This is topic Positive for all coinfections - possible to ever recover? in forum Medical Questions at LymeNet Flash.


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Posted by yanivnaced (Member # 13212) on :
 
When my wife got sick in the summer of this year, she had her blood tested and it came back positive for Ehrlicia, Babesia, Bartonella, and Lyme!

Has anybody tested positive on the first try for all the above infections and eventually recovered from treatment, however long?

She's been in treatment for 5 months now, and has made absolutely zero progress. So far she's has had Amox, Doxy, Zithro and Mepron. She seems to be going downhill and is feeling much worse than before starting treatment. She's so weak she can't leave the house/drive the car anymore.

We're very worried we may never be able to untangle all the infections in her.

I feel coinfections are like long ropes - each additional rope makes it exponentially harder to untangle the mess.
 
Posted by TF (Member # 14183) on :
 
I tested positive for babesiosis, bartonella, and lyme the one and only time I was tested for co-infections, and I am fine now, off antibiotics for at least 3 years, enjoying life. So take hope.

I worked my way up the "food chain" of lyme doctors and was never tested for coinfections until I got to a top notch lyme doctor. By then, I had had 1 1/2 years of meds under 2 previous doctors who didn't believe in testing for coinfections.

Once I got to a really good doctor, it took only about 9 months to regain my health. I stayed on antibiotics a few months past that. Then, was finished.

So, the message is to go to the very best lyme doctor you possibly can right off the bat. Such a doctor will systematically treat each coinfection. They are used to patients with at least 4 infections. (She doesn't have mycoplasma too?) It is not a problem for them.

I have a friend who is nearing the end of her treatment (total of 9 months treatment). She had mycoplasma and had it treated for 3 months before she found out she also had lyme, babesiosis, and bartonella. In Maryland, this is a typical case.
 
Posted by johnlyme1 (Member # 7343) on :
 
I also had Lyme, bart, ehrlicia, babs, rickettsia, EBV for over a year before any treatment. 2 years of treatment. For me bay far ehrlicia and babs were the biggest ones making me feel so bad. I have been ABX free now for 9 months without any symptoms.
 
Posted by yanivnaced (Member # 13212) on :
 
Thanks.
That sounds hopeful.
My wife luckily tested negative for Mycoplasma.
 
Posted by CaliforniaLyme (Member # 7136) on :
 
YES- in fact I believe it makes her MORE LIKELY to recover!!! Why? I'll tell you why!!!

When I got sick, I looked around and said, "Who got well, who gets well, I will do what they do & did!" and I asked around and met people and what I found was that people who got either full remission or 100% symptom free while on maintenance abx had 2 things in common:

1. longterm abx
2. treated for ALL coinfections

regadless of whether they were positive or not. Since many people are blood negative with some coinfections your wife must be VERY VERY sick to be blood positive for everything!!! But she is lucky in that because I believe MOST people have most major TBDs but are blood negative from who I have seen get well.

It seems to take 2-4 years though!!! TIME is part of the equation in my experience. At 5 months the only people I would expect to be well are peopel who were just bitten and caught right away- in my experience-
Bestest wishes,
Sarah
 
Posted by lymeladyinNY (Member # 10235) on :
 
I was diagnosed with mycoplasma, bartonella, babesiosis, ehrlichiosis as well as Lyme - in Maryland.

That was five years ago, and, after a lot of stops and starts and going down the wrong road, I feel that I have conquered these co-infections.

The key is to be systematic. Tackle one disease at a time, slowly and surely.

The last co-infection I treated was bartonella and I did it over six months with half dose levaquin, 4 days a week, 3 weeks a month.

Great improvement is possible but it has to be done in a smart, informed way.

I didn't even have the internet the first three years of infection. I think the help I got here made a huge difference for me.

I'm still ill with Lyme disease itself. Now I'm learning a lot about alternative therapies because I can't tolerate antibiotics anymore.

Good luck! - Julie
 
Posted by yanivnaced (Member # 13212) on :
 
Is it necessary to take abx at the full recommended dosage to ever get better?

My wife seems to tolerate up to half dose of everything, beyond that she goes into bad never ending herxes.
 
Posted by tosho (Member # 10191) on :
 
Yanivnaced - maybe this article can be helpful for you.

Routine Dosing Errors in the Treatment of
Tick and Flea Infections and Psychiatric Problems

http://www.publichealthalert.org/PHA%20%20JAN%2008.pdf

(page 6 )


Coinfections are universal.
I can give you an example:
Today on our polish lyme forum wrote a woman.
20 years undiagnosed, last 3 years misdiagnosed with fibromialgia.
Today she received tests results:
Lyme - positive
babesia - positive
Bartonella - positive
Mycoplasma - positive
Yersinia - positive

Stupid infectious doctors comment it like this:
"Oh, nowadays Lyme is so fashionable"
[Mad]


Be well!
tosho
 
Posted by Visual Afterimage Man (Member # 10435) on :
 
Full doses might be too hard for people like your wife who probably has a very large bug load. Think of it as a die off effect.

The more bugs she has, the more the abx will kill. When the bugs die, they release toxins. Making herxs severe. Half doeses will kill slowly, but make life less uncomforable.

I know lots of people who start out at 1/2 doses, sometimes even 1/4 doses to have a small die off of bugs. Once the bug load is down, you can work your way up to a full dose and not suffer so badly.
 
Posted by Visual Afterimage Man (Member # 10435) on :
 
quote:
Originally posted by tosho:
Yanivnaced - maybe this article can be helpful for you.

