I'm a mess. I started in February one night woke up with burning thighs at 3AM... Since then I've been on a roller coaster ride.
Is anyone here from NC? I'm interested in some info from someone personal ... ya know? I've been to thousands of sights, but it's nice to hear personal experience.
I recently had an appt. with Dr. J in NC
and my western blot read Neg. overall *************************************
but the Ig/g had 4 ind. bands and 2 positive. Would that mean I have Lyme?
I'm an active hunter and fisher with my husband and we live in a woody area with two dogs... no telling when I've been bit.
The last I remember was 4 yrs. ago I pulled a tick off after hunting several days previous. But I had no symptoms or rash.
But believe me I've had rashes and symptoms on-going since Feb.06 and thousands upon thousands of tests done (all neg.)
* I still continue to burn in my thighs, * now it's up in my back and arm muscles, * loosing hair by the day, * and a host of other weird things.
The only thing that makes me sleep through the night without burning and gives me some relief is ANTIBIOTICS ... I would think I have lyme.
I had an appt. today with a rheumatologist at Duke University and he thinks I have fibromyalgia??? He also said NC doesn't have a problem with Lyme's.... WHAT??????
Talking with someone else would make feel better, I've yet to find someone with Lyme to talk to.
Thanks, Desperate in NC
Posted by SarahC (Member # 10054) on :
Dear Desparate in NC,
You are not alone, while I am not in NC, I too have the burning body sensations, in my chest, breasts, armpits, back, bottoms of my feet, head...
So you are definately not alone on the burning as I am sure others will agree with Lyme.
I saw a Rheumatologist who told me I had Fibro and it could not be Lyme. Saw LLMD and guess what? Igenex test came back poistive for Lyme.
Lyme mimics so many other diseases. This is a terrible disease and I would not wish anyone to go through it.
I never had a rash or hair loss but they are symtpoms of Lyme.
Weird is right, I cannot even begin to explain how weird my body feels on a daily basis...
Keep your chin up and know you are not alone.
Posted by stella marie (Member # 7216) on :
sent you a pm
Posted by NCLymie (Member # 6689) on :
Dear NC Neighbor. I live 20 miles north of Charlotte, right by Dr. J., and have the same burning symptoms as you. When did you get tested and what did Dr. J. say? Did he do a clinical evaluation on you? Duke does not treat LYME disease, so they will not help you the way you need IF you have Lyme Disease. Not everyone has lyme, so I would advise you get another opinion and getting tested at the best labs through a doctor perhaps in New York or Connecticut.
I have had this disease for over 20 years but wasn't properly diagnosed until I saw Dr. J. Went on years of antibiotics and unfortunately still ill, however, I am still searching for help for my symptoms.
You may be helped by Neurotin. I have "neuro" lyme and it has affected my cognitive abilities, focus, pain through out my limbs and many more symptoms. I have almost all of htem on the list even though I've done many years of abx.
Right me back, or even PM me if you like. I'd love to talk to you. Posted by jwf (Member # 6292) on :
Hi Neighbor,
I live in the Greensboro, NC area. The rheumatologist at Duke is uninformed. Lyme disease is alive and flourishing in NC. FM is a disease that is diagnosed by excluding other diseases. To exclude Lyme disease requires a well informed physician (LLMD) and at least the two Western Blots by IgeneX or other specialized lab. Many have Lyme disease without ever having a bullseye rash or known tick bite. I had generalized rashes that gradually went away with the herbal treatment. My wife and I both contracted Bb in August of 2002 at Smith Mountain Lake in VA. We are symptom free now and have been using herbs only for 2 1/2 years. I do have some fatigue occasionally and that's it. PM me if you want to talk.
Blue Skies........John
Posted by klutzo (Member # 5701) on :
I ran a 3 city FMS support group for over ten years, since that was my 2nd misdiagnosis (the first was MS). It took a long time for me to face what I was seeing and hearing. It seemed to make no sense, based on what I'd been told about the rarity of Lyme Disease.
I could clearly see what appeared to be different stages in people who came to my group over the years, as well as in my own illness. I heard over and over from group members about ABX making them feel better or causing strange reactions, and was asked why, but had no answer.
Finally, a local Rheumatologist whom I respected came to the conclusion that FMS = Lyme, and I still did not believe it until my own personality underwent a 180 degree change and I started having rages. That scared me into getting tested. The herxing I did on Samento, and the 3 ring-shaped rashes I've had during treatment left no doubt
After 21 years, I now believe FMS and CFS are just a list of symptoms.....the symptoms of late-stage Lyme Disease. I have yet to see a person with those diagnoses who when PROPERLY tested (ie. by Igenex or Bowen) was not positive for Lyme, and who did not herx on ABX.
