Do I have Lyme-Confused - Lyme Disease Message Board

rockland · 10-17-2003, 10:08 AM

I am totally confused regarding the subject of Lyme. I would appreciate any feedback on this matter.

During July of this year I went to my Dermatologist for a skin rash on my left calf and also was feeling tired, had periodic back discomfort and felt like I had a cold but no fever(I suspected possible Lyme). He had a Lyme Elisa and Western Blot performed with the following results. The Elisa screen was positive and the IGG WB was negative but the IGM WB was positive in two bands. I was put on Doxycycline for three weeks at a 100MG twice/day dose. I initially felt better but at the end of August(about 5 weeks since I started the AB) I started feeling tired again. I called the Dermatologist and asked if I should continue the Doxycycline a while longer and he said no, but that I should see my Internist and first have a complete blood workup(which I did and it was fine).
Rather than go to a general practiioner, I made an appointment with an Infectionist Disease-"Lyme Specialist". She reviewed my symptons with the previous Lyme Test results and said I needed to give it more time and did not reco any more Doxycycline. I did ask to take a second Lyme test to see if the AB had any effect.
This second test came back with both Western Blots(IGG and IGM) negative?
I then made an appointment with a top LYME Specialist (among the top 100 Doctors by specialty in a 2003 US news and world report survey). He reviewed the two tests and gave me another complete exam and said I did not need to take any more AB but rather give it time.
For my own sanity, I asked my IDD for a third Lyme Test prescription. The results were as follows:
The Elisa screen was positive but at an improved reading over the first, The Western Blot IGG and IGM were both negative.
I was feeling better during Mid September until this week and once again started feeling fatigued and felt like I had a cold again but didn't.Could this be a HERX Reaction?
I have gone to a Dermatologist, Infect Disease Lyme Spec, and a prominent LYME Specialt recomended by the top 100 Doctors by Spec report.
I don't know what the next step shoud be. I have seen many notes from all of you on contiued use of AB but the Doctors don't want to do this. Thanks!

DTemple · 10-17-2003, 02:48 PM

Rockland, I probably can't help you, but my symptoms returned after three weeks of Doxycycline 100mg. twice per day and my doctor put me on it again for three weeks. I still have symptoms, so today I saw an infectious disease doctor who is retesting me for lyme, and also testing me for lupus and several other auto-immune diseases. The doctor I saw today said that Doxycycline is the drug of choice for systemic lyme disease, however some people are put on the IV Therapy for the more arthritic lyme disease. She said that it can take weeks and even months for symptoms to gradually go away.

rockland · 10-18-2003, 04:47 AM

Thanks very much.

basets · 10-18-2003, 08:50 AM

Forgive my intrusion here, but this is from a long time of research dealing with the situation that Mom was bitten by a tick in SC and not diagnosed for months.

The bacterium that causes Lyme is b Burgdorferi.

From 1911, it has been noted that the spirochete that is b Burgdorferi can implant itself in all of the tissues of the body. This is the reaction that is known as Lyme Disease.

Also, from 1911, it has been noted that the bacterium when it is not in an acceptable medium will become a cystic form. The only know antibiotic that can kill the cysts is Flagyl--also known as metronidazole.

My Mom's Lyme Doc first prescribed Zithromax 500 every day. (expensive) He also prescribed Augmentin 1000mg (1 gm) twice daily. She improved greatly on this. He has since cut it down--but NOW she is to take Flagyl along with her other meds to kill off the cysts.

It seems that when the cysts are in a favorable atmosphere, the spirochete will again be released. This is what we know as chronic Lyme Disease.

Unfortunately, the insurance companies do not want to deal with this.

I am tired of the run-around everyone gets here.

[This message has been edited by moderator2 (edited 10-18-2003).]