Tindimax & Tissue sampling

[mommakath]

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing?

 

Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.

[sf_mom]

Yes, two of my children are serologically negative for Lyme via Igenex. We finally unraveled Lyme via provocation and urine testing which is not testing for antibodies. As we progress through treatment Dr. H feels our children will convert at some point and start making antibodies for Lyme/co-infections. We are in process of retesting my younger daughter for babesia to see if those results are converting over. We are five months in treatment for her.

 

Because I am positive and two of the children are serologically negative they are assuming congenital Lyme for all three children. Because we do have positive results for Babesia/Bartonella in one child and positive DNA Lyme results in another child.... all are assumed to have similar infections as long as clinical symptoms are there.

 

If I had saved my children's cord blood you bet I would have tested them for Lyme via tissue samples. It is often a good way to locate the bug.... I have also heard of some Dr.'s taking fluid from the knee and typing that for Lyme.

 

Tindamax or some other type of cyst buster is critical when treating for LD. I currently take Tindamax and my children are on Alinia and it is definitely helping in their recovery.

 

-Wendy

[NancyD]

Welcome to the Lyme forum. I think most of us go back and forth between the PANDAS and Lyme forums.

 

My DD14 is on Augmentin XR for PANDAS and Azyth and Tindamax for Lyme. Also Diflucan. And she does IVIg. At first she was taking daily dose of Azyth and Tindamax but after a month we decided it was too hard on her stomach. She had diarrhea every day. So now we are pulsing the two (azyth 4 days a week bid and Tindamax 3 days a week bid) and that seems to work much better! I think DD is doing really well although we have not yet seen a reduction in her anxiety and OCD. I'm sure that will take time. We will explore possible tx for bartonella. The HD IVIg infusions have not made DD any worse. Too soon to say whether they will help with the remaining symptoms. Other PANDAS symptoms (bad tics and daily violent rages) stopped after the first HD IVIg infusion in 2008 and have not returned.

 

MY DD was scoped (from both ends) last summer but did not think to do tissue sampling for PCR. "If" they still have the tissue, would it show us anything other than what we already know??

 

Nancy

 

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing?

 

Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.

[mommakath]

Nancy,

Thanks for the input. We've had 5 great days with our son and so the doubt settles in, again. It's easier to move forward quickly when exacerbated! And, my daughter is at 97% with a few thoughts and panic attacks. But, they are much more manageable and don't paralyze her now.

 

As for the tissue, Dr. J said that tissue is the only definitive test around. He said the lab keeps that tissue for 100 years in parafin. He asked me to contact the lab and have them send him 5 slivers of colon or stomache samples. He would then have them analyzed for Lyme. I need to call and be sure I understood all that correctly. We were numb by the time we walked out yesterday.

 

Thankful for a place to gather info.

 

 

Welcome to the Lyme forum. I think most of us go back and forth between the PANDAS and Lyme forums.

 

My DD14 is on Augmentin XR for PANDAS and Azyth and Tindamax for Lyme. Also Diflucan. And she does IVIg. At first she was taking daily dose of Azyth and Tindamax but after a month we decided it was too hard on her stomach. She had diarrhea every day. So now we are pulsing the two (azyth 4 days a week bid and Tindamax 3 days a week bid) and that seems to work much better! I think DD is doing really well although we have not yet seen a reduction in her anxiety and OCD. I'm sure that will take time. We will explore possible tx for bartonella. The HD IVIg infusions have not made DD any worse. Too soon to say whether they will help with the remaining symptoms. Other PANDAS symptoms (bad tics and daily violent rages) stopped after the first HD IVIg infusion in 2008 and have not returned.

 

MY DD was scoped (from both ends) last summer but did not think to do tissue sampling for PCR. "If" they still have the tissue, would it show us anything other than what we already know??

 

Nancy

 

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing?

 

Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.

[kmom]

I have been wondering about cord blood. I banked both of my PANDAS/Lymes kids' cord blood. I wonder how I would go about testing that. I'd like to only take a partial sample. Wonder if that's possible. Where would I send it? I had planned to ask Dr. J at our first appt in 2 wks. Is the main point of testing it that I would be able to see if Lyme was passes in-utero and which specific bacteria/co-infections were there since birth? Hmmm, good food for thought! I wish a university researcher would take this on and save me the cost!

