Mpost and others -- Bartonella/Lyme questions

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Dahlias
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   Posted 5/14/2018 5:38 AM (GMT -6)   
My daughter has symptoms that all seem to be bartonella related -- gut and bladder issues, anxiety, air hunger and heart pain. She tested positive for two strains of bartonella (pretty low positives). For Lyme, her IgM was negative (a few ind bands including 41) and IgG was positive for 5 bands including 41.

My take on this is that the Lyme is currently hiding out and not provoking a response but the Bartonella is. Correct?

Since she will never fully get rid of either of these (barring future developments), my goal is to treat the bart and improve her overall health without stirring up the Lyme and making her sicker.

Mpost, you said this in another thread today:

Bartonella is a generally benign parasite. It does not cause harm in normal people. You are not normal, this is the problem sad
In probably 90% cases on forum here, it's because of the lyme persisters that dampen our immune system. As soon as you wipe these out, the immune system starts working again.

Does a Lyme test like hers indicate persisters that would allow the bart to take hold? (Are they even persisters if you've never treated it yet?)

In her case, I'm suspecting that a leaky gut is the source of a lot of the problems. I've gotten her to start probiotics and I think it has helped a bit with the anxiety, but I can't get her to make many other alterations to diet or lifestyle yet. But my inclination is to try to get her on board with an all-out effort to improve her gut and overall health before hitting her with antibiotics (or maybe herbs, which I know nothing about but am leaning toward for her, for some reason).

This is all kind of scattered, but I guess my question is: Do we need to attack her presumably inactive Lyme to treat the bart? Or should we leave the Lyme alone and try to target just the bart (along with overall health), and is that even possible?

We have a followup appointment with her functional/integrative LLMD soon but I want to think all this through as much as possible first.

NicHostetler
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Date Joined Mar 2017
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   Posted 5/14/2018 7:25 AM (GMT -6)   
I think if you are going to hit bartonella you will be hitting Lyme too.

The most common combinations for bartonella are Rifampin with Zithromax or Rifampin with Biaxin.

Rifmapin taken alone is not usually enough to know barotnella out so it would probably be pointless to take alone. However, Zithromax and Biaxin hit Lyme.

So if you want to take on bartonella I am not sure it's possible without also stirring up Lyme.

You could do it the other way around though.. Hit Lyme but not a coinfection like babesia or bartonella.

It's so hard to know what exactly to do and none of us are going to get better copying someone else's protocol. I've tried so many times LOL. It's just trial and error.

Best of luck to your daughter and hopefully some others come in and weigh in with their opinion!
Very sick starting around 07/2016
Started treatment 03/2017
Bixain & Cefdinir - 3 months - plateaued
Then Biaxin & Minocycline - 3 months - did not improve
Tinidazole - 500MG 2x a day - 2 weeks
Mepron 5mL 2x a day Zithromax - 3 months - no improvement
Cats Claw, Gou Teng, CSA, Japanese Knotweed - 6-9 months - no improvement
CURRENTLY TAKING:
*Cordyceps
*Rifampin- 300mg
*Biaxin

sebreg
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   Posted 5/14/2018 9:14 AM (GMT -6)   
I think both infections leverage and amplify the other. Most antimicrobials targeting bartonella will also likely hit borrelia. For me bartonella is the dominant infection, but treating lyme has been important.

I think persisters are a natural phenomenon for lyme, so even without therapeutic challenge a certain % of the cells will be persisters.

Lifestyle, especially diet, has been helpful for me, I think it helps give therapies a better chance of succeeding.

There is a lot of trial and error for sure! I hope you guys have a good appointment that gives you a treatment framework you can feel good about! I think it's smart to do as much research as possible so you can understand various strategies and options.

Dahlias
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   Posted 5/14/2018 10:14 AM (GMT -6)   
Well, drat, lol. So much for not stirring up the Lyme. That makes sense though.

I have her test results on me now, so here they are if anyone would like to share your thoughts. I didn't realize that even for the Bartonella, it's only IgG that's positive.

