Treatment for 3.5 year old with Lyme/Bartonella (CSD?)/Barbesia

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dbasel
New Member


Date Joined May 2018
Total Posts : 14
   Posted 5/4/2018 7:10 PM (GMT -6)   
We started with clarithromycin and bactrim for Lyme and Bartonella. He has an "ASD" diagnosis but the root cause is unknown (could be Lyme or Lyme is a big contributor).

He had a major reaction on his face that appears similar to a sulfa allergy...not sure but doc (LLMD) said that's the closest it can be.

Since he had C.Diff in the past the doc said drop bactrim and add vancomycin which is also used for gut treatment.

Questions:

(1) are clarithromycin and vancomycin effective for Lyme and Bartonella?

(2) what should I expect once we add mepron for Barbesia?

Thank you!

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 1988
   Posted 5/4/2018 8:47 PM (GMT -6)   
dbasel,

Welcome to the forum. I am so terribly sorry about your little one. That is heartbreaking.

Others will answer your questions about the antibiotics. My mother had a terrible reaction to Bactrim last year. It was scary. I would never take a sulfa drug after seeing what happened to her. She told me her mother had the same kind of reaction.

There are other parents here, too. I'm sure they will respond when they see your post.

You and your little one will be in my prayers.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4893
   Posted 5/4/2018 10:05 PM (GMT -6)   
poor kid i would run as far away from western docs before they hurt him anymore .
second i would fix his gut then buy a rife machine
then i would find a great herbologist or learn yourself,
also find a great kiniseologist who can use a surrogate tester
get a ionic foot bath cilantro and clorella and test if dr klinghardt is correct on his cause of asd

if cdiff is bad he may need fmt and trillions of probiotics before he can resume oral treatment

mepron depletes coenzyme q10 from cells, need treatment for at least 120days+ he may go into a deep suicidal depression called the mepron blues, artminisin and zithromax might could do it if its not resistant

no they are not effective entirely...according to eva sapi clarith and vanco do not eliminate the round form, nor biofilm of borrelia , both are really hard on adults...

also the iron stealing, intercellular apicomplexian he likely has is called babesia there may be a few other pathogens causing his woes , such as erlichia toxoplasmosis cpn , and hh viruses 1,2 and 6 , cmv ebv etc etc. i have a naturopath out of country who does skype he may be willing to treat or get him to jemsek pedeacttics if you wanna continue antibiotics . iyou can pm me on lymenet flash if you like . best regards blue

btw bactrim gave me a mild sjs vasculitis almost killed me....i would get him the prescription based 900billion cfu probiotics calls vsl3 asap stat

can he swallow pills consider zhang or byronwhite products ....
also it is very likely, unless he was bit, that it may have been congenitally pass in utero ...i would run a dna connexions test on him and the mother to see borrielia and coinfections species type

Post Edited (bluelyme) : 5/4/2018 9:21:45 PM (GMT-6)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 5/4/2018 11:32 PM (GMT -6)   
dbasel said...
We started with clarithromycin and bactrim for Lyme and Bartonella. He has an "ASD" diagnosis but the root cause is unknown (could be Lyme or Lyme is a big contributor).

He had a major reaction on his face that appears similar to a sulfa allergy...not sure but doc (LLMD) said that's the closest it can be.

Since he had C.Diff in the past the doc said drop bactrim and add vancomycin which is also used for gut treatment.

Questions:

(1) are clarithromycin and vancomycin effective for Lyme and Bartonella?

(2) what should I expect once we add mepron for Barbesia?

Thank you!


Hi dbase - welcome!

I'm sorry your young boy has this nasty disease to deal with.
There is a connection with ASD, Pans, Pandas and Lyme/Bartonella.

I'm not sure if biaxin and vanco are sufficient to treat bartonella...especially if the bartonella isn't a recent infection - maybe lyme though.
Generally Rifampin or Rifabutin is used with another antibiotic.

Mepron is a tough one to tolerate. Lots of sweating, and anxiety, other psychiatric issues (depression for one)
I have been on mepron for many months. First time was about 8 months...and now again going on 3 months.
I haven't had the depression, and I just get a little bit of anxiety now and then - usually waking up in the morning it hits me...but goes quickly...within a few minutes.
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

dbasel
New Member


Date Joined May 2018
Total Posts : 14
   Posted 5/5/2018 8:29 AM (GMT -6)   
Thanks everybody...this is where we are in the overall treatment and diagnosis.