[Bill]

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing?

 

Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.

 

 

My son is also on Augmentin XR and Zithromax daily since middle of December plus Tindamax but only on the weekends. Actually more complicated than that as he was on that combo in October, then something else was tried but we felt that it was not as effective so went back to it. Our local doctor added minocycline when his OCD started kicking up last month. We noticed increased anxiety each weekend for the first couple of months (assume tindamax). Now, not sure we see much except maybe his eyes get that purple circle underneath by Sunday morning. When we asked how long he would be on the Tindamax, doctor said "Until you don't see a reaction anymore." Our next appointment is early March; I'm guessing it will be time for a change. IGIV is being recommended by Dr. B. but you will find that a number of other doctors believe that the immune system will eventually recover after the Lyme has been successfully treated. We are still trying to decide given the persistence of his OCD.

 

Do you know why IGIV was recommended for ds but not for dd?

[mommakath]

Bill,

DD had OCD / panic for 5 years before diagnosed as PANDAS. Once we did the steroid burst and Augmentin XR for a month, she was a totally new child. All the things she lost to the disease, she had regained. Dr. L was our diagnosing doc. Then, Dr. B found mycoplasma, treated it by adding in Zithromax for 21 days and she said she felt like her mind was even clearer. Her western blot IgG and Igm were both positive by CDC and ILADS standards but it tool us 7 months to get in with Dr. J. She is responding so well that IVIG is not called for. Some kids to respond to the burst and Augmentin and she is one of them. Thankfully!! She is blossoming with a few blips every now and then (OCD / panic) that are almost silly to mention in comparison to where we were.

 

DS followed same regime and bottomed out once steroids ended. He started rages and general chip on the shoulder. Anxiety was worse than ever - sitting outside school in panic mode for 5-6 hours a day, just trying to get in. CBT / ERP was not helping as he gets so bad he can't use his skills. Noticed slight improvement on Zithromax, but not major. Both kids have very low IgG immunity numbers. But, when DS is exposed to anything, he exacerbates. When he exacerbates, it's like it's worse than the last exacerbation. Then there will be a few days of that to a week or so of that and then this switch turns off and he goes back to being pleasant. Even when pleasant, he's not the happy go lucky child we had 3 - 4 years ago. It's like he's a volcano liable to explode any moment.

 

So, a long-winded explanantion for why she doesn't need it and he does.

 

 

 

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing?

 

Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.

 

 

My son is also on Augmentin XR and Zithromax daily since middle of December plus Tindamax but only on the weekends. Actually more complicated than that as he was on that combo in October, then something else was tried but we felt that it was not as effective so went back to it. Our local doctor added minocycline when his OCD started kicking up last month. We noticed increased anxiety each weekend for the first couple of months (assume tindamax). Now, not sure we see much except maybe his eyes get that purple circle underneath by Sunday morning. When we asked how long he would be on the Tindamax, doctor said "Until you don't see a reaction anymore." Our next appointment is early March; I'm guessing it will be time for a change. IGIV is being recommended by Dr. B. but you will find that a number of other doctors believe that the immune system will eventually recover after the Lyme has been successfully treated. We are still trying to decide given the persistence of his OCD.

 

Do you know why IGIV was recommended for ds but not for dd?

[NancyD]

Five great days is an excellent sign! I hope this keeps up. Just expect to some herxing.

 

Did Dr. J say if you could test for other co-infections using tissue sampling? There is no doubt in my mind that DD has LD. Question is, does she have other co-infections.

 

Nancy

 

Nancy,

Thanks for the input. We've had 5 great days with our son and so the doubt settles in, again. It's easier to move forward quickly when exacerbated! And, my daughter is at 97% with a few thoughts and panic attacks. But, they are much more manageable and don't paralyze her now.