I cannot remember where I saw the following numbers, so I apologize for not providing a citation. Maybe someone who reads this will know. I know I read about this about 6 months ago, more or less.
These are the percentages of people with the diagnoses that Lyme most often imitates who turned out to have Lyme when properly tested.
Some of the samples were small and some much larger. Lyme could be an opportunistic infection in these illnesses, or it could be the inital cause that opens the door for the others. I favor the second theory.
MS = 35% ALS = 55% FMS, CFS, & Parkinsons = 95% AZD = 100%
Being positive for Lyme does not prove causation of these illnesses, but it sure isn't helping the health of anyone who has it. I would skip the Rheumatologist and see an LLMD.
Regards, Klutzo
Posted by ConnieMc (Member # 191) on :
I am also in NC. Duke is doing a great deal of harm to the residents of NC by denying the existence of Lyme. You saw the best doc in NC, Dr. J, however, his hands are tied due to a recent medical board ruling. Sometimes after an antibiotic challenge a test changes from neg to pos. Has anyone mentioned that possibility? You take several weeks of antibiotics then retest. My western blot was also negative initially, however after antibiotics I was very positive by CDC standards on both IgG and IgM. This sounds weird but the people who are the sickest are the ones likely to have suppressed immune systems, which means the western blot may be negative.
Sorry for your plight. If I can help, please PM me.
Connie
Posted by AliG (Member # 9734) on :
I'm sorry you're going through this.
Have you been tested for co-infections?
Treepatrol has a great post of Newbie links at the top of this board. Listed there is a link for reasons for false-negatives and also Dr. Burrascano's ILADS guidelines (great info), also info on co-infection symptoms.
I hope you are able to find help. This is definitely the right place to be! There are many very helpful people here.
Good Luck! Ali
Posted by Motherof1 (Member # 10197) on :
God bless you all!! Thank you so much for responding, I'm was starting to get lost in the world of lyme, beliving - not beliving... do I have lyme, do I not??? It is becoming much more apparent that I do. The scary thing is, I think I gave it to my son. I was bit 31/2 years ago (last tick I remember pulling off me) Shortly there after had a TERRIBLE illness... (did not put two and two together) I'm talking sore throat like crazy, so weak I could barely walk... And remember thinking that I had never had a sickness like this before... finally, after 4 rounds of z-pack that my GP prescribed the clouds started to part... I brushed it off as mono or strep or something crazy. Since then I've had a host of weird problems... bouts of nausea, bad headaches (that went away after a chiro) and then I got pregnant in 04. My son was born with a heart defect and we were all devastated... (although he's doing good now) Then when he was 1.5 old in Feb. is when I woke up burning and the pain has spread and getting worse. Will anybody check my son?????? Where can I get him tested? I've read that harvard or stanford or somebody did a test on effects of spirochete on fetus and the result was liver, heart or brain damage. My son would fit this catagory. Also, 2 weeks ago, we found out I was pregnant and I miscarried 5 days later. Which was awful, but now in retrospect... maybe it was for the best and especially since I'm in such daily pain. Isn't miscarriage's a sign of Lyme??? I'm at my wits end. If all of this is true and this political game that is being played is ruining the lives of people and now, my child had died because of it... I hope there is a special hell for these people who are involved and that the gates yearn for them. I will travel anywhere for my son and I.... Does anybody recommend great dr.? Thank you for all your posts and god be with us all..... I can't tell you how much better I feel when reading them, I'm not alone. I've lost all respect for Duke. A sentor here in NC is a personal friend of mine and my family... and him and his wife know what I've been going through.... I am going to ask a personal favor of him to do SOMETHING about this medical board thing. He is a long running sentor in NC and has alot of pull.... Somebody's got to listen!!!!
Posted by 5dana8 (Member # 7935) on :
I sent you a pm
Posted by Lymetoo (Member # 743) on :
Which two bands were positive? That is important!!
I'm so glad you found us! We can lead the way for you as so many of us have been where you are!
In the future, would you please double space after every sentence?
Many of us have problems with our vision. We want to be able to read what you've shared!! Posted by Aniek (Member # 5374) on :
So you understand, fibromyalgia is not a disease. It is a syndrome. A syndrome means it is a name given to a group of symptoms for which there is no known cause.
