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Originally posted by 2roads:
What would reduce these granulomas Selection?

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We had good luck with the Marshall Protocol (MP) for dealing with Bartonella since it was designed specifically for treating another granulomatous disease, namely sarcoidosis.

Most LLMDs are very anti-MP -- and for good reason, too(!) -- but the MP should be considered for resistant cases of Bartonella after other TB-co-infections have been treated, IMO.

There are pros and cons to the MP, especially cons, for Lyme patients -- but in the case of resistant Bart, then it's something you might want to consider. However, if so, then I would heartedly recommend that you seek advice from a separate website and NOT from the MP website which has been notoriously hostile to Lyme patients in the past.

Contact me by PM for further info about the alternate MP website. It's a very legitimate group and highly professional, but I have good reasons for not wanting to post the info openly. (I doubt that you'll be able find it via a Google search though, so you'll need to ask me instead.)
 

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Posted by aMomWithHope (Member # 19255) on :
 
2roads,

I'm facing the same scenario with my daughter--Bart H.--been treating for over a year, thought she was doing well enough that we would be able to stop Bart treatment and just focus on Lyme and Babs--but symptoms started coming back before we could discontinue treating.

It has been very frustrating for her--coming so close to what seemed like the end of treatment for at least one of the co-infections, only to have to keep going.......

Have you tried adding in any Buhner herbs, etc.? That's our next step.........
 

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Posted by 2roads (Member # 4409) on :
 
Thanks TX Mom, I will PM you.

Hope, your daughter sounds like my son. I prey my daughter does not have Babs like your daughter and my son, but time will tell.

I have not tried anything outside of antibiotics. She has not been treated for over 6 years. So, I do want to give that another shot, but I would like to add something, maybe homeopathic, to kick it up a notch. If none of that works, then I must look into alternatives.

Thanks.
 

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Posted by lotus26 (Member # 26556) on :
 
anyone get these granulomas on the top of their feet? i get these, they come and go and i get more on abx.
 

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Posted by TX Lyme Mom (Member # 3162) on :
 
The following article by Bartonella expert, Breitschwerdt, DVM, from NC State Univ. and published in the CDC's respected EID journal might be of interest because it explains the complex nature of this ubiquitous pathogen.

http://www.cdc.gov/eid/content/15/12/2080.htm

According to other research published elsewhere, the only humans who are at risk for developing a chronic infection with Bartonella are those persons who suffer from some form of immuno-suppression or immuno-deficiency -- such as the elderly, the very young whose immune systems are not well developed, and of course persons who are co-infected with Bb which can cause a variety of immunosuppressive effects.

For that reason, it can be extremely difficult to deal with, and as far as I know the ILADS experts on TBDs haven't got a handle on Bartonella yet, so don't expect any certain answers.

Our daughter's successful recovery seems to be the rare exception. I must explain that there was one other component to her success which I have described recently under another separate topic about hemolytic anemia. In other words, my previous post (above) about her successful recovery via the MP is only part of the story. Here's the link to that other topic, below. (Scroll down to find my post under that topic.)

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/99074
 

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Posted by lotus26 (Member # 26556) on :
 
what are your daughters symptoms? psychiatric?
 

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Posted by 2roads (Member # 4409) on :
 
Depression. When I ask why she says that, she says,"trouble sleeping, tired, not hungry, nausea, aches and pains (back specifically).

I don't know if the depression is causing the symptoms or the symptoms are causing the depression.

She also seems quite moody. Like, one minute she's quiet and smug-looking, and the next minute she's confiding in me like we are pals. She appears to carry a chip on her shoulder.

She acted irrationally in school when disappointed by a parental figure who had no time to listen to her issues. She went in the bathroom, ended up scratching her tummy with her nails, claiming she found relief. Needless to say, the social worker called me.

What does a granuloma look like?


 

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Posted by 17hens (Member # 23747) on :
 
Boy, that sounds very much like my daughter except for the scratching.
I did catch her a few years ago hitting herself in the head w/ her heavy math book. Said it made her feel better.
But that whole dark emotional air has lifted since being on Bart treatment.
 

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Posted by 2roads (Member # 4409) on :
 
Hens,



I prey this cloud lifts for us with Bart treatment, like it did for your daughter.

I keep wondering when I can start expecting results. But, it's so different for everybody because of all the varied factors.

