Hi All, I'm in the process of having a Western Blot kit sent to me from IGENX in Palo Alto , Ca. I have had a Elisa already done at my doctors office and it came back negative.
I have been having body twitching and jerking for several months now. I hate it, it wakes me up every night and some nights several times through the night.
About a year a go, I went to the doctor with circle rash on my arm, I thought it was ringworm, but my doctor said it was ezcema and gave me an ointment to put on it. It eventually went a way but now I'm wondering if it's lymes.
new doctor put me on amoxx for 4 weeks and i had a huge improvement on twitching and jerking. Been off it for 2 weeks and symptoms are coming back. Besides those symptoms, my soles of my feet are sore some mornings when i get up. Muscle stiffness and pain comes and goes.
Sometimes i think this is on a cycle. I think my doctor thinks i'm crazy with all these symptoms, but I am really having all this. I also get these scratch marks that appear on my legs and back and I know I haven't scratched myself. They even open up like a paper cut then crust over and heal. Has anyone had these with Lymes???
I'm very frustrated that the doctor can't figure out what is going on with me. I called yesterday and asked the nurse if my doctor could draw my blood for this western blot test and she said I might have to go to Quest Labs to have it drawn. My insurance won't pay for this test, so I'm willing to pay for it out of my own pocket and i'm still having problems with getting the doctor to do it.
Has anyone else had these symptoms and problems with their own family doctor.
Any info greatly appreciated!
-Mike
Posted by Geneal (Member # 10375) on :
Hi Mike. Sounds like you may have Lyme and
Possible co-infections too.
Bartonella springs immediately to mind.
Go to a walk in clinic and have the doctor write the prescription for the WB.
It should say Western Blot IgM and IgG, tests number 188 and 189.
Don't use Quest. I am lucky they found anything on me.
Now, Igenex costs 200.00 for the basic Western Blot, but it is so worth it.
Just remember that the doc ordering the test will get the results.
Make it clear that you want a copy of those
Results as soon as they come in.
A good tip is to have your doc write their fax number on the script.
The results get faxed about a week earlier than they come in the mail.
Lyme is cyclic about every 30 days you get worse.
Symptoms can come and go.
Please go to Seeking a Doctor section.
Post your city and state.
Someone will be able to direct you to the closest
Lyme Literate Medical Doctor (LLMD).
I highly recommend you see a doctor who specializes in Tick Borne Diseases.
As for problems with my family doctor...yes, and yes and yes.
I was refused any Western Blot because we don't have Lyme here.
So....called my vet. He recommended a walk in clinic.
That is what I did before I knew about this site.
Hang in there and welcome to the board.
Hugs,
Geneal
Posted by lostgurl (Member # 19293) on :
Yes yes yes to all of that.. I wanted to say I did have those odd scratch/paper cut like marks too- couldnt' be explained..
Bart does come to mind as well as Babesia with the sore soles...If money is an issue, the basic WB is all you need and the rest will be based on clinical aspects as are a lyme diagnosis and the co infections..
You are on the right track-don't give up. Igenex is the way to go but if you can't , bypass that terribly inaccurate ELISA and get the WB at a clinic. Best of luck
Posted by Pinelady (Member # 18524) on :
It is great you get the test when you have been off the antibiotic for at least 10 days.
Posted by marathonrun10 (Member # 19350) on :
Thanks to all of you for your information. Hopefully, I'll get some answers from the western blot. I have been dealing with all kinds of symptoms for a long time and all the doctors can tell me is my blood test are normal and they have done all kinds of blood test. At least now, i have a doctor that admits she has no clue what it could be and did put me on the Amoxx for 4 weeks to see if that helped after i suggested it.
Posted by Dekrator48 (Member # 18239) on :
Just remember that on the Western blot it wil give 2 overall interpretations....such as: Igenex: positive and CDC: Negative.
These are only reporting criteria not diagnostic criteria. You can have lyme (and coinfections) even if your Igenex AND CDC result say NEGATIVE.
What matters is each band result. There are species specific bands..in other words only a person who was exposed to borrelia bacteria would make antibodies to the proteins represented by the band #.
That is why it is so important, like stated above, to get a copy of your results right away.
Post your band results on this board.
In the meanwhile, I agree with the others that it sure sounds like lyme AND coinfection(s) going on.
Find a LLMD. There is often a wait to get in so make an appt now.
Start reading as much credible literature on lyme and coinfections as possible.