So a diagnosis of fibromyalgia just says "you have diffuse pain and other symptoms we see in people with lots of pain." That's all.
The way my LLMD puts it, my fibromyalgia was caused by Lyme. I don't personally think all fibro is Lyme. But I believe Lyme can be one of the triggers of the fibromyalgia symptoms.
I'm very sorry to hear about your miscarriage. Any stress can lead to a miscarriage. So it's possible it was just all the stress on your body was too much.
You may want to post in the seeking doctors forum for a doctor who will test/treat your son. I'm not sure if Dr. J treats chidren.
-Aniek
Posted by minimonkey (Member # 8693) on :
I have to post about the fibro-CFIDS part of this --- they are diagnoses that are handed out too frequently, and usually simply mean "we have no idea why you feel so terrible."
FMS, in particular, seems to end up being diagnosed later as Lyme a good deal of the time. There is also a lot of evidence that mycoplasmal infections can cause fibro-symptoms.
Based on A LOT of reading, I think *true* CFIDS is something a bit different. That said, a lot of lymies end up diagnosed with CFIDS at first, based on symptoms and lack of other findings.
Some of the original outbreaks of what is now called CFIDS, as treated by Cheney and Peterson, really appears to be viral (likely retroviral) in origin, at least based on the best research that has been done on it. Lyme can indeed be a co-factor. Early trials of Ampligen, an antiviral, showed huge promise in treating the CFIDS sufferers. I just read recently that the Ampligen trials are going to be started again -- 10 or so years later!!! Better late than never, I suppose, but what the heck? The politics of all chronic illness just boggle the mind.
A lot of lymies, too, have viral illnesses -- latent virii reactivated by immunosuppression, odd virii that rarely infect humans, etc. It wouldn't surprise me if we, too, are actually suffering from some as-yet undiscovered virus that is perpetuating the lyme in a symbiotic relationship. There is some work being done on this, but not nearly enough, and the folks doing the research are being denied credibility (of course.)
ACK!
Posted by minimonkey (Member # 8693) on :
Oh! I forgot to say that yes, miscarriage is often correlated to Lyme infection.
I hope you find relief for you and your son, soon.
Posted by bettyg (Member # 6147) on :
quote:Originally posted by Motherof1: God bless you all!!
Thank you so much for responding, I'm was starting to get lost in the world of lyme, believing - not believing... do I have lyme, do I not???
It is becoming much more apparent that I do. The scary thing is, I think I gave it to my son.
I was biten 31/2 years ago (last tick I remember pulling off me) Shortly there after had a TERRIBLE illness... (did not put two and two together)
I'm talking sore throat like crazy, so weak I could barely walk...
And remember thinking that I had never had a sickness like this before... finally, after 4 rounds of z-pack that my GP prescribed the clouds started to part...
I brushed it off as mono or strep or something crazy. Since then I've had a host of weird problems...
bouts of nausea, bad headaches (that went away after a chiro) and then I got pregnant in 04.
My son was born with a heart defect and we were (although he's doing good now)
Then when he was 1.5 old in Feb. is when I woke up burning and the pain has spread and getting worse.
Will anybody check my son?? Where can I get him tested?
I've read that harvard or stanford or somebody did a test on effects of spirochete on fetus and the result was liver, heart or brain damage. My son would fit this catagory.
Also, 2 weeks ago, we found out I was pregnant and I miscarried 5 days later.
Which was awful, but now in retrospect... maybe it was for the best and especially since I'm in such daily pain.
Isn't miscarriage's a sign of Lyme??? I'm at my wits end.
If all of this is true and this political game that is being played is ruining the lives of people and now, my child had died because of it..
I hope there is a special hell for these people who are involved and that the gates yearn for them.
I will travel anywhere for my son and I.... Does anybody recommend great dr.?
Thank you for all your posts and god be with us all..... I can't tell you how much better I feel when reading them, I'm not alone.
I've lost all respect for Duke. A sentor here in NC is a personal friend of mine and my family... and him and his wife know what I've been going through....
I am going to ask a personal favor of him to do SOMETHING about this medical board thing. He is a long running sentor in NC and has alot of pull..
Somebody's got to listen!!!!
My heartfelt sympathies on the loss of your baby. Praying for you/hubby/your son.
I'll have to go back and read everyone's response as I get lost easily due to neuro lyme. Bettyg
Mom of 1, feel free to copy this up where you posted and paste it there. When you do, I'll delete what I showed here. Will help other neuro lymies like me, Tutu, and hundreds more. Thanks! Bettyg
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