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Bartonella in a child

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Hi- my dd7 is going back to LLMD Tuesday- already sent in new CBC and liver checks.

I want to start Bartonella treatment for her- she's on Amoxicillin and Biaxin for Lyme, honestly, feel like we are getting nowhere.

Here is the rub:

She can't take Rifampin, because she is still on low dose risperadone, they are contradicted.

She was on Azithromycin alone forever (18 months?) for Strep PANDAS,

and I truly believe from what I see Azithromycin is now ineffective.

 

 

So, without those 2, an effective protocol for Bartonella?

(We did A-Bart already last year)

 

Thank you for any input.

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Hi- my dd7 is going back to LLMD Tuesday- already sent in new CBC and liver checks.

I want to start Bartonella treatment for her- she's on Amoxicillin and Biaxin for Lyme, honestly, feel like we are getting nowhere.

Here is the rub:

She can't take Rifampin, because she is still on low dose risperadone, they are contradicted.

She was on Azithromycin alone forever (18 months?) for Strep PANDAS,

and I truly believe from what I see Azithromycin is now ineffective.

 

 

So, without those 2, an effective protocol for Bartonella?

(We did A-Bart already last year)

 

Thank you for any input.

Mycobutin is a different form of rifampin that will not cause any problems with metabolism of risperidone. But there are other issues with using mycobutin and azithro. together. One is they can cause neutropenia (loose of bone) in adults. How it works with the developing child I do not know. The other one is elongation of QTc heart EKG when these 2 are used together. Again how this affects 7 years I do not know. You might want to talk to your doc about mycobutin (without azithro??).

Red

Edited by red

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We are currently treating Bartonella with Amoxicillin/Bactrim for one child, Amoxicillin/Rifampin in another and Azitho/Omnicef in the third. We've also had great resolution to the twins Livedo Reticularis 'purple mottled skin' and overall improvement to baseline when we added MSM 'natural sulphur'. Our LLMD attributes the reticularis to Bartonella infection.

 

We often have a third or fourth antibiotic on board for coverage of other co-infections. For example: our sickest child 'younger son' is currently on Azithro/Omnicef/Mepron/Alinia... MSM, Samento, Quina and few other supplements predominately for detox/methylation. Azitho/Omnicef is for Lyme and Bartonella, Mepron is for Babesia, Alinia is for Babesia, Parasites, cyst form of Lyme/Lyme and Viruses. We will also be adding homeopathy in two weeks specifically for Bartonella. We've also used A-Bart, Bar-1 and other herbs in the past in addition to antibiotics for Bartonella.

 

I think the Amoxicillin/Biaxin combo is a good for treating Bartonella.... But if you are not making headway maybe you do need to add something like azithro for Lyme coverage. You might also want to consider adding MSM at low dose of 250 m.g. per day and build up to 2,000 m.g. over time. I often try new supplements on myself first to see if its helpful. MSM was very helpful to me and then added it to kids protocol. Our younger twins are still on 500 m.g. of MSM but will increase them 1,000 m.g. in about a month. Older son who is 8 years old and is up at 2,000 m.g. per day. After starting MSM we had our first bartonella rash surface for both older DS and myself. I got mine within 48 hours of starting MSM. I have a severe allergy to sulphur antibiotics but can take MSM with no problem and currently at 4,000 m.g. per day. I did herx for two months fairly intensely.

 

Hopefully I gave you a few ideas to discuss with LLMD: third antibiotic to cover other co-infections, MSM, homeopathy specifically for bartonella. Edit: I would also consider rotating in rifampin and perhaps dropping Biaxin when eventually off risperidone.

Edited by SF Mom

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I have mixed feelings about zith as well. But I think the reason zith is used so often is that it's an intracellular abx that works in tandem with these extracellular abx.Alone, it seems to do nothing for DS. But in combo with bactrim or rifampin or ominicef, we get good results.

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My ds was on rifampin along with many other antibiotic combinations and other meds (ssri and others). Dr. J always said it was not a problem as it would only make the other meds slightly less effective. I chose not to stress about it and he is now bart free. Hope this is helpful.

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Hi S & S,

 

Why is your child on risperdal? I ask because we found our 13 yo DS got worse on it and eventually we took it away. He is now on rifampin/nystatin/zithromax and augmentin with much better results. The rifampin made the biggest difference.

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Thank you so much, ALL very helpful.

