Hopeny

Dd is about 95% after >1 year of treatment, combination of supplements, antibiotics, and Samento, We are dealing with Lyme, Bart, Strep, Mycoplasma and MTHFR 677T one copy, and an immune issue called Mannose Binding Lechtin Deficiency (basically her immune system has no quarterbacks to hold virus/bacteria off before the defense kicks in). I added 1 drop of Banderol because I have read great things about the Banderol/Samento combo and on the suggestion of our integrative doc instead of Cumanda. I noticed she started to have a daily crying bout, however we have seen this herx before and it was pretty mild so I plowed through. I really thought we were just about out of the woods with Lyme.Then I took her off abx late last week. Last night she told me not to read her diary so of course I did and there was a one pager from 04-09 talking about suicide (interestingly, decent handwriting and not PANDAS scrawl that we had last year). Have not seen this in about a year!!!!!! Two subsequent normal entries, from 04-09 and 04-10. Happy today as usual, skipping and nice to sister. of course I have discontinued Banderol and put her right back on the abx today, and will monitor entries. Ugh! Will this insidious disease ever go away?

Thanks everyone that is so encouraging. I'm hoping with Lyme treatment that will improve. That result is after a year of zith

Dr shulman is very experienced but only uses one protocol which may not work for all. I believe there are YouTube videos about it

Kerry makes a good point about Dr B, he's our only insurance doc and I think he's amazing. I'm not sure what his wait list is now but it's a good idea to get an appt even if its far away.

Hi I am sorry you are going through this. Some of the symptoms you describe are consistent with Lyme disease and bartonella: inflamed heels, fatigue, joint pain, chest pain are big red flags. Most doctors are not experienced/familiar enough to diagnose/treat Lyme and co infections. I would get a cardiology workup ASAP as Lyme can cause heart block. Also sorry to tell you it will be almost impossible to find a trained doctor who can diagnose and treat Lyme and co infections. I will pm you a couple if names today but they are not on Long Island. Lyme and confections can co exist with strep, mycoplasma and other infections and go under the umbrella PANS. The heel pain is an especially specific symptom for bartonella which would warrant seeing a specialist. Dr T is seen by many on this board but is not trained/experience in Lyme, I understand he is very knowledgable about strep but we don't have any personal experience as we see other doctors. You may end up needing a team of a few doctors. I would also say it's a good time to put a financial plan together. In my case I borrowed from my 401k and credit card loans. Not ideal but Iits what it took to get DD better. Insurance doctors had me standing by helplessly watching my then 8 yo deteriorate before my eyes. They proposed psych meds and pain medication. DD is recovering at about 95% without either. The costs ran between 15-20k the first year. This year is considerably less. Voltaren is a topical anti inflammatory, you may want to ask your doctor if this would be an option for your daughter's heel pain in the interim while you seek treatment.

I don't have any answers for you but I wanted to offer moral support. I have the same questions as you. Non lyme literate ID doctor stories that I have heard seem to always go straight to 4 weeks of IV abx. It seems this does work at times. I feel its worth a try. . When I told Dr J (seeing him for 3 YO) about older DD with chronic Lyme his first question was has she done IV. Please post and good luck, I know this is a very hard decision.

My niece lives out of the country, has had PANS symptoms for maybe 8 years and finally got dx'd about two years ago. Has constantly high ASO (>400). Last summer had a test come back indicative for Lyme. I was emailing my brother scans of her bloodwork that I picked up from Dr. B last summer as she is getting ready to see Dr. O', and I noticed something I missed before. ANA Titer: POSITIVE NEGATIVE ANA Titer: Diffuse Pattern Titer 1:80 ANA screen is under abnormal summary. Read a but on line and started getting a bad feeling in my stomach. I don't think this result was ever discussed with my SIL. Anyone have experience with this? My niece has been suffering for years, tics (severe facial and others) , bad ocd, rages, joint pain, psych issues, sensory issues from a young age.

For Lyme and bartonella testing infectolab in Germany seems to be very knowledgable

Thanks Philamom how often do you give it?

Our integrative recommended charcoal or burbur for rages, DD has trouble with capsules so I've only used burbur (ordered from nutramedix on line) glad charcoal worked for you!