Stupid infectious doctors comment it like this:
"Oh, nowadays Lyme is so fashionable"
[Mad]


Be well!
tosho

This makes me so mad. Fasionable is not a term to be used for an illness. This doctor should be "re-aligned" (to put it nicely).
 
Posted by yanivnaced (Member # 13212) on :
 
Thanks for all the replies guys.

That article makes me feel better about her low dosage tolerances. Looks like there is still some killing going on? Albeit at a much slower pace.

From your comments it looks like she might be in for several years of ABX treatment. In January we are going to see a Naturopath who works with Herbal treatments in parallel to ABX protocols - hopefully that will speed up the process somewhat.
 
Posted by Visual Afterimage Man (Member # 10435) on :
 
This is a very argueable point that I'm about to make... but it's my opinion.

The hardest thing about having Lyme and all it's ugly cousins is the amount of time it takes to make progress. YEARS is a very tough sentence.

No matter how much you try to tell yourself, "This is going to take time, do not get discouraged", it is very hard to not question your treatment.

It will take years.. gotta face up to it, but keep your eye on the prize. Atleast the prognosis is good.... however its a very lengthy process.
 
Posted by yanivnaced (Member # 13212) on :
 
quote:
The hardest thing about having Lyme and all it's ugly cousins is the amount of time it takes to make progress. YEARS is a very tough sentence.

"YEARS" is tough to swallow, but if progress is somewhat linear through those years then it's ok.

For example today she's at 50% of her former self. If she fully recovers, let's say 2 years from today, then she will be 75% one year from now, which is acceptable, and not too devastating since the trajectory is upwards.
 
Posted by lpkayak (Member # 5230) on :
 
i tested pos for lyme, erlich and babs...but later was pretty sure i had bart also.

one year of alternative stuff and abx not prescribed correctly (dosage or not told about what foods or other drugs not to have) and i was no better

then 3 years high dose doxy, amox, zith, biaxin, and also artemesia -some pulsing, some combos, careful to detox and treat candida and i got 80% better.

i had it over 10 yrs before tx. don't give up. good luck. lp
 
Posted by tailz (Member # 10014) on :
 
I think I have them all, and it seems I can't handle more than one antibiotic at a time.
 
Posted by luvs2ride (Member # 8090) on :
 
Yani,

Your wife has a lot going on and the buggers are tough to kill, but the herxing is a good sign that the medicine is working. She just needs to take it very slowly because too much herxing can cause permanent damage.

It is really hard to go slow when you just want to throw everything you've got at it and get well.

I think seeking the additional help of a naturopath is also very good.

I am currently 2 yrs into treatment, much of my treatment has been alternative which focused on building up my immune system. Actually, I was doing very well with this but I was bit again this spring and immediately digressed. So, I ran to an LLMD that would treat antibiotically but I did not give up all the healthy things I was doing to support my immune system.

In spite of testing positive for Babs WA-1, EBV, QFever, H.Pylori and tapeworms, I quickly bounced back and currently am living a normal life. I'm still in treatment.

I eat a stellar diet and have supplemented heavily during treatment. Today, I have reduced my supplements to just a few and try to get my nutrients from my diet and from juicing fresh fruits and veggies. In addition, I do CoQ10, liver support, probiotics & B12 (I eat very little red meat as it aggrevates joint pain). During the winter, I am supplementing D3. In the summer, I get enough sunshine so no need to supplement.

LLMD + naturapath is a very good combination. One doctor can't know everything.

Luvs
 
Posted by Dancer (Member # 11039) on :
 
quote:
The hardest thing about having Lyme and all it's ugly cousins is the amount of time it takes to make progress. YEARS is a very tough sentence.

No matter how much you try to tell yourself, "This is going to take time, do not get discouraged", it is very hard to not question your treatment.

It will take years.. gotta face up to it, but keep your eye on the prize. Atleast the prognosis is good.... however its a very lengthy process.

I needed to hear this tonight, thank you V A Man!

I was making excellent progress but seem to have slipped backward at about 1 year of treatment. Maybe a coinfection is kicking up or something latent reactivated. I have alot of faith in my doctor, but its hard not to start making unpleasant predictions for myself or question the treatment. Was ill for at least 10 years before diagnosis, so yes, it will likely take a long time. Longer than I was hoping I guess.

OK. *sigh*
Thanks for the reminder.
[Smile]
 
Posted by HaplyCarlessdave (Member # 413) on :
 
I had Lyme, babesia, and ehrlichia. I was one sick pup. It took me 2 years and several months of continuous treatment with concoctions of antibiotic and antimalarial drugs to get rid of the infections- and then there was a long period of rebuilding. I didn't "test positive on the first try", but it was an antibody test too soon after the ticks; also, the test may have been faulty (that 'doctor''s treatment was definitely faulty...)

What have the dosages been? I had many of the same abx, but they were in combinations, at high doses. With lyme many people need very high doses, or i.v.

Also, sometimes it's hard to judge progress. Several times, near the beginning of my treatment, I sure seemed to be making zero, or even less than zero progress! This was due to a combination of factor. The "herx" reaction was one. Another is that, the longer you feel lousy the lousier you feel. At least, that's how it is with me!

Your "rope analogy" is apt. But a good lyme doc will help you untangle the mess! See about taking Artimesia Anua and/or its extract, artimisinin, along with garlic; these were crucial for me.
Good luck, and hang in there!
DaveS
 


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