We suspect some heavy metal toxicity and weakened immune system from the mother. Following Klinghardt and with my son being a first born child to an older mother the toxic element always plays a big component.

My wife recalls getting bitten by many ticks as a child; her sister who is one year apart developed full blown Lyme in her 40s. My wife never had symptoms such as joint pain, etc although she thinks she does have fatigue and also brain fog (forgets easily). She's apparently lived with these symptoms her whole life and they are not debilitating.

We had done classical ASD biomedical treatment with my son (MB12 injections, High dose folinic - both with good success), as well as Cutler chelation (22 rounds).

In the meantime he did develop PANS/PANDAS so at 3y2m we ran DNA connexions and it found:

Bartonella Henselae

We then ran IgeneX comprehensive testing and found:

IGXSpot > 3 = Positive for Borreliosis
Blot IgG and IgM - Band 41 = Indeterminate - I think this says it's a maybe?
Relapsing Fever Borrelia = Indeterminate - this was interpreted as a no - correct?
B.Duncani = 20 = May or may not indicate active = interpreted as a POSITIVE.
Ehrlichiosis = HME IFA - IgG = 40 = interpreted as negative.
Bartonellosis = Henselae IFA IgG = 80 = matching the DNA Connexions as a POSITIVE.

So our suspicion is that it could have been congenital.

Wife is testing right now DNA Connexions and will do IgeneX next to match the son's list (or see what overlap there is).

We went to Sophia and he ART tested for Bartonella, Lyme, Strep. We tried the Lyme cocktail but it didn't help much by itself and also he hated taking it.

So with this in mind we went to Charles Jones and a local LLMD to get treatment and the prescription(s) were as mentioned above.

Currently he's been on clarithromycin for 1.5 months and bactrim for around 3 weeks. Bactrim gave him a rash on his face only which could have been this sulfa allergy so we have him on clarithromycin + vancomycin for the last 3 days.

If the bartonella is an old infection as we suspect everything is then this will not be effective correct?

Doc does not want to give rifampin because apparently it creates huge gut issues? I had suggested rifampin + azythromicin but apparently clarithromycin is just as effective as azythromicin and also covers strep and mycoplasma.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 5/5/2018 10:59 AM (GMT -6)   
Well if your seeing THE Dr Jones (older peds dr) then your son is in good hands.

As you know - he has a ton of experience and has healed many.

I haven’t heard of gut issues associated with Rifampin - although it can be hard in the liver.

Biaxin is a good antibiotic for these infections.
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

dbasel
New Member


Date Joined May 2018
Total Posts : 14
   Posted 5/5/2018 12:24 PM (GMT -6)   
Yes it is THE Jones smile. We're in Boston, he's in CT so a ~2 hr drive away and we make the pilgrimage as often as needed.

I'm not doubting his plan just want to learn from others experience. Mostly because my kid has had issues beyond the lyme (such as gut stuff, etc.) and I need to know what I'm up against.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33798
   Posted 5/5/2018 12:44 PM (GMT -6)   
dbasel said...
Yes it is THE Jones smile. We're in Boston, he's in CT so a ~2 hr drive away and we make the pilgrimage as often as needed.

I'm not doubting his plan just want to learn from others experience. Mostly because my kid has had issues beyond the lyme (such as gut stuff, etc.) and I need to know what I'm up against.


Generally Rifampin or Rifabutin is used to treat Bart.
Fluoroquinolones seem to be the most effective but they come with the fda black box warning and it’s not a risk I’m willing to take - and certainly wouldn’t for my child - unless all other options were exhausted.


Hopefully you will hear from other parents of kids in treatment.
We have a few that post about their experiences.

Dr J keeps talking about retiring - bless his soul - he has treated so many.

If he does retire before your son is well - there is a clinic in DC that now treats Peds cases.
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

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4893
   Posted 5/6/2018 12:20 AM (GMT -6)   
plasma rife may help the strep and bartonella and it sounds like your in good hands
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