 

She is on low dose risperadone because we had some violence- she is a beautiful child that has an inner strength- has always done well in school, but we hit very dark days at home and the poor child could not be helped, and my family was in trouble- we've been treating her health for 3 years- we believe she is gestational infected, with issues as an infant.

 

Neurotransmitter testing revealed extremely high dopamine AND seratonin, and the others- our first LLMD said he'd never seen anything like it-

tried risperadone eventually (have not tried 'others', always tried the health angle) and for 2+ months, it was wonderful- took off antibiotics and herbs at same time- we had a great summer-

until a virus came in and set off everything again. Or perhaps the infections progressed further off treatment.

 

SF Mom, I find her and I treat completely differently. She seems to respond well to homeopathics (Pekana big 3 detox, Antitox gentle drainage)

if I try a homeopathic, it feels like a straight shot of vodka, and I want to vomit.

I can do big gun treatments, so to speak, she simply has an overwhelming die off, goes to breakdowns.

I detox her the very best I can, many expensive supplements for gut, etc.

I see MSM at our Dr.s office, we've never discussed- very interesting.

 

In the beginning midst of re-treating my own Bartonella that was most likely insufficiently treated last year, and as I have beat down Lyme, cysts, parasites in myself the last months to have my Bart come surging back,

It seems intuitively clear it is Bartonella for her that is forefront -

So, we will try-

It seems clearer for me which protocol, not for her, so I will take some notes on suggestions here and hear what our LLMD thinks.

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My daughter was on Minocin for the bartonella. Combined with Amox/Zith for lyme, strep, bart. Tindamax on weekends for 10 months.

 

My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG.

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My daughter was on Minocin for the bartonella. Combined with Amox/Zith for lyme, strep, bart. Tindamax on weekends for 10 months.

 

My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG.

Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you seen results?

Edited by Hopeny

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My daughter was on Minocin for the bartonella. Combined with Amox/Zith for lyme, strep, bart. Tindamax on weekends for 10 months.

 

My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG.

Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you seen results?

 

I do not know if mino is like doxy other than they are both ABX. My doctor prefers mino as she feels it pass the blood/brain barrier better than other ABX. Also, doctors are usually hesitant to give doxy to younger children (my son is now 14). I asked her again about doxy last visit and she indicated that there is nothing magical about doxy in the treatment of lyme. She also likes this combination (azith/mino) as it will treat lyme/bartonella and pandas. Doxy also has some nasty side effects especially with sun sensitivity. Not a good solution for a child. My son was diagnosed with both Pandas and Lyme and eventually with CVIDs - common variable immune deficiency. I think it's probably more accurate to say that the IVIG was prescribed for the ongoing neurological conditions. Primary symptoms in rough order they showed up - rage, dilated pupils, physical/dystonia, loss of math skills, and OCD over the course of say 6 years. The dystonia/loss of motor skills has been a huge symptom with my son.

 

My son just completed his 6th IVIG. We have seen various levels of response to IVIG, all of them either distinctly positive or somewhat positive. My son does not slide back like many do. At worst, his hands tremble for a couple of days and this past time his left foot/ankle became very tight/jumpy but I do not really consider those sliding backwards. Prior to treatment his left foot/leg in particular were very tight to the point I could not move the foot/ankle using two hands and a lot of force! He even had botox at one point to relieve the tightness. Several months on ABX loosened the foot/ankle, IVIG has helped. I think we saw the greatest gains on the first and second IVIGs. After the first one his mood/behavior improved tenfold. It was already great - in comparison - after being on ABX for many months but the IVIG really jumped it forward. After the second IVIG we saw a great improvement in his schoolwork. He can do math again! He's not likely to major in math just yet but he gets it again. (His dilated pupils returned to normal after 4 months of ABX.) Since then the gains are more subtle. He continues to make progress though slowly. OCD is still hanging on. I think though that he needs to make more of an effort to get over the last of the OCD. We are really rewarded when someone we haven't seen in a long time sees him and can't get over how good he looks now.

 

Per the doctor , he (now) feels that my son is ahead of schedule and will likely need a dozen or so IVIGs total. It is interesting that the doctors are changing their opinion with time. I can tell you that when we first started IVIG last year, he (Dr. B) did not seem to have as much experience with the lyme patients, especially with the likes of my son with a primary symptom of dystonia. The doctors are all still in learning mode.

