Suzan

Dr. Jones article confirms what Wendy said from Dr. Corson... http://www.personalconsult.com/articles/drjonesapproach.html There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93. Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

My dd did not do well on augmentin and was removed within days. She became confused and listless and felt like she could not breathe (although she was breathing fine). At the time, we did not know she had lyme and in retrospect we realize she could have been herxing. My dd does very well on zithromax and was the best on a higher dose (500mg daily, she is 9 and 80 lbs). HUGS! Susan

I'm looking forward to reading this article. Dr Fassano is a great advocate for Celiac and will be coming to the Charlotte Gluten Free Expo next year. I am looking forward to it more than ever now. I wonder if I can corner him and pick his brain about pandas and lyme! Susan

We have seen the chiropractor since my girls were little (2-3 yrs old). I would say it was helpful for sure. But not the kind of help that a chiropractor might think (I feel some tend to claim they can cure everything). It has helped their pain and I am sure it helped with their overall progress. I can't say what it would have been like if we had not been going. Our chiro has been a huge support person for us. Susan

I have heard it was (I thought my LLMD told me) and I see references to it on forum's and such, but I cna't find anything that says it really is. s

My dd9 has this issue sometimes and I have wondered why. I never thought of detoxing but I think it's a good thought. I assumed she was going through some hormonal change. I have also noticed that she has more body odor than before. But she has not started her lyme treatment yet, just her pandas treatment. Susan PS.... how many people smelled their own hair after reading this?

I agree with the others, it sounds like pandas. The pain makes me think that it would be a good idea to get the Igenex Lyme test's #188 and #189 (western blots) to check for Lyme. My dd's have pandas and lyme and my older dd has very bad pain along with her other symptoms that we could never explain. HUGS to you and your sweet boy. Susan

It was our neurologist who said that sometimes after you get one of the viruses, your body does not clear it properly and it can cause these neurological symptoms. In the presence of high titers and symptoms, he will treat to see if it helps to clear the virus. He tested for HHV6 and the other herpies viruses (HSV...??). Susan

Thanks Nancy! I have added the flagyl this weekend and although I have symptoms, it's not as bad as I expected (KNOCK ON WOOD). I have migratory pain and tired again and crazy weird dreams. I will be glad to stop it tomorrow and hopefully my totally clear head will come back! This week I continue to increase my stage 1 medications. I should be up to full dose in 1-2 weeks. Good luck with your test results too. I look forward to hearing them. I never would have thought at the beginning of the pandas journey that I would end up diagnosed with lyme too! Susan

Our immunologist was interested in learning about pandas and has several pandas patients now. She works in tandem with our neurologist. For us, she kind of leaves most treatment in the hands of our neurologist but I think her input is worth it. She also has us on allergy shots. Controversial on this board about whether to do them or not but for us it seems to be OK. We have TONS of allergies. Since we also got our lyme diagnosis, I'm not sure how involved our immunologist will be. We will see....

I do agree that it is important to rule out any possible disorder but I have to agree with phillypa that auditory hallucinations are a part of PANDAS. My dd has PANDAS and Lyme and has experienced both auditory and visual disturbances that get better with antibiotic treatment. Also, sleep disorders are a symptom of PANDAS too. I think Bipolar and pandas symptoms can look very similar.

We are (although I don't do a super great job of keeping the cf completely out. That's a hard one for me!). My dd's show gluten and dairy intolerances on blood tests. They improve a lot with those foods taken out! Susan

Thanks! Just 3 days. Took 1 tonight, then 2 tomorrow and 2 on Sunday. If I feel Ok I'll take one Monday am and then that's it for the month. Susan

I like the idea of epsom salt baths or foot soaks. I'm going to see if my dd's will sit with me on the edge of the tub and we can all soak our feet together. I'll need it this weekend, first weekend taking flagyl and I already feel a little funky. Also, drinking lemon water throughout the day is suposed to help.

Is he on antibiotics now? My dd9 had voices in her head with her eposodes. Staying on a high enough dose of zithromax helped. Also, calming amino acids, 5-htp, benadryl, melatonin and motrin helped us too. I am sorry you are going through all this, I know it is hard!

There used to be a generic. Does it still exist? My dd was on valtrex for 6 months and I think it helped. It was for a high HHV6 titer. Our LLMD just told me that valtrex would not help for that. Either way, I think the antivirals did help. Does your doc want to start for any specific virus or overall pandas therapy? This is what my dd will be taking for lyme treatment soon. Hydroxychloroquine(hye drox ee klor' oh kwin) or Plaquenil Hydroxychloroquine is in a class of drugs called antimalarials. It is used to prevent and treat acute attacks of malaria. It is also used to treat discoid or systemic lupus erythematosus and rheumatoid arthritis in patients whose symptoms have not improved with other treatments. This medication is sometimes prescribed for other uses; ask your doctor or pharmacist for more information. Susan

Our LLMD is going to work with our neurologist to discuss IVIG's for dd9 and believes that IVIG may be in her future sometime since she had good improvement with the emotional aspect of PANDAS (or lyme) with IVIG. But we won't be doing that for a while after she gets through the lyme treatment. I think, if I understood correctly, we might to IVIG after the lyme treatment is over if there are lingering symptoms. I may be reading into what the LLMD said since we did not discuss it at length. Susan

Nice! Sounds like you have a good protocol and a great LLMD. Very interesting about the virus infections. I can't wait to get all my test results. She ran a lot of tests. Thanks for keeping us updated. susan

Thanks Mary! I heard from someone who said the flagyl might make me herx almost immediately. I'll be prepared for that, I hope anyway. Ugh! Tonight, headache and backache but a nice clear head. That is nice. Susan

After 4 days on Nystatin, Diflucan, Questran, Plaquinil my brain fog and memory are much improved and my fatigue is much better too. I almost hate to start the abx! Could it really help so quickly? Maybe it's a placebo affect. I'm afraid to take the flagyl this weekend since LLMD said to try to get 3 days in. What will happen? Susan

We did the #188 and #189 at our LLMD's request for $200. I was super lucky and was reimbursed $120 each by our insurance. Based on our clinical evaluation, she felt we had very low possibility of co-infections. So I am glad to save that money up front for the co-infection test. We will see what treatment brings us on all that. Good luck! Susan

I emailed the author of "The Cell Phone Poisoning of America" and she recommended Gia products. It did not seem like she was just plugging the product but I know I've always been wary so it's good to hear you think the product is good. I can't afford to get pendants for me and my two kids so I wish I could get a recommendation for something much cheaper. Susan

Wonderful! You are so lucky to be able to see Dr. C! I am so glad you have such great information and have so many ways to help your son and ultimately yourself too. I am very interested in EarthCalm as I have been waiting an EMF protection product but they are either so expensive or I don't know whether to trust the product or not. I will check it out as I am very affected at work. Susan

I live in Charlotte too. We see Dr. Corbier as well. He just got the new doctors in last week. Hopefully he will have more time now for all of us which seems to be his main point of interest! He has shown interest in working with our LLMD too since we are all recent lymies in addition to PANDAS. s

Our LLMD just told me no way for the flu shot too. s