 

As for the tissue, Dr. J said that tissue is the only definitive test around. He said the lab keeps that tissue for 100 years in parafin. He asked me to contact the lab and have them send him 5 slivers of colon or stomache samples. He would then have them analyzed for Lyme. I need to call and be sure I understood all that correctly. We were numb by the time we walked out yesterday.

 

Thankful for a place to gather info.

 

 

Welcome to the Lyme forum. I think most of us go back and forth between the PANDAS and Lyme forums.

 

My DD14 is on Augmentin XR for PANDAS and Azyth and Tindamax for Lyme. Also Diflucan. And she does IVIg. At first she was taking daily dose of Azyth and Tindamax but after a month we decided it was too hard on her stomach. She had diarrhea every day. So now we are pulsing the two (azyth 4 days a week bid and Tindamax 3 days a week bid) and that seems to work much better! I think DD is doing really well although we have not yet seen a reduction in her anxiety and OCD. I'm sure that will take time. We will explore possible tx for bartonella. The HD IVIg infusions have not made DD any worse. Too soon to say whether they will help with the remaining symptoms. Other PANDAS symptoms (bad tics and daily violent rages) stopped after the first HD IVIg infusion in 2008 and have not returned.

 

MY DD was scoped (from both ends) last summer but did not think to do tissue sampling for PCR. "If" they still have the tissue, would it show us anything other than what we already know??

 

Nancy

 

Okay....my fist lyme forum post. I'v been more on the PANDAS side of things. Two kids (dd12 and ds9) both with PANDAS and now with Lyme. Dr. J recommending Tindamax in addition to Augmentin XR and Zithromax for both. Then throw in IVIG for ds9. Anyone else used Tindamax and results? Also wants us to get tissue samples from GI procedures done 2 years ago and send them for PCR testing to him. Ds9 is serotologically (sp?) negative but he says he is not surprised. Anyone ever done that tissue sampling thing?

 

Thanks! I have a feeling I will have more Lyme related questions as we move forward. It all kinda scares me. It's that "invisible disease" doubt that I guess most of us wrestle with at times.

[mommakath]

Yes Nancy! Five great days is good. That's before starting any new meds and 4 weeks after DS took himself off Zoloft. As long as we are not around other people and not having to go to school and face real life, we are good. The stress of life is too hard for the little guy. Right now we are stranded in Hartford......lots of snow and ice and just waiting to get home.

 

Dr. J did tell us about herxing and told us how to handle it by adjusting dose and days we give. Actually, a little herx would help me know....just a little required. LOL!

 

We are doing coinfection testing and repeating western blot of DD. Blood drawn and sent out yesterday :-).

[NancyD]

Oy...I'm so sorry you are stranded in Hartford! We were in Darien at Dr. B's during last week's storm but thankfully made it out. Yes, do whatever you can to keep things calm and stress free. Epsom Salt baths work wonders. Both my daughter and I love these! I stock up on so much Epsom Salts and Hydrogen Peroxide -- the stores always look at me funny. I try and keep our home low key and soothing. And I maintain routines. Also keep organic and healthy. No additives or dyes. And lots of sleep! Hopefully you'll start to see a whole new child soon. Safe travels!

 

One more thing, we do daily bentonite and that helps a lot.

Nancy

[sf_mom]

They can test cord blood through Igenex. I am not sure though how its done once its been stored for a period of time. You might call them to inquire.

[NancyD]

Just dawned on me that I could check my DD's tissue from age 5 when she was first scoped. At least that would tell me if she had LD back then. If that's the case then chances are it was congenital and her ASD was Lyme induced. I'm going to email our pedi GI.

[sf_mom]

Nancy: It is almost scary to think they could type off of a sample from 5 years of age. I definitely think its worth investigating further.

[mommakath]

I thought the same but Dr. J said they keep those tissue samples in parrafin wax and (I believe he said frozen) for 100-115 years. Kinda creeped me out. How does he know these things???

[NancyD]

I hope so. I emailed my pedi GI. Hopefully I'll hear back soon.

 

I thought the same but Dr. J said they keep those tissue samples in parrafin wax and (I believe he said frozen) for 100-115 years. Kinda creeped me out. How does he know these things???