 

I also want to point out that we chose to wait 10 months after starting Lyme treatment for the first IVIG. It makes sense to me to get the infections under control before one tries to correct the immune system. We knew the ABX were working because of the lessening of symptoms. At 10 months, it seemed like progress had halted so we began the IVIG. Perhaps IVIG will shorten his recovery time.

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My daughter was on Minocin for the bartonella. Combined with Amox/Zith for lyme, strep, bart. Tindamax on weekends for 10 months.

 

My son was minocycline, augmentin, azithromycin and tindamax on the weekends for a good year. He had to drop the augmentin as we were falling behind trying to keep his bowels in good shape. He remains on the minocyclin and azithromycin but we have switched to flagyl on the weekends. Coming up on two years since the beginning of treatment for lyme and bartonella. No positive tests in a long time. At this point, doctor is keeping him on the ABX while son continues IVIG.

Mino is like Doxy, correct? Bill is the IVIG for Lyme or PANDAS? If Lyme, how man has your son had and have you seen results?

 

I do not know if mino is like doxy other than they are both ABX. My doctor prefers mino as she feels it pass the blood/brain barrier better than other ABX. Also, doctors are usually hesitant to give doxy to younger children (my son is now 14). I asked her again about doxy last visit and she indicated that there is nothing magical about doxy in the treatment of lyme. She also likes this combination (azith/mino) as it will treat lyme/bartonella and pandas. Doxy also has some nasty side effects especially with sun sensitivity. Not a good solution for a child. My son was diagnosed with both Pandas and Lyme and eventually with CVIDs - common variable immune deficiency. I think it's probably more accurate to say that the IVIG was prescribed for the ongoing neurological conditions. Primary symptoms in rough order they showed up - rage, dilated pupils, physical/dystonia, loss of math skills, and OCD over the course of say 6 years. The dystonia/loss of motor skills has been a huge symptom with my son.

 

My son just completed his 6th IVIG. We have seen various levels of response to IVIG, all of them either distinctly positive or somewhat positive. My son does not slide back like many do. At worst, his hands tremble for a couple of days and this past time his left foot/ankle became very tight/jumpy but I do not really consider those sliding backwards. Prior to treatment his left foot/leg in particular were very tight to the point I could not move the foot/ankle using two hands and a lot of force! He even had botox at one point to relieve the tightness. Several months on ABX loosened the foot/ankle, IVIG has helped. I think we saw the greatest gains on the first and second IVIGs. After the first one his mood/behavior improved tenfold. It was already great - in comparison - after being on ABX for many months but the IVIG really jumped it forward. After the second IVIG we saw a great improvement in his schoolwork. He can do math again! He's not likely to major in math just yet but he gets it again. (His dilated pupils returned to normal after 4 months of ABX.) Since then the gains are more subtle. He continues to make progress though slowly. OCD is still hanging on. I think though that he needs to make more of an effort to get over the last of the OCD. We are really rewarded when someone we haven't seen in a long time sees him and can't get over how good he looks now.

 

Per the doctor , he (now) feels that my son is ahead of schedule and will likely need a dozen or so IVIGs total. It is interesting that the doctors are changing their opinion with time. I can tell you that when we first started IVIG last year, he (Dr. B) did not seem to have as much experience with the lyme patients, especially with the likes of my son with a primary symptom of dystonia. The doctors are all still in learning mode.

 

I also want to point out that we chose to wait 10 months after starting Lyme treatment for the first IVIG. It makes sense to me to get the infections under control before one tries to correct the immune system. We knew the ABX were working because of the lessening of symptoms. At 10 months, it seemed like progress had halted so we began the IVIG. Perhaps IVIG will shorten his recovery time.

Thanks wow I really wish you continued improvement for your son. In addition to Lyme/PANDAS I have no found out my daughter also has the same immune issue my younger daughter has, essentially she has limited immune linebackers so will always have a delayed immune overresponse. I also just read a paper suggesting IVIG for Lyme so it has me thinking. My DD has different symptoms than your son, leg pain and some OCD, on again off again depression. We are in month 5 of treatment and I have set a mental reassment date of 12 months and have IVIG on my radar. What I have understood /thought so far was that it does not work that well in Lyme kids but maybe the idea is to go to a long abx treatment before trying. BTW I think Mino is a cousin of Doxy. I know my LLMD gave me a handout on it. We had DD on Doxy for 60 days and to tell you the truth it seems like Biaxin/Augmentin does a bit better. However the first time she did Doxy, 5 day course , it was like a miracle.

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