Lyme IgM -- page is missing but 2 ind bands including 41
Lyme IgG -- 30, 34, 41, 58 positive ; 31 and 41 ind
Bartonella Hensley -- IgM neg, IgG 1:128
Bartonella Quintana -- IgM neg, IgG 1:64
Mycoplasma pneumonia -- 1.14

sandyfeet
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Date Joined Mar 2018
Total Posts : 374
   Posted 5/14/2018 10:45 AM (GMT -6)   
I'd be tempted to go with an herbal treatment as you have a lot more options on how to customize the treatment to what your daughter tolerates well.

Although I haven't tried it Jernigans formulas sound easy to follow and I'm intrigued based on the positive experiences of Deejavu.

Otherwise I'd probably go with Buhner's protocol and focus first on adding all of the herbs that support the organs and the immune system, followed by the cytokine modulators. You could then slowly and cautiously add the antimicrobials and see how she does. If her health is fairly good overall it might be a slower and more gentle approach to healing and you might only need to tip things slightly in her favour especially if you're able to heal the gut at the same time (not easy I know!).
Bulls eye rash August 2013
Started treating with Buhner herbs July 2017
Treating Borellia, Babesia and Bartonella as of November 2017

Girlie
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Date Joined May 2014
Total Posts : 33798
   Posted 5/14/2018 11:28 AM (GMT -6)   
Positive IgG for Lyme doesn’t mean it’s dormant - she could have symptoms

And as others have stated you will be hitting Lyme when treating Bart with abx.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sebreg
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Date Joined Jun 2015
Total Posts : 1013
   Posted 5/14/2018 12:47 PM (GMT -6)   
It's very difficult with lyme and the WB antibody measures. Some patients won't get any IGM response, and some will get a chronic IGM response. I'm guessing it is highly variable based upon individual immune system genetics along with the variability in how the infection manipulates the immune system in each case. There are patterns but unfortunately it's a spectrum of responses. I think it's part of the reason why the symptoms and these diseases can often look a lot like autoimmune conditions. Whether it tamps down or exacerbates immune system response, lyme often causes immune dysfunction.

So all that said I'd basically say just because IGM is not positive does not mean the infection is not currently active. Imo that's a common mainstream misperception that ends up hurting a lot of patients who end up missing the proper dx. Monica Embers and Nicole Baumgarth (amongst others) have shown some of these phenomenons in their research (mouse and monkey animal models).

mpost
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Date Joined Feb 2015
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   Posted 5/14/2018 2:21 PM (GMT -6)   
Dahlias said...

Does a Lyme test like hers indicate persisters that would allow the bart to take hold? (Are they even persisters if you've never treated it yet?)


yes it does. bart and many other relatively benign life forms that enjoy healthy humans and devour unhealthy ones like us. like EBV, Candida, etc... For some reason in people with lyme bart seems to be very very happy with the way the immune system is tweaked by the lyme persisters, and it has a really great time. But candida likes that too, EBV, Coxackie which is a relatively harmless childhood virus.

Dahlias said...

In her case, I'm suspecting that a leaky gut is the source of a lot of the problems. I've gotten her to start probiotics and I think it has helped a bit with the anxiety, but I can't get her to make many other alterations to diet or lifestyle yet.



you should try her on a gluten free, dairy free sugar free diet. Try at least gluten free for starters. I think these 3 are the main things that can get u have gut inflammation. If you can do, also do egg free and that will get you closer to Wahls diet, which is exactly that plus lots of nuts, very little to no cereals.

Dahlias said...

But my inclination is to try to get her on board with an all-out effort to improve her gut and overall health before hitting her with antibiotics (or maybe herbs, which I know nothing about but am leaning toward for her, for some reason).


yes if she has severe gut issues to begin with, it will be very hard to tolerate oral antibiotics unless she starts some sort of diet to restore some balance. you can try give her coconut oil or butter for start, i found that fantastic when i was the sickest, i literally felt it healing my gut... it's a wonderful food.


Dahlias said...