My friend's DD8 is starting up a new flare, OCD and anxiety. She is currently waiting for Drs appointment with some reluctant support from ped in the interim. ASO/Dnase was normal but Mycoplasma was +. She was + for strep six weeks ago, took Augmentin. I recommended she use Motrin but as we have not used regularly was not sure what the dosing schedule was. Ped gave five days of Zith but unsure how to treat Myco, I recommended she discuss combo of Augmentin and Biaxin which worked well for my DD. What Motrin dosing schedule do you find effective?

while its hard to know exactly what's working, DD has made huge strides since adding Enhansa, NAC and Quercetin. I suspect the Enhansa has helped the most as its been the most constant of the 3. In addition, DD's mild asthma is better. There was a room that was setting her asthma off at an afterschool activity and it no longer gives her a problem. I would like to take it myself but waiting till finances settle Enhansa even seems to be accepted by the mainstream community as my insurance covers it (non formulary though).

Thanks all. Based on the extracellular issue, it sounds like I may need to save Cefdinir for when we finish Rifampin, I would definitely like to try for DD9 as everyone seems to have very good results. My 3 yo is on Cefdinir/ZIth - I really hope it has done the trick for her, I'm planning to take her off when we see Dr. J. next week,

I am thinking it's time to switch it up from the Zith/Rifampin combo. Dd has not been on Cedfinir yet and per drugs.com it seems ok with Rifampin. Anyone try this combo? I don't hear it mentioned very frequently. I am hoping to have this kid off abx by the end of the summer. My goal of doing this in June is not going to happen. I've started using Samento and just received Banderol to try to wean off abx and stick with naturals. I haven't figured out yet how to manage Strep in September if I am successful in getting her off abx but I supposed I can just treat flares/exposures, will cross that bridge when we come to it.

So sorry I would agree to keep her home until you get through the worst. My daughter missed 22 days during the second half of second grade and nobody said a word, I just called her in and never even gave a doctors note. In fact the nurse herself told me it didn't matter. They knew she was sick because they saw it and even when she went she was ending up jn the nurses officr anyway. I think calling the school is a good idea .

One thing that stuck in my head from the psychiatrist is the more you can maximize the good times and happy memories the stronger the recovery. If your son wants to go I take that as a very healthy sign and would support with precautions. Maybe this is a chance to try to work thru food issues like if you go you need to eat etc. good luck.

Ps we live in ny some kids wear crocs with socks...will that work?

Were you able to try Burbur to see if it helps rages? It really seems to work for us. Also I can't recall but are you using mthf? I was giving DD way too much and it seemed to exacerbate rages. Good luck I feel for you. Just keep in your head that this will be the worst part and you are making it better.

Were you able to try Burbur to see if it helps rages? It really seems to work for us. Also I can't recall but are you using mthf? I was giving DD way too much and it seemed to exacerbate rages. Good luck I feel for you. Just keep in your head that this will be the worst part and you are making it better.

we're not out of the woods yet but last year at this time she was praying to die (at age 8) and she confided to psychiatrist she was contemplating jumping out of a third floor window. So thankful to the parents here who have supported me, given me guidance and our amazing doctors. I know we have a long way to go, and we still have bumps, but that just made my heart jump in a good way today.

The last tine we tested DD after six months of abx nothing had moved. She's been on rifampin so am curious if that has helped. I will post the next time we get results which shd be end of April if it made a difference. Someone once posted a paper on using iv abx for myco but I can't recall which abx. Sorry and I really hope things improve

Has the family been tested for Myco? When we tested our family we found out that my mother is probably the carrier. Similarly, my niece has had PANDAS for years, during testing we found out that her mother is also a carrier.

I'm like you, I'm scared of Tindamax. I am using NAC which I understand hits biofilms, and DD is on Rifampin, which I have also read hits the cyst form. Finally I am starting DD on Banderol and she is already using Samento, Eva Sapi demonstrated that the Banderol/Samento combo hits all 3 Bb forms, however it was in vitro only and nothing has been demonstrated yet to work in vivo. That is important to be aware of as Erethroymcin (badly spelled, sorry!) works splendidly in vitro but does not work at all and is not used in vivo. I'm not planning to try Tindamx unless someone can convince me otherwise.

Kara if you request "report all bands" on the Stonybrook requisition they will do so. If the box is not ticked off they will only report the standard CDC bands. IMO Stonybrook is a good alternative to Igenex and they take insurance. The rub is that they only do Bb, they don't test for any co-infections. Stonybrook tests for many strains as does Igenex, and also has a lot of experience with testing.