms. I have a new Dr. and I'm going to see an infectious disease specialist but no one could take me until the end of the month. This flare up has been going on for about 2 weeks now. I'm just wondering if anyone else has/had the same problems/symptoms/negative results and still had lyme disease.
I appreciate anyone's input.
Thanks!
I just watched that movie too, but i didn't feel depressed after seeing it. It really educated me on what to look for, and what the general medical community is doing to doctors today & why we cannot get treated for it. THE IDSA has started its own personal witch hunt against any doctors who want to aggressively treat Lyme Disease but when you see the horrible symptoms that people develop, why not be aggressive about it? Would you rather die instead of become paralyzed or blind from Lyme Disease?
Now.. I have to try find a doctor who's affordable and will treat me for Lyme Disease, that's my problem
I got on some website for Lyme Disease but the dr they recommend is charging $475 just to step inside his office. I also read a review by one of his patients which was very discouraging, he didn't sound like a very kind man, and didn't spend much time at all with his patient. At $500 a pop, I want all the time being spent with the doctor I've paid good money to see, not the nurses. They cannot help me, the doctor must!
So.. does anyone know of a good Lyme Disease literate doctor in the southeast? They had Joseph Jemex, or Jesmex in CLT, NC, but he's been run out of town on a rail, and is now practicing in another state. What a shame! He's only 2.5 hours from us.. being in CLT and we're in western NC!
I really cannot afford to drive all the way to Washington, D.C. jsut to see a dr. At that point, I might as well go up to Connecticut and try find a doctor there.
Is anyone here from Connecticut and know of a good Lyme disease literate doctor. I would think there's a bunch to choose from seeing as Connecticut is NOT one of the states that claims it is "rare" to catch Lyme Disease in. That's where the disease got its name, from Old Lyme, CT!
Now.. I have to try find a doctor who's affordable and will treat me for Lyme Disease, that's my problem
I got on some website for Lyme Disease but the dr they recommend is charging $475 just to step inside his office. I also read a review by one of his patients which was very discouraging, he didn't sound like a very kind man, and didn't spend much time at all with his patient. At $500 a pop, I want all the time being spent with the doctor I've paid good money to see, not the nurses. They cannot help me, the doctor must!
So.. does anyone know of a good Lyme Disease literate doctor in the southeast? They had Joseph Jemex, or Jesmex in CLT, NC, but he's been run out of town on a rail, and is now practicing in another state. What a shame! He's only 2.5 hours from us.. being in CLT and we're in western NC!
I really cannot afford to drive all the way to Washington, D.C. jsut to see a dr. At that point, I might as well go up to Connecticut and try find a doctor there.
Is anyone here from Connecticut and know of a good Lyme disease literate doctor. I would think there's a bunch to choose from seeing as Connecticut is NOT one of the states that claims it is "rare" to catch Lyme Disease in. That's where the disease got its name, from Old Lyme, CT!
Welcome to MedHelp, sorry you have need to find us --
First thing: you're not crazy to be reporting these symptoms.
Second thing: you're right to keep pursuing what's wrong.
Third thing: You have many symptoms that I have had, and the ones I haven't had, others here have had. Every. Single. Symptom.
That doesn't mean you have Lyme or disease(s) carried by the same ticks, but it would be something to consider, as you are doing.
Do you have copies of previous medical tests done? Were you tested for Lyme and the coinfections? If not, no big deal but sometimes they are interesting.
You may be aware that there is huge divide in the medical world about Lyme. The so-called mainstream docs believe that Lyme is hard to get, easy to diagnose, easy to cure, and is no big deal. There is another faction that says Lyme is common, it's hard to diagnose because the symptoms vary (particularly when combined with the symptoms of coinfections), the cure is not easy esp. after a period of time has passed since infection (as with you and many of us), and it IS a big deal.
In the mainstream medicine camp is (unfortunately) the IDSA, or Infectious Disease Society of America. The ID doc you are going to see may or may not agree with the IDSA approach to Lyme+, and seeing him/her won't hurt, but don't be horribly disappointed if you get blown off. I'd go in with an open mind and tell him/her your story and see what happens. If you get blown off, go to Plan B. That's where we can help with our stories and what we have collectively learned about the highways and byways of Lyme.
MDs who take a broader view of Lyme and its treatment are sometimes referred to as LLMDs, short for 'Lyme Literate MDs', which is NOT an official term or designation, and is used by those of us referring to docs who do NOT follow the IDSA hard to get/easy to cure approach. MDs who are LLMDs usually don't use the term to refer to themselves, because they can and are harrassed by local and state medical boards in some areas, so they tend to keep a low profile.
So by all means, see the ID doc, see what response you get, if any tests are run, then get copies for your own file, and come back and talk with us. Then begins Plan B: helping you find an LLMD, if you want to go that route.
New Jersey is smack in the middle of Lyme territory ... tho truthfully, Lyme is everywhere. Some docs deny that it has spread nationwide, but it has, and it's in Canada too, and Europe. There are many different strains of Lyme, and the tests are not very accurate and don't detect all the strains. That's why having an MD who understands that a negative test doesn't mean you aren't sick and then takes steps to diagnose and treat appropriately.
No one here, to my knowledge, is medically trained, so you can't rely on us for medical advice, but it's a good place to come for information and advice and to unload.