This is all kind of scattered, but I guess my question is: Do we need to attack her presumably inactive Lyme to treat the bart? Or should we leave the Lyme alone and try to target just the bart (along with overall health), and is that even possible?


no, u can treat directly bart but u will not resolve bart. and u cannot attack her inactive lyme. i mean u can try but the number of chemicals that work on persisters and are used by LLMDs is quite thin. there are a few but none work too well. that is why nobody really recovers fully in this state. not yet.

what u can do is keep her afloat for several years until research catches on and persisters can be effectively be killed. take some antibiotics until bart is less strong, take some herbs to try to stay away from abx for a while, then take antibiotics again, years pass.... research catches on and then maybe u can treat the persisters.

that is my plan for myself ... now im back on herbs after 8-9 months of antibiotics. i hope i can stay out of drugs for at least half a year. but i may be back on herbs soon... i really have no idea what is going to happen next. i have been treated with abx them herbs in the past, and relapsed on herbs quite badly. although it took a while for it to fully unravel. ... but i've been there. not pretty, this time i wont stay without abx for too long, at least my llmd told me it is really a bad idea to wait if things go south... we get back on abx...

for now i just have some eye pain and shin bone pain, minimal. Bartonella most probably. My immune function is bad, my WBC is low and CD57 just dived again to around 90.

ChickenArise
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Date Joined Nov 2015
Total Posts : 1530
   Posted 5/14/2018 3:07 PM (GMT -6)   
Dahlias said...
My daughter has symptoms that all seem to be bartonella related -- gut and bladder issues, anxiety, air hunger and heart pain. She tested positive for two strains of bartonella (pretty low positives). For Lyme, her IgM was negative (a few ind bands including 41) and IgG was positive for 5 bands including 41.

My take on this is that the Lyme is currently hiding out and not provoking a response but the Bartonella is. Correct?
...

Mpost, you said this in another thread today:

Bartonella is a generally benign parasite. It does not cause harm in normal people. You are not normal, this is the problem sad
In probably 90% cases on forum here, it's because of the lyme persisters that dampen our immune system. As soon as you wipe these out, the immune system starts working again.

Does a Lyme test like hers indicate persisters that would allow the bart to take hold? (Are they even persisters if you've never treated it yet?)


I have come to recently agree with Mpost's view on Bartonella. In trying to attack Bartonella I failed miserably and suffered side effects that I mistook for disease symptoms from every treatment designated for Bartonella both natural and antibiotic.

It seems the failure rate of treating Bartonella is so high that there must be more to it than meets the eye.

It is only after I began to approach Bartonella as if it exists in conjunction with a fungus that I made any progress, yet I still have some symptoms which are attributed to Bartonella.

2014 Mold Sick,2015 Clinical Lyme and co.,2016 Morgellons,2017 Remission
YT: ClintFromNYtoVA2
Twitter: @ClintFromNYtoVA
updated 21apr18 Blog: www.fascinatingtimetobealive.blogspot.com/
" The path to disappointment is paved with expectations "

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 5/14/2018 5:02 PM (GMT -6)   
mpost said...






no, u can treat directly bart but u will not resolve bart. and u cannot attack her inactive lyme. i mean u can try but the number of chemicals that work on persisters and are used by LLMDs is quite thin. there are a few but none work too well. that is why nobody really recovers fully in this state. not yet.

what u can do is keep her afloat for several years until research catches on and persisters can be effectively be killed. take some antibiotics until bart is less strong, take some herbs to try to stay away from abx for a while, then take antibiotics again, years pass.... research catches on and then maybe u can treat the persisters.

that is my plan for myself ... now im back on herbs after 8-9 months of antibiotics. i hope i can stay out of drugs for at least half a year. but i may be back on herbs soon... i really have no idea what is going to happen next. i have been treated with abx them herbs in the past, and relapsed on herbs quite badly. although it took a while for it to fully unravel. ... but i've been there. not pretty, this time i wont stay without abx for too long, at least my llmd told me it is really a bad idea to wait if things go south... we get back on abx...

for now i just have some eye pain and shin bone pain, minimal. Bartonella most probably. My immune function is bad, my WBC is low and CD57 just dived again to around 90.


If she is treating bartonella, the lyme could also be treated...with the same treatment as bart.

"....that is why nobody really recovers fully in this state. not yet. "

What do you consider fully recovered? You don't consider people who have been symptom free for several years recovered?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Psilociraptor
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Date Joined Jul 2016
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   Posted 5/14/2018 11:22 PM (GMT -6)   
mpost said...
Dahlias said...

Does a Lyme test like hers indicate persisters that would allow the bart to take hold? (Are they even persisters if you've never treated it yet?)


yes it does.


