New to the Board! I am here for my husband. He was bitten by a tick abour 2 years ago (at that time he was 35).
We did not find the tick, but noticed a rash on his upper arm. Upon watching it closely for 24 hours it grew in size. He did go to is PCP who said if it grew larger then to return.
The next day it indeed grew in size. His PCP initially put him on a few rounds of Antiobiotics for 2 weeks. During those 2 weeks I've never seen my husband in so much pain. He is not a man that complains a lot. However, just lying on the sofa seemed to cause him muscle pain. It was unbearble to witness.
After the round of Antibiotics his Dr. stated he did not test positive for Lyme disease and we thought it was over.
Well move forward about 1.5 years. My husband has continued to battle with muscle fatige from the waste down, muscle spasams, joint ache/pain, Stiff limbs and lower back. We've seen Chiropractic doctors, a neurological specialist... we've had a ton of tests run on him.
He has had so much blood work done and still..we have no answers. They thought it could be MS, Lupus,rheumatoid arthritis. But they believe he hasn't tested positive for any of this.
Although the Doctors agree that he is loosing mobility in his joints and muscles; they can't seem to figure out why.
He has been told several times he does not test positive for Lyme Disease. My husband is currently living with the symptoms and trying to not let it ruin his day to day life.
However, it isn't getting better and I am concerned it will worsen over time. I am not sure who to turn to or what we can do. My husband is 37 and walks and feels more like a 60 year old. His joints hurt and his legs get fatigued so easily.
I am certain he has some remaining infection from the initial tick bie 2 years ago. I just don't know who to turn to for medical help.
I also believe my husband has given up on finding a solution. He is just "living" with it and that is no way to function. And I am terrified it will worsen if we do not find someone to work with. Considering his fatigue is increasing.
Any help or advice is much appreciated.
[ 11-20-2009, 05:25 PM: Message edited by: Flo ]
Posted by Snailhead (Member # 18091) on :
Hi Flo,
Sorry to hear of your husband's issues. I will offer the usual things here: was your husband's Lyme test done through the lab Igenex? Was he tested for coinfections?
Have you visited our "finding a doctor" section? Sounds to me like he is indeed suffering (still) from Lyme, and maybe coinfections. I am not a health care professional, just a patient.
Please tell your husband there is help and hope. God bless you; welcome to the forum.
Posted by Pinelady (Member # 18524) on :
It is most likely Lyme.
Many patients test neg. And many were told neg.
when in fact they did have specific bands that
could be associated with borrelia but because
they were deemed to not have enough bands they
are told neg. It is a good idea to get copies of
all tests and bloodwork and start from there.
I would seek a LLMD by posting seeking a LLMD in
xxxx in that discussion group. Many there can
help you find the closest. I know how he feels. I
searched for over 2 years till I found it. I
tested thru Igenex after taking homemade
antibiotics for 3 months. Many times a patient
will not make antibodies necessary to be detected
on a western blot test. Please see Dr. C's WB
Explanation in top of thread as well as Dr. B's
treatment guidelines. Your best bet is to get him
to a LLMD asap. Most have a waiting list and a
cancellation list you can get on. Please be
advised most patients have many issues to treat
and now would be a good time to build up the
immune system to prepare for the fight.
Posted by sixgoofykids (Member # 11141) on :
Welcome to the board! I'm sorry to hear about your husband and I can identify completely. No doctor believed me. They all thought I was exaggerating and was a hypochondriac even though I was never asking for medicine, only answers.
It's a movie, recently put on the short list for the Academy Awards, about Lyme Disease and the political situation in the medical field surrounding it.
It sounds to me like there is no doubt it's Lyme (though I'm not a doctor). I mean, he was bitten, got sick, never got better. He also had the bullseye rash.
Please post in seeking a doctor for a doctor recommendation near you. He needs to see a Lyme specialist for proper diagnosis and treatment.
Posted by Deb133 (Member # 18544) on :
Flo,
He doesnt have to live with it. My daugher tested
negative three times but I kept insisting it was
lyme. Found an LLMD and she did test positive thru
Igenex Labs and is doing much better after 9
months of treatment. One doctor told me that
she had nothing medically wrong with her...that
she was just a stressed out teen.
There is a lot of hope and a lot of help with the
right doctor!
Deb G
Posted by garunner (Member # 19474) on :
Flo, As Deb said, get the IGENEX test....make sure to get tested for the coinfections Bartonella and Babesia as well.
Finding a doctor in GA is more difficult. Feel free to PM me is you want to know what I did.
Posted by randibear (Member # 11290) on :
i am so sorry you're here, but it's the greatest place to find knowledge about lyme.
i, too, had the bullseye but mine didn't expand. i was given two weeks of doxy and then told a thousand things including i was an attention seeker. uh huh...
find yourself a good llmd. you may have to travel out of state. i hope not.
otherwise if you have trouble getting a doc or meds, please consider the herbal (samento, cat's claw, cumada) or other routes.
he needs to start something right away.
please keep in touch
Posted by tick battler (Member # 21113) on :
Flo,
Sorry your husband is so sick. I would agree with the others - definitely sounds like he still has Lyme and coinfections. My husband was treated for 3 weeks after the initial bite and it was not enough.
You can find good doctors through this board. Go to the finding a doctor section. And you can read patient reports - send a PM to Metallic Blue for that. We are in PA and I take my husband to NY for treatment. I take my children to CT. It's worth the trip. They are getting better.
Just educate yourself with books on Lyme such as Coping with Lyme by Denise Lang and Cure Unknown by Pam Weintraub. Also - you can learn so much from this board. It's good you found us!
Good luck,
tickbattler
Posted by Lymetoo (Member # 743) on :
When you are tested that early, the test won't come back positive (most of the time).
He was WAY undertreated and never came close to getting rid of the lyme. He HAS LYME.. a bullseye rash is DIAGNOSTIC of Lyme. Period.
Please get a dr to sign off on a test thru Igenex lab.