This is topic Not Lyme but something more degenerative and terminal? in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:

Posted by Mountainsky (Member # 51857) on :
Anyone been told they don't have lyme but something more degenerative and terminal?
Posted by Garz (Member # 52095) on :
lots of people with lyme get told they have

etc etc
Posted by hiker53 (Member # 6046) on :
Did you have a positive western blot test for Lyme, Mountainsky?

If so, Don’t look look for zebras when there are horses.
Posted by Mountainsky (Member # 51857) on :
In 2017 I did an igenex on my own ( before I saw a LLMD) and it said negative.

Then 2 years later in 2019 when I started Lyme treatment my LLMD did another igenex. I questioned things she said the results showed I didn't have lyme. Very high EBV titers. I tried many antivirals with no help.

A year later in 2020 I was very sick, she redid igenex again and I tested positive for Relapsing Fever, and Bartonella. No treatment for the Bartonella and Relapsing Fever is working. Now she's questioning if I have Bartonella but something else.

I'm even sicker...I'm getting worse. Nothing is working. If I keep going at this rate I'll be dead by next year or severely disabled.

No I'm not being dramatic.
Posted by Mountainsky (Member # 51857) on :
And yes if you're wondering back in 2019 when I entered treatment she still treated me
Posted by hiker53 (Member # 6046) on :
Do you have your own copy of those tests?

I found it extremely important to keep copies of all my tests and different mds seemed to interpret them differently and I wanted to read them.
Posted by Mountainsky (Member # 51857) on :
My igenex results from 2017 I still do yes. Everything else from my LLMD no.

As a matter of fact at my f/u on Tuesday I'm gonna request copies of my results/records. I've been thinking about that actually the few months...I want to see these things for myself as is my right.
Posted by hiker53 (Member # 6046) on :
Definitely ask for your records. They may charge you for the copies, so be prepared.
Posted by terv (Member # 29410) on :
You have a lot going on. Have you considered a second opinion from a different doctor or LLMD? I think I would be going in that direction. I am on my second LLMD because I was going no where with my current.

I know more money....
Posted by Mountainsky (Member # 51857) on :
Yes Terv I have thought about that. In another post on here I think it's under "general" I wrote briefly on that.

Yes unfortunately money is a worry. There is a LLMD down the road from my job actually. I scoped out her web page and info and it's alot more $ than my current LLMD. I might give this one more try with my current LLMD then move on to the another.
Posted by terv (Member # 29410) on :
I started with my current doctor a while ago and cannot even imagine what that initial appt cost. And that is only for another opinion. You might not switch...
Posted by Mountainsky (Member # 51857) on :
If nothing works after this next appt I'm just gonna give up. I'm tired of hoping and believing something will work only for me to be broken hearted and disappointed.

I just don't see myself not in physical or mental pain anymore.

I think treatment permanently disabled me. I like watching other ppl live their lives and have fun. That makes me happy caring for others and watching others thrive.
Posted by mlg (Member # 35383) on :
I heard from a good LLMD that when you are really sick go after Babesia or babesia like organism. I did that with Zithromax, Mepron and month 3 added Bactrum. Plus herbs rotated Artemisin and crypto. Did this for 8 months was a world of difference. Then rotate anti-microbial like Dr K or Dr Cor, and thin blood with heparin. Probiotics and sleep any way you can get it.

Powered by UBB.classic™ 6.7.3