Topic: Can you get well ignoring co-infection treatment
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
I just wanted to know if anyone here has gotten well treating Lyme only and knowingly did not treat your co-infections?
One LLMD told me recently (which I know goes against popular belief) that if you get the LD under control, the immune system will strengthen and can often mop up the co-infections.
An LD patient asked me this question, she is allergic to many abx and may not be able to treat the co-infections. She can take 2 abx the penicillin's and the macrolides. I researched and found on Canlyme a sever nueropathic case of Bartonella (one of her co-infections) resolved completely with a macrolide, erythromycin. But it is her Ehrlichia I wonder about.
Will people such as this get well if they can ONLY treat the LD?
My ILADS MD says Biaxin kills LD, Ehrlichia and Bart,(not Babesia) yet I have read other LLMD's disagree. Has anyone had these 2 co-infections resolve on the macrolides or without treatment?
Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
Not me, not a chance. Made little progress. I had Babs & Bart and they weren't responding to many Lyme abx.
Had to switch LLMDs, (who also had an opinion that goes against popular belief) to one who'd treat Babs & Bart clinically. Made a BIG difference and got me out of bed after months of suffering.
I too had potential adverse abx reactions and suspected allergies, MCS etc but it was worth slugging it out for the progress. My LLMD also thinks the suspected allergies & MCS were Lyme & co-infect symptoms.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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quote:Originally posted by lymebytes: One LLMD told me recently (which I know goes against popular belief) that if you get the LD under control, the immune system will strengthen and can often mop up the co-infections.
I think that's totally false...especially when it comes to Babesia. I'm not that knowledgeable when it comes to Bartonella and Ehrlichiosis. Can this person take doxy for the ehrlichiosis??
I'd like to hear what others have to say.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Michelle M
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Member # 7200
posted
What TuTu said.
At least as far as babesia goes.
I know because I treated lyme HARD for a whole year, unaware I had babesia.
Had VERY atypical symptoms (no sweats) so I didn't test for it (against my LLMD's advice, I might add).
I'd get a bit better, pronounce myself "cured" of lyme (yay!!!), then back downhill I would go.
Finally I grew a brain (ha ha) and said, 'OK, about that coinfection testing thing...'
Only then did I start making any real lasting progress.
So at least as far as babesia is concerned, a resounding NO -- you will APPEAR to get better, but you will lose progress again and again.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Sammi
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posted
Hi lymebytes. As someone who has had several co-infections, I do not believe I would be here if they were not treated.
I have never heard of Biaxin treating Ehrlichiosis. It would seem your doctor has seen it work. I had both types of Ehrlichiosis and treated it with Doxycyline and then Minocycline. I believe Rifampin can treat it also. Has she tried it?
It is my understanding that many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This was true in my case.
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Foggy
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posted
quote:Originally posted by lymebytes: My ILADS MD says Biaxin kills LD, Ehrlichia and Bart,(not Babesia) yet I have read other LLMD's disagree. Has anyone had these 2 co-infections resolve on the macrolides or without treatment?
I would be suspect. I was on Biaxin often & it didn't make a dent in my Bart. It took specific combos including Rifamp, Septra, Leva to hit it. Also had to hit the cysts with Flagyl & Ceftin. Most LLMDs agree, chronic Lyme is NOT a "1 protocol fits all" program.
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My son has improved then relapsed several times on abx to treat lyme. Now he is being treated for bart and babs on an empiracle basis - initially worse, then asymptomatic for nearly a month.
Now much worse again with recurrence of previous lyme symptoms (hyperacusis, photosensitivity and joint pain) which we hadn't seen for a while.
So what is going on? Perhaps he never had the co-infections? Seeing LLMD soon so hopefully some answers then.
Chiz
Posts: 67 | From UK | Registered: Oct 2006
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SForsgren
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posted
I would say definitely not. Is your LLMD well-known? I've not heard any of the well-known LLMDs suggest this.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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lymebytes
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Member # 11830
posted
Scott Yes, in fact I believe you have seen these LLMDs at some point too.
