maybe you will be able to give me some hints... I was sick for 13 years before diagnosing (ELISA and Blot positive) and starting treatment for neurologic Lyme. It is 3 years since then. Tried various combinations of abx (ceftriaxone, high dose amoxicillin, tinidazole, metronidazole, macrolides, tetracyclines, quinolones, rifampin, fluconazole etc). Tried also GSE, colloidal silver, colloidal silver + peroxide. To my surprise the thing that most helped me was CS (also with peroxide).
Anyway, I am a lot better, like 80% normal. But when I stop silver or abx for a few days symptoms return. But I do not herx on abx anymore, I do not herx even on large doses of silver (like 500ml).
As for coinfections, I was + for mycoplasma. Weak positive for Bartonella.
So guys, any hints, ideas? I somehow feel that I don't have many of Lyme bacteria and the "killing approach" does not make much more sense. I do not want to kill myself. But maybe I am wrong and there still is some infection....?
Canga
Posts: 14 | From Poland | Registered: May 2012
| IP: Logged |
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
All the top lyme docs agree that if you relapse that quickly after stopping antibiotics, it indicates an untreated coinfection.
Coinfection testing is more unreliable than lyme testing, so you can't go by that at all.
The best lyme docs just automatically treat their lyme patients for "the Big Three"--lyme, babesiosis, and bartonella--right off the bat and simultaneously.
You won't get rid of any of these diseases until you get rid of them all as they help each other remain in the body.
Lyme disease bacteria grow slowly, so it takes at least a month of being off of medications to relapse with lyme. Not so the other infections.
I treated lyme extensively (for over 2 years) and couldn't go for 2 weeks without antibiotics without becoming just as sick as I ever was.
Sure enough, I switched doctors and was tested and turned out positive for babesiosis and bartonella. Previous doc had never treated me for these.
My new doc tested me through Igenex, ordering 2-3 tests for each coinfection including ehrlichia.
Once I treated these 2 coinfections, I was well.
Don't know if you can order Igenex testing in Poland.
"Repeated treatment failures should alert the clinician to the possibility of an otherwise inapparent immune deficiency, and a workup for this may be advised. Obviously, evaluation for co-infection should be performed, and a search for other or concurrent diagnoses needs to be entertained." (page 17)
"In patients who have chronic Lyme, who do not fully respond to antibiotics, one must search for an explanation.
In many cases, these patients are found to have pituitary insufficiency of varying degrees. The abnormalities may be extremely subtle, and provocative testing must be done for full diagnosis. Persistent fatigue, limited stamina, hypotension, and loss of libido suggest this possibility. Similarly, a small but significant number of these patients harbor toxic levels of heavy metals. Challenge testing by knowledgeable, experienced clinicians is necessary for evaluation. Treatment must be directed toward correcting the specific abnormalities found, and post-treatment retesting to assess efficacy of treatment and endpoint of therapy should be done. Suspect this when poor immune responsiveness and persistent neuropathic signs and symptoms are present." (page 20)
"Therein lies the significance of co-infections- if a Lyme patient has been extensively treated yet is still ill, and especially if they are experiencing atypical symptoms, suspect a coinfection." (page 22)
I basically had no symptoms of babesiosis or bartonella, but yet they were found by Igenex. So, you can't always go by symptoms.
Posts: 9931 | From Maryland | Registered: Dec 2007
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
I'm on the parasite bandwagon. When everything else fails, it's becoming clear to me parasites are the big issue. In fact, I'm coming to see they may be the primary issue as to why we stay sick and can't get over Lyme.
I am seeing huge progress in treating,,,, and it's only been about a week (and I'm seeing the bugs expelled, which is weird but empowering). Check out some of my other threads and posts. And especially, check out posts from glm1111. Her personal story is very inspiring and encouraging.
Can't say it strongly enough... you need to treat parasites. There is no downside to it.
Good luck!
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
It must be very frustrating to be sure after trying so many things. I don't know that much about tick disease but am learning. Thought I would throw this thought your way at any rate...
I was watching a vid by Dr. B. from I think it was 2012 at a doc conference. He stated something along the lines, if Bart infection is involved, many of his patients did not recover until they specifically used the fluoroquinolone antibiotic.
I see you listed quinolones... but did that include this specific one? He then said a very few did not respond to it though so he advised something like G???????cin can't think of it now. Oh shoot. May have to get back to you on that. hahaha. OR Someone else may know too. Lots of very smart folks in here probably watched that vid but remember what it was.
Hope you find your answer soon. ~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
| IP: Logged |
posted
Were these what you have used? I think this covers what he was saying anyway.
levofloxacin; any other quinolone or fluoroquinolone antibiotic such as ciprofloxacin (Cipro), gatifloxacin (Tequin) (not available in the US), gemifloxacin (Factive)
~dee
-------------------- IGeneX WB on 9.09: IGG:31.IND,34.IND,41+,66+ IGM:39IND,41++ on 9.09 same on 1.10 ME/CFS, CPN, EBV, HHV6 Posts: 77 | From Washington | Registered: Apr 2009
| 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!
![[Wink]](wink.gif)
Printer-friendly view of this topic