LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Not Lyme but something more degenerative and terminal?

 - UBBFriend: Email this page to someone!    
Author Topic: Not Lyme but something more degenerative and terminal?
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
Anyone been told they don't have lyme but something more degenerative and terminal?
Posts: 412 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Garz
LymeNet Contributor
Member # 52095

Icon 1 posted      Profile for Garz     Send New Private Message       Edit/Delete Post   Reply With Quote 
lots of people with lyme get told they have
MS
Lupus
Dementia

etc etc

Posts: 200 | From UK | Registered: Feb 2020  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
Did you have a positive western blot test for Lyme, Mountainsky?

If so, Don’t look look for zebras when there are horses.

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

Posts: 6940 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 412 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
And yes if you're wondering back in 2019 when I entered treatment she still treated me
Posts: 412 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 6940 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 412 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
hiker53
Frequent Contributor (5K+ posts)
Member # 6046

Icon 1 posted      Profile for hiker53     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 6940 | From Illinois | Registered: Aug 2004  |  IP: Logged | Report this post to a Moderator
terv
LymeNet Contributor
Member # 29410

Icon 1 posted      Profile for terv     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 765 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 412 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
terv
LymeNet Contributor
Member # 29410

Icon 1 posted      Profile for terv     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 765 | From Somewhere | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
Mountainsky
LymeNet Contributor
Member # 51857

Icon 1 posted      Profile for Mountainsky     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 412 | From Massachusetts | Registered: Mar 2019  |  IP: Logged | Report this post to a Moderator
mlg
LymeNet Contributor
Member # 35383

Icon 1 posted      Profile for mlg     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 634 | From CA | Registered: Dec 2011  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.