SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Not treating coinfections will likely not change the progression of your disease. In other words, if you don't treat them, you will likely remain sick and your chances of improving are much, much lower. It is the most important thing you can do.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
quote:Originally posted by BostonLyme2005: Hi,
meaning finding a new LLMD,
Yes, this made a HUGE difference.
Do a search lots of info on this
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
I realized a 90% improvement after switching LLMD's and being treated for co-infections. It's a must!
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
My co-infections, bart, mycoplasma and RMSF all responded well to the same abx I took for lyme, tetra. I tested neg for babs, but did two rounds of mepron to be on the safe side.
Posts: 1572 | From Pa | Registered: Jun 2001
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I went through the whole Lyme treatment (IV Rocephin and shots of bicillin), but I was still sick. My Dr. decided to treat Babesia, to see if this was the reason why I wasn't getting anywhere.
I tested neg. for Babs, but after she was treating me for a couple months the test was positive. I was on Mepron, Clindamycin and Artemesia (sp?) for a year+ and now the test is neg.....
And the best part is I really am starting to feel better for the first time in years.
Now we are treating the Lyme disease again. Also I've been on Stephen Buhner's ("Healing Lyme") protocol....and I think the herbs are helping, too. As well as exercise.
Susan Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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posted
Limesly, thank you so much for sharing that. I have an appointment next week with my LLMD. I feel that 9 months on abx and I am still not doing well at all, though there has been minimal improvement. I want to be treated for the coinfections. I will use your example to talk to him.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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Your welcome! I'm so happy when I can help. I agree with you....treat the co-infections, even if you test negative. I've heard that co-infections are the rule....not the exception.
Best of luck!
Susan Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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WildCondor
Unregistered
posted
Treatment for co-infections made an enormous difference in my overall health, Babesia and bartonella treatment in particular cleared my brain of fog and confusion, stopped the fevers and chills and sweats too. Overall very large improvement. Could drive my truck again and be independent!
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BostonLyme2005
Unregistered
posted
Hi Everyone and thanks!
I dont have the fevers, chills, sweats, and stuff, but I am going to be tested by MDL next week and I am trying to get intouch with another LLMD to treat me for co's....
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posted
I only had slight night sweats....but still had Babs. The rest of my symptoms could be Lyme or co's.
Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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BostonLyme2005
Unregistered
posted
Thanks Guys,
I placed a call to the other LLMD's office that I will be seeing soon, or, atleast speaking with the LLMD on the phone.....
He is on vaca and will be back on Monday...I will see what he thinks about co-infects, (he treats them), I am having MDL do a few panels on Monday......
My PCP is working with me as I cont. with Tetra.....
I have had a few more good days this week! They keep coming slowly, too slow for me!
posted
Aren't good days wonderful!!! But then you get a taste of what you are missing.
Posts: 92 | From Shepherdstown, WV | Registered: Jan 2006
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
For me, the coinfection that has made the biggest difference is treating a toxic mold exposure. Not everything that makes you sick comes from a tick's mouth!
In addition, I have had to treat the more common TBDs, and yes, they have all made a big difference.
I was treated for Lyme for 1.5 years even though I tested positive for Bart and HME (non-Igenex tests). I never improved. In fact, I thought my whole life was one constant herx.
I switched doctors and had an equivicol (Igenex) Babs Elisa. Was treated for 6 months and impoved greatly.
I am also a mold/neurtoxin susceptible person and using CSM (see www.chronicneurtoxins.com) improved my health even more.
I think all I have left now are Lyme and Bart. My life is a whole lot more liveable. I go out more, I shop, I have many more good days than bad. I basically feel the way I did when I had TBDs but didn't have anything quite bad enough to worry too much about. A whole lot of really bad things that I dealt with are gone.
Of course, I'm still in treatment and herxing brings stuff back but it only takes a little while to figure out what it is and do something about it.
I also want to add that many LLMDs were treating for Babs empirically at about this time lsat year and a bunch of people had great results.
posted
Well, not sure it made ALL the difference, but it got rid of one germ, which feels like progress to me.
Doc I was seeing diagnosed (thank you) and treated me for babesia. But it was not long enough and I ended up losing 35 pounds (too much) and for some reason he was reluctant to keep treating it. When I switched docs, got more treatment and think babs at least is gone (knock on wood). It took a total of 8 months of babesia treatment to get to that point. Some people need even more. This is sure not what the books say.
Didn't have bartonella, but some people find that treating for it made a big difference in their symptoms.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
My LLMD started me on Mepron for Babs, he said there were other options out there but this is his first choice med for it.