When I walk into her room now, I feel like a mix between Elmer Fudd/Inspector Cruso ??( Pink Panther) and Inspector Gadget. With one brow up, I slowly wade into her room not sure if I should dawn football gear or a piece of tape for my mouth.

I keep hoping I will find my old daughter in there one of these walk-ins.

I am trying to line up a councelor/therapist to sit with her to address any things she may want to talk about, but can't with me or her Dad. The wait list is horrific.

 

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Posted by 17hens (Member # 23747) on :
 
Oh my goodness, 2roads, what an excellent description!! I am falling off my chair!!!

(I think it's Inspector Clouseau. Caruso was shipwrecked on an island.)

You know, my daughter's actually cleaned up the bombshelled room and has kept it relatively neat for about 2 months now. But of course, you meant the emotional and verbal bombshells. I do hope that gets better for you.

I do understand. For the last 7 years (before I understood she still had lyme&co) I've tiptoed around her, never knowing what would set her off. It's not a good way to live, not a healthy parent/child relationship for sure.

Do you suspect any Babs? Have you written down good days and bad to see if there is a 5-6 day cycle? That's the biggest way I was able to tell for myself as the symptoms were so minor.

But I can tell that treating the Bart & Babs together is knocking them out of the ballpark.

Well, glad we parents can stick together here to help navigate our kids thru this.
 

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Posted by aiden424 (Member # 7633) on :
 

quote:

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Originally posted by lotus26:
anyone get these granulomas on the top of their feet? i get these, they come and go and i get more on abx.

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I've had granuloma on the top of my feet for over 24 years. They move around but never completely leave. I got them about 10 days after I got sick. What causes this granuloma??

Kathy
 

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Posted by 2roads (Member # 4409) on :
 
Okay, then I feel like him too. I can do shiprecked...yeh, shipwrecked is up my ally too.

...and , her room also is a ba-bomb. It was meant emotionally like you said, but man, ya can't see the floor either.

I don't think she has babs. She never had a pos antibody. Her brother did. She doesn't have night sweats. She has gotten winded before though when swimming, which she thought was swimmer induced asthma. I think that improved with a week of Zith for a potential lung infection.

That's been awhile now though. But, I can't rule it out. God bless America.......
 

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Posted by little_olive (Member # 28063) on :
 
Bartonella has a difficult time developing resistance to gentamicin and doxycycline, according to one research paper I read. But it can become resistant to Rifampin very quickly.

Also, with lung problems, you might should have them tested for mycoplasma pneumonia. Then again bart can cause shortness of breath because it affects the red blood cells.

Hope this helps somehow


little olive
 

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Posted by 2roads (Member # 4409) on :
 
Thanks little olive. We are on Cipro and Zith.

But, I will inquire about gentamicin and doxy.

2roads
 

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Posted by canefan17 (Member # 22149) on :
 
Freeze Dried Garlic vs Bart Cyst/biofilm
 

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Posted by nefferdun (Member # 20157) on :
 
I think you take a macrolide with rifampin to prevent resistance.

Doxy has minimal effect against bart but is often given to children.

Zithro and biaxin don't do much on their own so they are combined to help out rifampin or bactrim ds. Mycobutin is in the same family as rifampin and some doctors believe it is better.
Gentamicin is IV.

Roxithromycin is a macrolide that crosses the blood brain barrier but you cannot buy it in the US.

Lyme suppresses the immune system so the bart is harder to get rid of. You need to take several abx to address the three forms of lyme while you are treating the bart. And you also need to be sure you do not have babesia.

One example would be doxy which has effect against the blood form of lyme and somewhat effective against bartonella. Zithro or biaxin which address intercellular lyme and boosts Rifampin. And then a cyst buster like tindamax, which can be pulsed. If there is any evidence of babesia, mepron or malorone and artemesinin.

Then you need supplement support to address the biofilms such as cysteine and lumbrokinase. And if you really want to be thorough, add in herbs as well such as resveratrol, andrographis, HH, and cumanda.

Be wary of plateaus and change abx before you begin to slide backwards.

It has taken three years for my nearly brain dead mind to realize these things.
 

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Posted by canefan17 (Member # 22149) on :
 
Bump.

Good stuff would love to hear more about Mycobutin.

Is Bart known to develop resistance to it like it does Rifampin?
 

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Posted by hansemand (Member # 35305) on :
 
TX lyme mom

FYI

persistant bartonella inf is not for the immuno deficient alone.The research of Prof Breitschwerdt shows the exact opposite.
Hansemand
 

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