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Pans/Bart child always tired and weak!


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Ds never feels good anymore. Treatment for Bart since July and Babs treatment beginning of Oct. He is on Zith 250mg

Malarone and some suppliments. We removed the augmenton and Bactrim because his stomach was always upset and he was just too weak to leave the house half the days. Doc said cut out a few of the meds and see. He had bloodwork and even while on the three anti B he showed active strep. Do these children feel tired and weak most of time. He flares with crazy emotions with each herx(i guess that what we see) and he stays fragile physically and mentally for several days. But now (past several weeks) there is no bouncing back. No school, no leaving the house most days.

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Sorry for what you are going through! Are you using a good probiotic (or three)?! We use 400-500 billion a day, which sounds like a lot but they really need it with all the antibiotics they will be taking to get well. Saccromyces boulardi really helps taken at the same time as the antibiotics, I believe it is the only probiotic you can ingest simultaneously with antibiotics and not have it canceled out. We do 25 billion with morning and dinner pills. Then we do VSL 3 mid day (112 billion) and custom probiotic powder at bedtime (250 billion). And also we have nystatin in the prescription mix. Not sure what you guys are dong, but thought I'd throw this out there. He could be drained from diarrhea and just really high yeast.

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I definitely feel for your situation as recovery from TBI/PANS is not easy. Here are some ideas or things to look into if you haven't

  • B-12 and zinc/copper ratios
  • Iron levels

B-12 deficiencies can lead to lack of iron hence anemia causing fatigue. It seems like your son is not detoxing, might be under oxidative stress from the treatment protocols or you are missing something (co-infection of 'BLO' babesia like organism, mold, viruses, etc).

 

Vitamin/minerals levels can be checked via hair sample, blood serum or intercellular testing. It is important to know that these vitamins are being utilized by the body. SpectraCell checks the inner white blood cell for utilization of vitamins/minerals/amino acids, etc. You can give tons of supplements however if their gut is all mess up they may not be absorbing or utilizing any of it. When the zinc to copper ratios are off and copper is on the high side it can indicate heavy metals issue. Here is what the SpectraCell test covers.

 

http://www.spectracell.com/patients/patient-micronutrient-testing/

 

Mold will also cause the fatigue you describe. Often those with an inability to detox biotoxin's (toxin from Lyme die-off) or mold toxin's make very little headway with antibiotic therapies. HLA marker will provide you with your son's genetic ability to detox these toxin's. Shoemaker Panel will help to confirm if its mold.

 

AND of course viruses present real problems with fatigue. For us, HD IV C has been extremely helpful in treating viral load and mitigating fatigue.

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  • 3 weeks later...

I definitely feel for your situation as recovery from TBI/PANS is not easy. Here are some ideas or things to look into if you haven't

  • B-12 and zinc/copper ratios
  • Iron levels

B-12 deficiencies can lead to lack of iron hence anemia causing fatigue. It seems like your son is not detoxing, might be under oxidative stress from the treatment protocols or you are missing something (co-infection of 'BLO' babesia like organism, mold, viruses, etc).

 

Vitamin/minerals levels can be checked via hair sample, blood serum or intercellular testing. It is important to know that these vitamins are being utilized by the body. SpectraCell checks the inner white blood cell for utilization of vitamins/minerals/amino acids, etc. You can give tons of supplements however if their gut is all mess up they may not be absorbing or utilizing any of it. When the zinc to copper ratios are off and copper is on the high side it can indicate heavy metals issue. Here is what the SpectraCell test covers.

 

http://www.spectracell.com/patients/patient-micronutrient-testing/

 

Mold will also cause the fatigue you describe. Often those with an inability to detox biotoxin's (toxin from Lyme die-off) or mold toxin's make very little headway with antibiotic therapies. HLA marker will provide you with your son's genetic ability to detox these toxin's. Shoemaker Panel will help to confirm if its mold.

 

AND of course viruses present real problems with fatigue. For us, HD IV C has been extremely helpful in treating viral load and mitigating fatigue.

