posted
I had a phone appt with my LLMD the other day. At the end of my rope. She still doesn't know why I am still sick.
Currently waiting on my MMP-9 and my TGF beta 1 blood tests to come back. I told her with the newly diagnosed MCAS and taking Zyrtec (used to take Claritan) and Pepcid AC and Quercitin that I have seen zero change in the last 3 months..
She is hoping my MMP9 and TGF beta 1 will at least go down. I asked her how accurate Great Plains lab is with their mycotoxin tests since I only barely tested positive for Orcha-A. She said I could always do another one through Real Time lab to compare and contrast, but Real Time is alot more money.
I asked her if there was ANY chance maybe I still have Bartonella since of course Igenex is not 100 %, I asked the same about the Relapsing Fever and Babesia (never treated for Babesia but was tested at beginning) but she said they all indicated a past infection, nothing was IGM pos.
Now I am wondering if it's another coinfection that was never checked such as Ehrichia/Anaplasmosis, Rickietta, Mycoplasmic pneumonia. When I first entered treatment in April of 2019 the M. pneumonia and Ehrichia/Anaplasmosis were negative (through Quest). Never knew this until recent.
My biggest fear is putting more $ into this with still no answers. I refuse to go into bankruptcy or clear my whole savings, but at one point do you say enough is enough. I was told maybe I should find another LLMD but again that's more $ along with their own testing.
I am torn guys. My anxiety and worry is at an all time high. I have never been this scared or hopeless in my life.
I'll be turning 37 in a few months. I still cant even find a decent apartment that I can afford. I am single with no children but want that someday. I am not getting any younger.
The only positive thing in my life is my job/career that I started over a year ago. I recently got a small raise due to my excellent performance evaluation. There has to be more to my life than just working. My family, friends and co-workers are even wondering if it's something else non-lyme related at this point
My LLMD said some of my thyroid blood levels seem off, in mainstream medicine they are normal (of course!) but she said something about my T3 on the low side and she could help me out with that. I do have insulin resistance and PCOS.
I had someone in the lyme community tell this all very well may not be lyme related anymore but due to many years on heavy duty psych drugs. He is not saying I never had Lyme/Co's, I did. But now we have to look outside the box. The same thing happened to him, he treated for years and still couldnt get well, it was due to benzo withdrawal.
Alot of my symptoms look like Protracted Withdrawal Syndrome now. My mouth dropped when I looked at these symptoms. I wasnt just on benzos but SSRI's and anti psychotics. The only psych med I am on now is Zoloft 100mg and I'm currently doing a *very* slow taper off.
Again, I just don't know. I am so torn on what to do now. There is no clear cut way to figure this all out, I'm getting pulled in all directions.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
Talk about a long road. I just don't know what to do now Lymetoo. I never thought things would get this bad almost 3 years later.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
That's the thing, I was always sick and getting worse thinking it was an on going "herx" but I wasn't seeing any improvement, not even a little bit. That is what's concerning everyone.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Mountainsky,
Just a reminder. I offered to help you some time ago, and you said, "maybe later".
Are you open to it now?
Posts: 2072 | From Earth | Registered: Jul 2013
| IP: Logged |
posted
Phoiph, I'll reach out to you when I change my mind or want information. Thank you.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| 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!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic