posted
Anyone been told they don't have lyme but something more degenerative and terminal?
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
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.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
And yes if you're wondering back in 2019 when I entered treatment she still treated me
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
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.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
| IP: Logged |
posted
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.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Definitely ask for your records. They may charge you for the copies, so be prepared.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8887 | From Illinois | Registered: Aug 2004
| IP: Logged |
posted
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....
Posts: 832 | From Somewhere | Registered: Nov 2010
| IP: Logged |
posted
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.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
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...
Posts: 832 | From Somewhere | Registered: Nov 2010
| IP: Logged |
posted
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.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
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.
Posts: 697 | From CA | Registered: Dec 2011
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic