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Posts posted by mom24

  1. Has anyone heard of/used this as a detox for Lyme? I gave my DS a bath and he developed diarrhea this evening. I am not sure if it is just a coincidence (his brother just had a short bout of it).

    I'm also always on the lookout for C-Diff. He is on so many antibiotics that this is always never far from my thoughts even though he takes massive pro-biotics. Fingers crossed that he is better tomorrow!

  2. Second MDmom - these are generally used for different infections. Babesia is a red blood cell infection and you use anti-malarials as I understand it. Tindamax and Flagyl are extra-cellular abx used for cyst-busting lyme that has curled up and made itself an outer shell generally impervious to other abx. You pulse tindamax, generally on the weekends or maybe for a full week followed by a week or more off of it. I've never heard of anyone staying on tindamax on a daily basis.


    Going to add tindamax back into our routine in a month or so. We did it 18 months ago and had to back off because of severe herx. This time, we will start slower and see what happens. When we started tindamax, I freaked - some scary issues about cancer risks. But I also found research that said this risk was not universal - the studies showing issues looked at a specific population. I'll try to find it again. I ended up concluding we were ok taking it for a limited time.

    Thank you! Still waiting to hear from LLMD. The LLMD NEVER has discussed detox with us.

  3. i know i should know this. . . but, what actually causes the rash? i'm speaking specifically of bartonella - but i guess really any TBI. is it a reaction from the immune system that it is attmepting to rid of infection? does it show a functioning immune system or an impaired one? how does it come about? is it an attempt to rid infection through the skin? how do we rid infection anyway -- through urine and poop?



    why does it come about sometimes after someone is being treated? should we assume that the body wasn't fighting but it is a sign it is now?



    Not sure of the answer, but I will tell you that one of my DS has Lyme and Bartonella and was getting all kids of funky rashes before and during treatment (about 7 months). He is still being treated, but he does not get rashes anymore! Everything has improved all around! Take a look on Dr Jone's web site, it may have the answer :-)

  4. Hi all-


    So frustrated with meds here. DS has tried so many different things since he also has PANDAS--frequent strep and myco plasma infections. A new band recently showed up on th WB and he has been taking minocycline for about 10 months. One MD suggested tindamax, another suggested plaquinil. Anyone have experience with either of these? I am inclined to go with the plaquinil since I don't like what a trusted MD told me about tindamax.


    Any help will be much appreciated!

  5. Until recentlly I thought that IGG (meant gone) and that we only had to worry about IGM, but Dr B clarified this for me the other day. My DS 1 and DS2 both have VERY high IGG's and one had a creeping up to close to + number again( we have a chronic problem here). We are currently using antibiotics like augmentin 875 (for the big one) and minocycline... recently added clindamycin for strep (clinda and bactrum for the little guy)--- but it seems to really depend because some of them are 1st line vs second line chioces for MP and or strep. It is very confusing and seems to be highly individual. We are also treating Lyme too and the Dr just recommended a "cyst buster" --tindamax for my older son. Please post if you get any more info about xrays and myco plasma. We see an LLMD too if you want to PM me. It may help a lot since lyme and MP seem to frequently exist in tandem. Checking out the tindamax with the LLMD.

  6. All 3 of my children and I tested positive for Myco P. Igm, but all of our Igg numbers were also high. My husband tested positive for Igg only. With the exception of my husband, the rest of us have been sick, off and on, every month since March. It was really strange to me because everyone's symptoms would always creep back and were the same as they were the previous time so they seemed to have the same infection each time. No one had fevers, but my dd5 would always get a bit of a sore throat, a cough, and a clear runny nose (same symtoms each time). My ds5 would keep getting croupe and pedi diagnosed him with asthma and my ds8 PANS would get congestion that would take forever to go away and he had this weird morning cough that lasted forever. We found the Myco P. with Dr. T while doing routine bloodwork for my PANS son..it was quite a shock....family doc and pedi missed it.


    Dr T. thinks the Myco was ds8's trigger and put him on 30 days of zith, but only gave the rest of us 10 days. My husband got nothing. My non pans children finished abx about 5 days ago and symptoms are starting again. I'm not sure if it's just germ exposure at school or the myco symptoms creeping back up. I am worried that we didn't get enough abx to treat and the window of opportunity is closing. My thinking was that if my family MD saw the myco in an x-ray, she might be willing to give me more abx, but it still probably wouldn't be enough to erradicate the infection.


    No one has any unclear lung sounds going on right now but they have typical cold symptoms.


    What does it mean when both Igm and Igg numbers are high? And what is the treatment protocol for myco when it's in Igm phase? Does anyone know? I'm tempted to call Dr. T. to request more abx....he is pretty conservative though. I don't really know who else to go to, I just got appt with LLMD but couldn't get in until Jan.

  7. we have over 5.0 IGG MP here which is VERY high in our labs reference range. Still playing antibiotic roulette. Our Dr's office mentioned a physician who specialized in drug resistant MP anyone know who that is? I have always wondered about the long term effects of having a high IGG for MP. No doctor has ever suggested x-rays to us for MP, my kids are asymptomatic. ASH_- are your kids asymptomatic?

  8. Wish I could help. We had aetna two years ago when we pursued ivig and got nowhere despite the head of pediatric neurology conferencing with their medical director and two appeals. I see not much has changed. We ended up taking out a home equity loan and paying out of pocket. You might look into purchasing secondary insurance privately that is known to have a good track record with coverage. One thing that had changed is that kids with preexisting conditions cannot be denied benefits and despite the cost it is bound to be cheaper than paying out of pocket like we did!

    I hope it doesn't get to this. Fingers crossed that something will work. I hope that the treatment helped your child.

  9. Thanks. We have four under our belt and have seen tremendous improvement from a cognitive, attention, fine/gross motor and impulsivity. I know a MD who has a child w PANDAS and he said that he believes that there is not a cure but we just need to limit the distance between the peaks and valleys. I know that he is better that he was @ baseline 1 year ago.

    DH co switched insurance so we went from going every 6 weeks to 0. They have hired a medical reconnaissance person for us to try to find a way to get approval. If that doesn't work the next step is to appeal to the State of CA.


    DS has tested Igenix + again for the second time on 2 bands of the WB. He also gets strep and MP frequently.


    Dr J and Dr B will adjust meds when they talk next week. It is tough since his sibling has MP all of the time and they pass it back and forth. We need to work on approval for him at some point too.


    I was trying to explain this to a pediatrician in our group recently when I insisted on a swab. I have RA and when I get sick, my joints hurt. With my kids, it doesn't effect their joints when they get sick, it effects them behaviorally and cognitively. Still seems hard for this ped to get it. Anyway, thanks for the feedback!

  10. I have to blow off a little bit of steam here. I posted this topic a while ago and over 200+ people have read it and yet not a single response. There have been no thoughts or support- zero.( I have noticed that people have responded to other people that have posted similar topics regarding approval and IVIG). We had to suddenly switch insurance carriers and were well into IVIG treatments and were abruptly cut off by our new carrier. It has felt like our world has been falling apart seeing our child deteriorate without his treatment. We also had to cancel all of our child's scheduled appointments---which were difficult to obtain in the first place . I know we are not the only people with Aetna on here.......Again would have appreciated pointers from people who have been in our shoes.

  11. Hi everyone. The Doctor put my DS on augmentin and just added minocycline (100mg) . He has Lyme but also is treated for Myco plasma and strep. Are we treating everything? ( DD has been on minocycline for her lyme for a while. )

    DS ASO keeps increasing now back @ 400 (got strep on clindamycin and continues to increase on augmentin).

    I feel like we are playing prescription roulette :-(

    Any thoughts would be appreciated.

  12. Our pediatrician was initially very sceptical too. We also went through all sorts of testing and they diagnosed her with everything from a UTI to a conversion disorder.

    It was only after the Cunningham test results that her regular doctor came around. It also helped that saw not one but two Pandas experts who said she absolutely wasn't crazy. She now watches my daughter like a hawk every time we go there. If you're in NJ, I can tell you that there is one children's hospital you absolutely should not go to (It's in Morristown).


    This is one situation where you really truly need someone with experience and intelligence and who won't just allow the kid to fall through the cracks.

    We have a problem with our pediatrician too. I use them for minor issues and when I get the energy will find another ped. I was just told that if I have not completed most vaccinations (incl the chicken pox) on my child by the time she is 2, that I will have to leave the practice. It made me pretty sad that I have to argue with them about pretty much everything, but this latest pronouncement by the practice is probably the nudge that I needed to get out!!!! Good luck!!


    Oivay-can you recommend a pediatrician in the morristown vicinity that is PANDAS friendly? Thanks :-)

  13. I am thinking of bringing my 11 month old in for a sick visit tomorrow. She has been super clingy, refuses to nap, unless we are in the car, and my gut is just saying PANDAS, because of this and other behaviors. And well, as we all know, it just runs in families. My older two are more like PANS, no documented strep, so I am not even even sure if her culture will come back positive.


    And I just read that sometimes kids with stretch can pull and tug their ears. She has been doing that and I have brought her in twice since her last infection, but no ear infection.


    So, if it does come back positive, should I request Augmentin, or azithromycin? Is she too young for such strong antibiotics?


    If I had a child that age with positive Strep- I would opt for one time injection of Bicillin. Bicillin provides much better coverage for Strep. One time, knock it out and no meds to give for a week. Shot is somewhat painful but she will not remember it:) IM injection goes into muscle. Yes, they would prescribe Augmentin, Azithro, Pen VK, or Amoxil liquids in child that age depending on the outcome of testing. Just depends on provider's preference.

    Our Dr gave us Augmentin for our baby.
  14. Hey TMom,


    As luck would have it, he got strep throat two weeks ago, and again last Friday. He has been on amoxicillin 500 , and I think I will keep him on through Strep season now. He did not have a return of symptoms, but he has been a little more emotional, kinda depressed. May not have anything to do with it.

    Great news!!!! Wanted to PM message you, but could not.

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