This is wrong. There is nothing generally inferable from antibody tests in regards to disease activity. IgM generally indicates a recent infection whereas IgG indicates a past or chronic infection but these are not indicators of disease activity. This is simply due to the temporal development of the response. Ie naive b-cells which have never been exposed to a pathogen produce IgM, then as they mature in response they typically switch to IgG isotypes. So IgM's tend to disappear in favor of IgG over time. This absolutely does not mean the infection is dormant.

Anyways that test is as positive as it gets. A lot of these diseases overlap symptoms so don't get too hung up on thinking it's "this" way or "that". I tested negative for bart and most of my symptoms are pretty classic Lyme. But I've gotten bladder and gut stuff. Heart pains for sure. I'll admit her symptoms don't sound THAT much like Lyme (ie neuropathy and arthritis), but it's different for everyone. Assuming that test was performed at a credible lab it's pretty unambiguous. Like everyones saying you're going to have a hard time targeting one and not hitting the other anyways. Which is all the better in my opinion. Both need to go.

Girlie
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Date Joined May 2014
Total Posts : 33798
   Posted 5/14/2018 11:27 PM (GMT -6)   
Psilociraptor said...
mpost said...
Dahlias said...

Does a Lyme test like hers indicate persisters that would allow the bart to take hold? (Are they even persisters if you've never treated it yet?)


yes it does.


This is wrong. There is nothing generally inferable from antibody tests in regards to disease activity. IgM generally indicates a recent infection whereas IgG indicates a past or chronic infection but these are not indicators of disease activity. This is simply due to the temporal development of the response. Ie naive b-cells which have never been exposed to a pathogen produce IgM, then as they mature in response they typically switch to IgG isotypes. So IgM's tend to disappear in favor of IgG over time. This absolutely does not mean the infection is dormant.

Anyways that test is as positive as it gets. A lot of these diseases overlap symptoms so don't get too hung up on thinking it's "this" way or "that". I tested negative for bart and most of my symptoms are pretty classic Lyme. But I've gotten bladder and gut stuff. Heart pains for sure. I'll admit her symptoms don't sound THAT much like Lyme (ie neuropathy and arthritis), but it's different for everyone. Assuming that test was performed at a credible lab it's pretty unambiguous. Like everyones saying you're going to have a hard time targeting one and not hitting the other anyways. Which is all the better in my opinion. Both need to go.


Good post, Psilo
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mpost
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Date Joined Feb 2015
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   Posted 5/15/2018 12:59 AM (GMT -6)   
Psilociraptor said...

This is wrong. There is nothing generally inferable from antibody tests in regards to disease activity. IgM generally indicates a recent infection whereas IgG indicates a past or chronic infection but these are not indicators of disease activity. This is simply due to the temporal development of the response. Ie naive b-cells which have never been exposed to a pathogen produce IgM, then as they mature in response they typically switch to IgG isotypes. So IgM's tend to disappear in favor of IgG over time. This absolutely does not mean the infection is dormant.


she has lyme/bart symptoms, 5 bands positive for lyme and positive bart. i think that is quite an impressive list of positive tests and symptoms, and many people on forum here do not have these tests and symptoms and still get treated and improve afterwards.

Psilociraptor said...

IgM generally indicates a recent infection whereas IgG indicates a past or chronic infection but these are not indicators of disease activity.


you know this is not true for lyme. IgM response remains erected even in some chronic patients.
please read this, it addresses exactly that problem: lymemd.blogspot.com/2009/12/igm-question-is-it-chronic-lyme-disease.html

i had positive IgM and IgG and was bitten 4 years before doing the WB

Girlie
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   Posted 5/15/2018 1:14 AM (GMT -6)   
mpost - Psilo said ''generally"



This is true with most infections (Igm recent and switch to IgG) - but lyme seems to be the exception.

I don't think Psilo was saying 'don' t treat' is he?


I had positive IgM after 14 months of symptoms.
My husband had positive IgM over 10 years after his bullseye rash appeared.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

mpost
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Date Joined Feb 2015
Total Posts : 1527
   Posted 5/15/2018 1:34 AM (GMT -6)   
Girlie said...

What do you consider fully recovered? You don't consider people who have been symptom free for several years recovered?