Thank you! I had mold specialist come and do air quality test. All was OK! Blood test shows all immunities are dropping IVg IvM bilirubin up. He tested for possibly having g6pd and he has been on Bactrim for months. This is on the no use g6pd list. I am not sure but he looks pale and feels weak. I feel like the anti b made his immunities drop. They can do that! Now he is on Valtrex for his high cox sooci . He has been on 7 days and all seemed very well, but as usual he starts to feel warm and begins to act very unstable (crying/laughing) then he throws up. Tonight his feet are burning him. I feel like I am killing him. Valtrex is strong med. At first I felt like it was the panacea and as with all meds we have him on he begins to decline on them after a week or two and never bounces back until we remove. If we reintroduce he gets sick again. I understand the dangers of changing up meds so much but when he looks so bad and tells me he feels like he is dying, what do you do?. I will try to find a psychiatric drug that can calm his ocd and nerves down and hopefully control him a bit while we treat the viruses and such. I know that is so very difficult with these kids. SSri's have not been our friend in the past. We are doing the Mthyl test next. I was giving high pro biotic but Dr T said that too can cause issues in some if they contain D-Lactaid it can cause acidosis. I just use lactaid bacillus brand now. Day by day!! :)

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I definitely feel for your situation as recovery from TBI/PANS is not easy. Here are some ideas or things to look into if you haven't

  • B-12 and zinc/copper ratios
  • Iron levels

B-12 deficiencies can lead to lack of iron hence anemia causing fatigue. It seems like your son is not detoxing, might be under oxidative stress from the treatment protocols or you are missing something (co-infection of 'BLO' babesia like organism, mold, viruses, etc).

 

Vitamin/minerals levels can be checked via hair sample, blood serum or intercellular testing. It is important to know that these vitamins are being utilized by the body. SpectraCell checks the inner white blood cell for utilization of vitamins/minerals/amino acids, etc. You can give tons of supplements however if their gut is all mess up they may not be absorbing or utilizing any of it. When the zinc to copper ratios are off and copper is on the high side it can indicate heavy metals issue. Here is what the SpectraCell test covers.

 

http://www.spectracell.com/patients/patient-micronutrient-testing/

 

Mold will also cause the fatigue you describe. Often those with an inability to detox biotoxin's (toxin from Lyme die-off) or mold toxin's make very little headway with antibiotic therapies. HLA marker will provide you with your son's genetic ability to detox these toxin's. Shoemaker Panel will help to confirm if its mold.

 

AND of course viruses present real problems with fatigue. For us, HD IV C has been extremely helpful in treating viral load and mitigating fatigue.

Thank you! I had mold specialist come and do air quality test. All was OK! Blood test shows all immunities are dropping IVg IvM bilirubin up. He tested for possibly having g6pd and he has been on Bactrim for months. This is on the no use g6pd list. I am not sure but he looks pale and feels weak. I feel like the anti b made his immunities drop. They can do that! Now he is on Valtrex for his high cox sooci . He has been on 7 days and all seemed very well, but as usual he starts to feel warm and begins to act very unstable (crying/laughing) then he throws up. Tonight his feet are burning him. I feel like I am killing him. Valtrex is strong med. At first I felt like it was the panacea and as with all meds we have him on he begins to decline on them after a week or two and never bounces back until we remove. If we reintroduce he gets sick again. I understand the dangers of changing up meds so much but when he looks so bad and tells me he feels like he is dying, what do you do?. I will try to find a psychiatric drug that can calm his ocd and nerves down and hopefully control him a bit while we treat the viruses and such. I know that is so very difficult with these kids. SSri's have not been our friend in the past. We are doing the Mthyl test next. I was giving high pro biotic but Dr T said that too can cause issues in some if they contain D-Lactaid it can cause acidosis. I just use lactaid bacillus brand now. Day by day!! :)

PS I just checked his last SpectraCell test. ! YES Deficiency in copper and B12 (not zinc) But very interesting. Dr Tom didn't mention supplementing however. A few days a week I give him a methyl B12 1000mg. or just a B complex (methyl) I assume that would help.

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Do you have a Lyme specialist? Have you heard of Dr M in CT?

 

Do you have a Lyme specialist? Have you heard of Dr M in CT?

At this time we have dr T in NJ for PANS and Dr B for Lymes/pans and Dr Tom M. integrative. It may be over kill because I just added Julie McIntyre for herbalist. Dr.Tom will do what ever you ask but seems very busy. His assistant is a doll to work with. Even with these major heavy hitters though, we need to be our son's advocate and because things get missed. At this point we are waiting for more blood results bc he seems to be partial G6pd and much of his treatment in the past has been getting him sick. We shall see.

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