If you think about it, it makes sense when you realize, as the doctor pointed out to me, hundreds of thousands of people will get LD/co-infections and NEVER, ever know why they were so sick/pain and many will get well without any treatment, never knowing they had tick borne diseases. Their immune system takes care of it eventually for many and then there are others who will continue to be sick without treatment.
We here at this forum may all know we have TBI's, but 90% of people with TBI's don't know they have Ld/co-infections and most will never know because of the illiteracy of the medical community at large. Over time their immune systems will get a many of them well.
A good example my brother in law. He lived with TBI's for over 20 years, was very sick early on and didn't know what was wrong (until I pushed him to test through Igenex & proved it to him) but for 20 years he was never treated - but over time he got better on his own.
It does make one wonder if you never treated this disease if our immune system would resolve the illnesses.
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi lymebytes
I wish I could type in the whole issue on co-infections in the 2007 summer issue of "Lyme Times" It has a huge special section on co-infections. Really informative.
you can order a single issue or just e-mail them & ask how you can obtain the summer 20007 edition.
I joined as a member & get their semi-annual issues. It's been invalauable. Lots of current information on lectures by the top LLMD's in the country.
And also gives me hope....they report on the progress of lyme activism.
Hope this helps Dana
Ps: I did 3/4 years of treatment & it wasn't untill my last & second treatment for babs did I get rid of my low grade fevers. So for me, the tx for co-infections has been really important.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
observation1: It is probable that somebody who gets a tick bite gets coinfections as well (i.e. highly unlikely that they got just borrelia).
observation2: When people get treated relatively early with doxy or amox alone, they get better and don't have any issues the rest of their life.
Why is this?
Given observation1 and observation2, I would conclude that if you kill off the borrelia, and your immune system regains its strength, the immune system is capable of handling the co-infections on its own.
Posts: 655 | From USA | Registered: Sep 2007
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adamm
Unregistered
posted
I got a month's worth of doxy, which I started taking 5 days after my bite, and I'm still sick!
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Adamm, I would highly suspect it wasn't your first bite.
Most don't remember being bitten anyway. Maybe the bite you did notice was the 2nd, 3rd or 10th time you were bitten, who knows?
I really wonder how many times I have been bitten in my life. Even flea bites count - I was into animal rescue and the flea bites I do remember, many, many of them and I remained healthy for years after them and had no idea fleas could carry any disease.
I think there is just "that" final bite that breaks the camel's back so to speak. I'd be willing to bet (if we could prove it) many of us who are chronic have been bitten numerous times without having a clue. Not many notice a tick this size (.)
I have been in treatment about 15 months now, my LLMD thinks I was bitten since being in treatment last May. All my Igenex tests came back stronger than ever & I was really sick the month of May.
posted
I wish it were true that people would just resolve the disease on their own ... I had it for over 30 years undiagnosed. I was pretty healthy most of that time, but several times had disabling symptoms for months at a time.
Biaxin for 8 months didn't touch the bart ... I'm taking Levaquin for it now (the Biaxin was used with Mepron for babs).
I think that someone treated right away who gets better on doxy alone probably does have their immune system rid them of coinfections ... but the coinfections did not have time to establish themselves in that case. And, not all those people do get better, some end up where we are needing treatment of coinfections.
I think this was all over the place ... I started the Levaquin a couple weeks ago and it's making my cognitive symptoms flare ... hope it made some sense.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I have seen these docs too (I know who they are), and they told another friend who has seen them that "Lyme is not an intracellular infection". Hmmmmm.
At the same time, I DO think there maybe something to this.....I have been reading recently about historical figures who were bitten and not treated, and who went on to do big things....also my LLND said that "bartonella and Lyme were found in Napoleon's soldiers"....so it's possible that this could be true? Plus there are undoubtedly weaker strains of all the bacterias/parasites.
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