i have been wondering about you. i am similar to you. wish i could be more encouraging. i am hopeful that tx for co infections will bring results.
no one knows what causes pls, ms, als, etc. lyme and co infections is a possibility. have you been treated for bartonella?
email or pm me.
Posts: 262 | From nj | Registered: Dec 2007
| IP: Logged |
jamescase20
Unregistered
posted
I started to check my own blood with a scope and found out a few things.
The biofilm issue seems paramount.
And the pennicllin and ceftin class (rocephren too) are the top lyme drugs.
But there are other infections.
BART! I am struggling too...finally resorted to gentimicin injections...and caused severe herx and migraine. Now I am jumping on mild hbot and hope to be able to resume tx. I feel like hell too. But not in a walker...too tired to work though.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Have you tested for all possible co-infections?
Have you had viral titers checked out?
Co-infections and reactivated viruses can thwart the response to Lyme treatment.
What ABX have you been on & in what doses besides Rocephin?
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
posted
I'm kind of at the same place. I've been on antibiotics for three years with very little improvement. I did test positive for Bart, so I hope after I treat that I will have more improvements.
It's very frustrating!
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
| IP: Logged |
posted
Sounds like bart to me too. I hope you find the answer SOON.
Can you try another LLMD?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
jamescase20
Unregistered
posted
Yeah thats what I was trying to imply..BART...its largely resistent it seems.
I found though a study that claimed doxy (I use minocin instead) and gentimicin was the only 2 in a 17 drug study that resulted in NO bart mutents. The study also said gentimicin was the only drug that killed bart directly. I sure did herx. OMG..2 days had to stop.
Will pulse gentimicin. U may consider this. My llmd said in 35 yrs he never saw any perm damage from gent. But he did warn the herx would be from hell. And it was.
IP: Logged |
jamescase20
Unregistered
posted
They also found they can use gentimicin once a day..instead of 4x a day...though the drug does ware off in 6 hours...this allows the body time for detox to protect the ears.
There seeing less side effects and same effectiveness.. Keep in mind...in newborns gentimicin is still the gold standard abx...since many bugs are NOT resistent to it. And genti is EXP gram negative.
IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Gentamicin can be extremely damaging - permanently - to the ears. It is not a drug that should be used for lightly or when other drugs will be safer.
When absolutely necessary, this drug should have experts advice on how to protect ears. Be sure you have absolute information on how to keep the ears safe.
Any changes in balance, or ringing in the ears, can be just some clues of ototoxicity.
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
This is because (1) you may really have a different pathogen causing your problem besides lyme, and it would be good to find that out.
(2) Lyme (as well as other pathogens) can cause the immune system to malfunction, allowing other pathogens to reactive. Thus you may be fighting lyme and other pathogens. This is what happened to me.
It really helps to get a thorough evaluation...then treat what is most obviously wrong.
Here's the info. I apologize ahead of time, for I don't know how to copy and past the long webpage links into the URL...and I'm sure not going to type the entire link in... I feel it is important to direct you right to the link.
Best, Timaca
========
If you have been ill with various multi-systemic symptoms and the doctors have run many tests on you and cannot figure out what is wrong, then consider getting these tests done.
40678 Lyme C6 peptide 2034 Lyme IgG and IgM western blot
Tick borne disease tests (Q-Fever through Lyme tests) can also be run at Igenex: www.igenex.com
Getting tested at Focus Diagnostics Lab can be a bit of a problem, unless your doctor has signed up for an account with them. Here's some links as to how to get the testing done. These links are at the HHV-6 website, and you must sign in to view the posts.
posted
Thank you for so many supportive responses and suggestions! I did the full battery of tests through Igenex and tested positive for Erlichia. My CD-57 was at 33. Antibiotics? Doxy for 2 months. Levaquin for 1 week (bad cramps in calves)Dr. decision to quit, not mine. I've been on Zythromax for most of the last 9 months in combo with Rocephin, Clyndamyacin, Flagyl, Rifampin and I'm sure 3-4 others I've forgotten. What is a typical cure for Bart?
I take Milk Thistle every day and have had liver function checked 3 times - all excellent results. Would Dr. C in Missouri helpful?
My Dr. H comes highly recommended and will not surrender to Lyme. Thanks again, Suzy How successful is the salt/Vit C regime. I love this feedback....Thanks Again.
Posts: 15 | From Menomonie, Wisconsin | Registered: Jun 2008
| IP: Logged |
Are you getting any pain injections? My daughter was seeing a pain specialist and for some reason, he started randomly putting steroids in her injections.
It set her back 2 years. She even had no steroids on her wrist band. It took me about 9 months to figure it all out.
If you have not had your vitamin D levels checked, have them checked. We found out that my daughter's levels were very low.
Once we started supplementing, she started responding to treatment.
We have been treating a long time too. I know how discouraging it is.
This time last year, my daughter was on the brink of using a walker and could not shower herself.
She is so much improved from that, but still is not at a normal, functional state.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I got a lot sicker the first year of treatment. My LLMD had me do the methylation genetic tests and I recently got my HLA tests back.
I have major issues with detox. I've been working on dealing with the methylation cycle issues via Dr. Yasko's protocol and been working with the biotoxin protocol from the beginning.
I am feeling better now and expect to continue improving. This is after 2 1/2 years of treatment. I was untreated for decades.
Detox, detox, detox. Must be the right kind of detox for your particular problems.
Ask your LLMD about some genetic testing. He can find out through ILADS I'm sure since my LLMD is a member.
Also, for some people it just takes time and the right combo of treatments.
Address yeast, metals (they are released when the bugs die), viruses and any co-infections along with genetic issues. Hypercoagulation and inflammation must be addressed too. Make sure you have no on-going exposure to mold. Mold will keep you from getting better.
This is off the top of my head, there can be many issues with chronic lyme patients and I'm sure I haven't remembered them all.
A lot of people report excellent benefits from the FIR sauna. I'm getting one as soon as I can.
Keep trying things and learning about all the issues until you find the right answer for you.
It takes time to heal from these massive, horrific infections. Be patient.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| 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!
![[confused]](graemlins/confused.gif)
![[hi]](graemlins/hi.gif)
Printer-friendly view of this topic