Girlie, honestly, i am not sure about several things related to that:

- if they only say they are symptom free vs really symptom free: i noticed with this disease that years of experiencing symptoms makes someone feel some as different nature. for me the leg pain is kinda part of life, if i would just not have eye issues i would maybe consider myself "symptom free"

- i do not really know how many of these symptom free folks exist that have had chronic lyme. It is clear some people recover towards 90% or so, have some lingering symptoms but just get sick of all this lyme chat here and go on with their lives. I think this is the vast majority of people that no longer visit/respond.

- 100% recovery and complete symptom free after being infected and untreated for years, now that is something i personally do not believe it exists. I think between 90% and 100% people are very biased and subjective in their evaluation. If i drink my morning coffee i have a temporary boost of "morale", have a particularly low symptoms week and i tend to feel sometimes im 100% , i post on healingwell a very positive post, but 5 days later i feel again symptoms, very little, yet i no longer log in here to report my eyes hurt again. see where im going ? some people just get so sick of talking about this, they are no longer reporting all their pains and problems.

how did i see 100% recovery is not really within reach yet, well i do not see any stars that have recovered 100%. none!

Yolanda still has some lingering symptoms, Shania Twain has, Thalia has, Ally Hilfiger same. I've seen at least half of them say they have some "emergency cabinet with herbs and supplements" to take "when some symptoms flare up". So none of the stars that we know have lyme really recovered fully. These are people that spend ridiculous amounts of $ on healthy food, drugs, state of the art tests, very expensive treatments...

mpost can simply stop posting here and u will think i fully recovered. when u are a star, it is harder to hide, so people do follow these high visibility individuals. and this what we see sad

Girlie
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Date Joined May 2014
Total Posts : 33798
   Posted 5/15/2018 2:20 AM (GMT -6)   
I communicate quite regularly with a few people who are symptom free - I have no reason to doubt that they are.
I believe that in Shanias case - she has vocal cord nerve damage - which doesn’t equate to ongoing symptoms or relapsing.

I’m thinking the opposite of you - we get into the habit of attributing everything to Lyme - so I’m not convinced “we” are saying we’re symptom free when there are a few lingering symptoms.
In fact - we’re likely to call something Lyme related when it may not be.

I may never get my collagen back on my hands or sleep good like I used to - is that lingering symptoms or is it damage that can’t be repaired and/ or is it a result of me having aged 5 years.

There are well known people who are symptom free:
The Olympic skier Angeli ......
There’s a tennis player - don’t know her name.

Isn’t Avril Lavigne?

Prob several others.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 5/15/2018 1:25:28 AM (GMT-6)


Dahlias
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Date Joined Jun 2017
Total Posts : 518
   Posted 5/15/2018 7:09 AM (GMT -6)   
Thank you all -- interesting discussion.

I will mull it all over and probably be back with some questions later.
"This too shall pass. It might pass like a kidney stone, but it will pass."

Lyme, babesia, mycoplasma pneumonia. Diagnosed May 2017. Neuro symptoms began September 2017. Treating 11 months so far.

Psilociraptor
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Date Joined Jul 2016
Total Posts : 1351
   Posted 5/15/2018 10:28 AM (GMT -6)   
Yes Girlie is right. I'm saying generally. This is the "textbook" example. Ie an idealized scenario. I have chronically elevated total IgM as well as IgM against Lyme over a year and a half out from onset of illness. There are various possible reasons for this such as antigenic variation which, in theory, could simulate "reinfection" and the constant activation of novel b cells which then must mature to produce IgG. Or other reasons I'm not aware of. My only point with this idealized depiction was to demonstrate why the absence of IgM should not be interpreted as the absence of disease activity. IgM is a frontline defense (again in idealized textbook scenario) and usually not preferred long term regardless of disease activity. It is not currently possible to ascribe significance to it's presence or absence in later portions of the disease. We don't know whether borrelia is interfering with b cell maturation, simulating reinfection, whether there are scenarios where IgM is actually preferred by the body, etc. Maybe one day we'll know what it all means, but given the variability in even controlled experiments like Embers recent trials I highly doubt this will be the case.

And I'm not doubting her results or saying not to treat. Like i said that's pretty unambiguous. I'm just saying don't treat the Lyme as dormant. These tests don't provide evidence for that and there is plenty of overlap with symptoms between these diseases to take each and every one of them seriously when someone is symptomatic.
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