Hopeny

We see her partner and are very happy with their practice

I'm trying to PM you, could you clean out your box

OMG just saying so sorry this is happening, was DD on Doxy? I know that can cause + Intracranial pressure. I am sorry I have no advice for you just want to tell you I'm with you

Richard Horowitz talks about multiple infections in his new "Lyme" book Why Can't I get Better? It's worth a read. My DD never had a + strep swab before she got Lyme and now we can't seem to get rid of strep. Lyme has wrecked her immune system and seems to have caused a chronic state of inflammation. Our LLMD's have all discussed IVIG at different points. In my opinion the important reason to have a real Lyme assessment is 1) the treatment course would likely be different than just strep and 2) where there is Lyme there are co infections which require different approaches. I'm definitely one who is always ringing the Lyme bell as it's concerning to me to hear people whose kids have fairly obvious Lyme symptoms along with Lyme specific WB bands but are told their kids don't have Lyme and to move on. I'm constantly exploring everything and I would encourage others to do the same. The trouble with Lyme and steroids as I understand is if they are used early on before treatment there is a risk of worsening the case. If its a new case of PANS, with no prior treatment, and there are Lyme symptoms, then it seems reasonable to get a thorough evaluation before trying steroids. If it's someone who has been on abx treatment, then it could be thought about differently. It's the same with IVIG, I'm not a doctor but from reading people's stories it seems that early IVIG treatment without addressing Lyme seems less effective that Lyme treatment followed by IVIG. My DD's former ped prescribed what I learned was an extremely dangerous and ineffective treatment for her mild asthma.(pre pandas) I was eventually forced to consult a pulmonologist and wow what an eye opener, I decided after that experience to only use a specialist to evaluate each specific problem. So it's the same as I recommend for Lyme, get an expert evaluation by someone who has seen/treated thousands of cases. Eventually as the PANS model evolves, I think treating doctors will need to gain more expertise around all of the typical infection triggers, just as LLMD's now are starting to better understand PANS. IMO, the treatments can easily converge...

I think you are in very good hands with Dr B, i think he is a brilliant and extremely caring doctor. Good luck

My ins calls and sends me letters, it's optional and I ignore them

Very timely thank you. We moved here recently and are looking for local care to add. Did you ever see Dr E formerly of chop now at DuPont?

For full transparency I am in the pro vaccine camp, however those three are all live vaccines. For my younger daughter I now get live vaccines spaced out and will never get flu must, we now get the killed shot. Could you ask her to try another abx like zith? Or maybe rifampin and zith if he doesn't seem to respond to augmentin? We never had tics but did see abatement of symptoms with abx in less than 10 days. Hang in there, he will get better?

Tu4 did your dd test positive or have symptoms of Bart? It's possible it was the biaxin too for our case but dd has taken that before with no issue

Just go really slow.,I'm not sure if it was a Bart or biaxin but my dd just went off the deep end. She's been off both now and slowly coming back . I didn't see any herx after a few days on abart so I stupidly added drops. The stuff is very strong

My dd is in a flare,,she described that she feels her brain is on fire, she is too young to be aware of that book. I since downloaded and read on my on my kindle. It's something that really needs further research

Nancy how do you test histamine?

I am considering using this lab but the triple draw is cost and logistically prohibitive. I wondered if others have used and if you have had a positive on a single draw with a negative test via conventional labs?

I would second what Philamom recommends. If you contact ilads.org they can give you a closer referral. We live in NJ but see an LLD in Connecticut. I'm not a doctor but personally I would not be starting Tindamax at this stage. IMO (again I'm not a dr) an old case that has barely been treated is not in a good position for Tindamax. Tindamax is thought to address the cystic form of Lyme, however many have posted that it can cause a serious regression as too much bacterial load hits the system. If you are just starting treatment then there is a likely high bacterial load. Amoxicillin did very little for us. In regards to protocol, this is best to let an LLMD guide you who can address what would work best in your case. There are pros and cons of each treatment method, we have used a mix. I don't think there is any one protocol that is a be all end all. Richard Horowitz has a new book out Why Can't I get Better which might be helpful for you. I wish you all the best.

Penny where are you located and are you able to travel?

I had explosive white patches on my throat from mono

Exactly

Try drugs.com to check for interactions

I have the same issue

Nancy we had no issues with Arteminisin. Literally in one week her pain was gone, after 15+ months of trying EVERYTHING under the sun including acupuncture, physical therapy, aspercreme, abx etc etc. We used the low dose form compounded with minute doses of ALA and EDTA from Hopkinton pharmacy. Do you wonder if the herbs in A Bart cause those symptoms on their own or if its really a herx? Honestly I am not entirely comfortable with these herbal mixtures. I am going to need to go research everything and see what I can find in Buhners books. Those symptoms/regressions sound severe, do you think it's worth it?

DD10 has been on Rifampin/Zith combo for year, other abx for an additional six months. We have been treating Lyme & co, strep & myco. Never had a + test for Bart, however had foot sole pain so we tried Rifampin and stretch came out in the crook of her arm on her arm a few days after starting (she is thin, BMI around 15 I think). Foot (heel, sole) pain went away with a compounded arteminisin but started up again recently and I noticed the marks had become more prominent. We started A Bart and NT detox and switched to Biaxin/Augmentin (she just had a sinus infection and pneumonia as well, and quite a lovely PANS flare to go along with). She has been on A-Bart for about 5 days and I'm like hmmm, no noticeable herx, perhaps she doesn't have Bart....I have read about the A-Bart challenge and was expecting a wallop. So tonight she tells me in a concerned way that she is worried she is going crazy because she has had the following for the past few days (she did not know she was starting a new med, previously I have given her other drops so there is no way she knew), forgetting who people are (her teacher, me - this was one of the symptoms 2 years ago when she was dx'd), nighttime anxiety thinking someone will break into the house, what she describes as OCD, needing to have her pencils lined up in class, needing to have shirts folded etc etc. I questioned her a few times about when it started and she stuck to the past few days. I will call LLD tomorrow but wanted to see what others have done. Seems like I should raise the NT detox drops and maybe go back to 1 drop of A-Bar every other day??? has this happened to you? if yes were you able to continue the protocol?

My non PANS daughter who as an immune complement system deficiency has had an ongoing infection in her mouth following a cleaning in June 2013. We have tried amoxicillin, clindamyacin, chlorhexidine rx mouthwash and a number of over the counter mouthwashes. What seems to have almost fully eradicated it was daily swimming in a salt water pool during a recent vacation. I was hopeful it would help and it did, her mouth almost fully cleared up during that week. Worth a shot.

I cannot seem to copy the text but there was a recent victory forcing insurance to pay for Lyme treatment, outside IDSA guidelines. Please view on the ILADS Facebook page for more details. This will pave the way for others to get reimbursed.

I am generally one of the few voices here that are pro vaccine, however I would NEVER allow my girls to get the HPV vaccine. I have actually read through the vaccine reporting data (VAERS) that is publicly available to use in coming to my personal views on vaccines. HPV vaccine was directly and immediately linked to serious reactions and death in the doctor's office immediately following the vaccine. I did not find this in my review for any vaccine except HPV. (outside of a rare allergic reaction). IMO also it's far better to encourage condom use to prevent STD's, I feel like this encourages risky behaviors.

We've had success with burbur from nutramedix