If you are up to reading, the website for the LLMD-types is ILADS [dot] org. ILADS stands for International Lyme and Associated Diseases Society. Under the tab 'About Lyme', you will find 'Treatment Guidelines' by Joseph Burrascano, MD. The guidelines are long and detailed and meant for MDs, so don't freak when you see them. If you want some other forms of data, there is a book now out in paperback written by a professional science journalist whose family all got Lyme, and she reports on the disease, on their experiences and those of others, and most importantly to me, on the politics afflicting us all. It's not a short read, but I was hooked when I started reading, even tho I wasn't feeling well. It's on Amazon and elsewhere: Pamela Weintraub's 'Cure Unknown' -- a terrible title, because there are treatments and cures, just not quick and easy ones for the most part.
There is also a docmentary now out on DVD called 'Under Our Skin' about some patients and their experiences. I've said here several times that I don't care for the movie because it focuses for the most part on how afflicted the patients are and not on what to do about it -- and I'm always interested in what to do. When I saw the movie in a theater here, there was a Q&A afterward with the director (?) and some of the people in the documentary -- it took me a while to realize they were the actual people shown in the documentary because they looked so good and have come so far in treatment! If there were an addendum to the movie, it would be a good thing. I was totally depressed after the movie, except for seeing the actual people in such good shape. Fair warning.
(I'm a harsh critic of the IDSA, badly named books, and one-sided downer movies. Ha.)
I hope you don't have Lyme, but if you do, you hang in there! It's a good group here. Keep us posted with what happens, ask questions, give opinions, etc. That's what this place is all about. Welcome -- but sorry you have reason to be here!
First thing: you're not crazy to be reporting these symptoms.
Second thing: you're right to keep pursuing what's wrong.
Third thing: You have many symptoms that I have had, and the ones I haven't had, others here have had. Every. Single. Symptom.
That doesn't mean you have Lyme or disease(s) carried by the same ticks, but it would be something to consider, as you are doing.
Do you have copies of previous medical tests done? Were you tested for Lyme and the coinfections? If not, no big deal but sometimes they are interesting.
You may be aware that there is huge divide in the medical world about Lyme. The so-called mainstream docs believe that Lyme is hard to get, easy to diagnose, easy to cure, and is no big deal. There is another faction that says Lyme is common, it's hard to diagnose because the symptoms vary (particularly when combined with the symptoms of coinfections), the cure is not easy esp. after a period of time has passed since infection (as with you and many of us), and it IS a big deal.
In the mainstream medicine camp is (unfortunately) the IDSA, or Infectious Disease Society of America. The ID doc you are going to see may or may not agree with the IDSA approach to Lyme+, and seeing him/her won't hurt, but don't be horribly disappointed if you get blown off. I'd go in with an open mind and tell him/her your story and see what happens. If you get blown off, go to Plan B. That's where we can help with our stories and what we have collectively learned about the highways and byways of Lyme.
MDs who take a broader view of Lyme and its treatment are sometimes referred to as LLMDs, short for 'Lyme Literate MDs', which is NOT an official term or designation, and is used by those of us referring to docs who do NOT follow the IDSA hard to get/easy to cure approach. MDs who are LLMDs usually don't use the term to refer to themselves, because they can and are harrassed by local and state medical boards in some areas, so they tend to keep a low profile.
So by all means, see the ID doc, see what response you get, if any tests are run, then get copies for your own file, and come back and talk with us. Then begins Plan B: helping you find an LLMD, if you want to go that route.
New Jersey is smack in the middle of Lyme territory ... tho truthfully, Lyme is everywhere. Some docs deny that it has spread nationwide, but it has, and it's in Canada too, and Europe. There are many different strains of Lyme, and the tests are not very accurate and don't detect all the strains. That's why having an MD who understands that a negative test doesn't mean you aren't sick and then takes steps to diagnose and treat appropriately.
No one here, to my knowledge, is medically trained, so you can't rely on us for medical advice, but it's a good place to come for information and advice and to unload.
If you are up to reading, the website for the LLMD-types is ILADS [dot] org. ILADS stands for International Lyme and Associated Diseases Society. Under the tab 'About Lyme', you will find 'Treatment Guidelines' by Joseph Burrascano, MD. The guidelines are long and detailed and meant for MDs, so don't freak when you see them. If you want some other forms of data, there is a book now out in paperback written by a professional science journalist whose family all got Lyme, and she reports on the disease, on their experiences and those of others, and most importantly to me, on the politics afflicting us all. It's not a short read, but I was hooked when I started reading, even tho I wasn't feeling well. It's on Amazon and elsewhere: Pamela Weintraub's 'Cure Unknown' -- a terrible title, because there are treatments and cures, just not quick and easy ones for the most part.
There is also a docmentary now out on DVD called 'Under Our Skin' about some patients and their experiences. I've said here several times that I don't care for the movie because it focuses for the most part on how afflicted the patients are and not on what to do about it -- and I'm always interested in what to do. When I saw the movie in a theater here, there was a Q&A afterward with the director (?) and some of the people in the documentary -- it took me a while to realize they were the actual people shown in the documentary because they looked so good and have come so far in treatment! If there were an addendum to the movie, it would be a good thing. I was totally depressed after the movie, except for seeing the actual people in such good shape. Fair warning.
(I'm a harsh critic of the IDSA, badly named books, and one-sided downer movies. Ha.)
I hope you don't have Lyme, but if you do, you hang in there! It's a good group here. Keep us posted with what happens, ask questions, give opinions, etc. That's what this place is all about. Welcome -- but sorry you have reason to be here!
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