I am not sure how accurate the tests are. He uses the Igenex test and said that he does not think the Bowen co-infection tests are reliable.
He also said that if we didn't treat the Babs that I wouldn't make further progress in my Lyme treatment. He says that treating any co-infections is an absolute must.
Good luck with your new LLMD, Rob.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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Getting treated for Babesia and Bartonella seemed to make a big difference in my improvement.
Babesia dx was purely a CLINICAL for me. 6 mos. on Mepron, Zithromicin and artemesian for treatment. Doxy for the Bart for 3 months.
I did improve (pain lessened, lots weird s/s lessened) after initial LD tx, but I still couldn't DO anything until the Babs treatment. I am convienced tx for the Babs has made all the difference in my symptoms getting mostly under control. And me getting back to a semi-so-called normal life. (I also followed a strict, to me anyway, diet, suppliment, and lifestyle regime.)
As with LD, some docs feel that co-infections are rare. And if they know nothing about Lyme, I bet they really will roll there eyes at the suggestion of the oh-so rare-you-don't have-that "co-infections". But things are changing! Good luck.
Posts: 18 | From mid-atlantic | Registered: Jan 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Rob,
I hope your day gets better. since it doesn't sound like it's off to a particularly good start.
Also, keep us updated re the new appointment and any progress you're making with regard to co infections and treatment.
To the poster who raised the issue of treatment for other tick-borne diseases: I'm on rifampin for Bartonella. Some of my symptoms have completely disappeared and others have diminished significantly.
I hope this helps!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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BostonLyme2005
Unregistered
posted
HI Andie,
I did not sleep too well last night and I have a host of symptoms acting up, but I will press on even though I wish to go home and chill for a year!
quote:Originally posted by big lenny: how accurate are the tests for these co infections?
They're very unreliable. My LLMD treats all of his patients for all of the co-infections.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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BostonLyme2005
Unregistered
posted
Thanks,
I am on my way to Cali!
I am travelling an hour away, not really far, but I have to do it....
I hope we all become well soon! TODAY!
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BostonLyme2005
Unregistered
posted
I will see another Lyme LLMD Dr. on the 18th of May!
She has a great deal of knowledge I am told and she tests and treats for co-infects.....and I will be there!
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BostonLyme2005
Unregistered
posted
This is my next step. I wish I had done this earlier, maybe I would not have suffered for so long.
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
YES YES YES YES YES !!!!
Was recently treated for Bartonella. Tests for it were all negative. It was my best guess- LLMD thought babs, I thought bart. I'm now 5 or 6 weeks off all antibiotics except flucanazole for yeast and mold issues.
For the first time in 3+ years I have NOT relapsed into meningitis within 2 to 5 days after stopping antibiotics. Yay!! No meningitis, no ataxia! No comprehension drop! No feeling of bugs crawling all over me! Fingers crossed. This is a BIG issue for me.
All other symptoms are still here in varying degrees. I think some like heart and bone issues may be permenant damage. Bad arthritis. But will have to wait and see what happens. I also still have some kind of GI infection which I guess is not lyme or bart. I think both lyme and bart are gone.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
Yup - you Have to treat coinfections to get well again--
When I started Babs treatment it has made a Huge differance for me -- Quickly--
For babs I have taken Mepron- Bactrim DS and Artemisinin--
I was relapsing with babs so I upped my dose of Art to 1200mg a day-- and so far it has stopped the babs dead in tis tracks--AAhhh
Test for co infections are Poor at best-- my tests (Igenx) came back (IND)
I have both Lyme and Babs- For Sure- Every test that that I have Ever taken (years) has come back -Clean-
I personally give Zero weight to test results in my discision making --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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Was sick for 5-6 years before getting a lyme diagnosis. I was so excited to be on doxy and have a name for this crummy thing.
Stayed on doxy for 4 months while looking for a very savvy LLMD. I got a little better on doxy alone. The new LLMD started treatment for babesia first because my symptoms fit that the best.
We have done clindamycin/quinine and biaxin/plaquenil. I have also added very slowly in Artemesia (per Stephen Buhner's book). All have helped tremendously and so far has been my biggest leap.
I have to join the bandwagon on treating co-infections!
Posts: 460 | From Illinois | Registered: Aug 2005
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BostonLyme2005
Unregistered
posted
Cool!
I dont see myself taking Biaxin/Plaq again!
I hope something turns out on Thursday!
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BostonLyme2005
Unregistered
posted
I hope the same happens with me!
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