momofgirls

Hi Colleen My daughter had lines that looked like scratch marks...they were not raised but somewhat dotted lines going in different directions. I took pictures of it and showed it to Dr. Jones. He said it looked like bartonella.

wow this is a very interesting video. I like how they feature patients with such different manifestations. Something everyone should see.

Emerson I am so happy that you are under the care of a good doctor. You should be proud of yourself. Things may be bumpy for a while as you know but I really think the end result will be so worth all the hard work you have put into this. Hang on for the ride... You can do this!

Ok so I know you said you didn't think your son had lyme but...you may want to have him tested. Many of us on this forum have uncovered lyme as an underlying chronic infection which triggered what you know as pandas or pitands. Especially given the fact that you have lyme and the area in which you live is highly endemic. Many children with lyme manifest with neuropsychiatric symptoms yet do not seem physically ill with classic lyme symptoms. You must be considering seeing dr bouboulis in CT? He is fine for testing and can help rule out lyme but it might be a good idea to make an appt with an llmd to have him checked out. Latitudes also has a lyme forum with parents dealing with lyme induced tics and OCD. Check that forum for more information. Keep in mind these children do flare with strep as any child with pitands...chronic or acute infection of any kind can trigger a response. A lot of us have learned, its not just about strep for some kids.

Emerson, I respectfuly disagree. I am not suggesting that you have had strep this whole time but are you not positive for lyme disease? An infection like lyme would prevent you from going into remission. I don't know about getting to 100 percent either but a longer period of remission may be attainable without a chronic infection like lyme, mycoplasma, bartonella etc... Also I think sometimes these kids do carry chronic strep even for years if they have something like lyme making it harder to clear. Many kids on this forum have had elevated titers so stubborn to resolve and later went on to find lyme.

Oh gosh Melinda I am sorry. So are you saying she recently developed a bullseye rash? Maybe this is a good strong herx. I don't know. I know you have been worried about strep lately but she is on a lot of abx. I remember you posting about a rise in titers recently. I am hoping that she is well covered and wouldn't deveop an infection and that maybe this is a herx. Don't have a lot of advice except maybe call Dr Jone's office in the morning. The herxes can be very rough sometimes. I am hoping this is what you are seeing. Kim

Just my opinion but she must still have an infection with those kinds of tics. Were not talking about a little eye twitch as a residual symptom. I remember your daughter's igenex labs and as I said before, I think a good lyme doctor can help. If you need confidence to pursue lyme then they could bring it out with higher doses of abx for a bit then retest. The other thing as LLM as mentioned, imune complexes can hide the antibodies for which the western blot test resulting in a false negative. Has anyone tested for these?

Fixit I would stop the samento untill he is stable because you don't know what is causing the increase in tics. The samento is very strong but if he has c diff you want to know that too. Maybe wait till you get your labs back on the clostridia before starting lyme stuff. Try giving lots of bentonite like 2 cups tonight! Do it all weekend if you can. Keep us posted. thanks phila..ok will give more alleve...no samento till sunday...maybe start back there at 3 drops bid.... thanks again..his b=day is monday...

The number is 203-772-1123. You have to leave a message and his office will call you back shortly.

Emerson, I am really happy that you are getting ready to begin treatment. So next week is big for you. Please remember that yes you will herx but it is a sign that the treatment is working. It is scary at times but try to keep up with your detox. That will help. You have had lyme a long time right? So be prepared to go the long haul. It will be bumpy but over time you will see a better trend towards healing. During your appointment ask lots of questions about how to begin treatment...adding things slowly or in a certain order, especially the herbs in combination with antibiotics can knock a good punch. You may want to go slow and if things are going well then you can guage and add more with time. Bring notes with your questions written out because I find that once I am there, I always forget stuff. Writing them down will help. Good luck with your trip. You are such an amazing girl. I read your post over on the PANDAS forum tonight too. You have so much to be proud of...now go get well. Kim

I couldn't agree more with kmom. Dr J also told us not to bother with the 31 epitope test. He doesn't like it.

just a little caution on the cipro...if you use it do not give ibruprophrin. They are not to be used together.

So glad you had a good appointment with Dr. B. Did Dr. B suggest testing for lyme? In my opinion, this should be done first.

Wendy, the information you posted about ivig and lyme is what i have learned as well...indicated for neuropathy and i think usually at a low dose. Neuropathy is not an autoimmune disease, obviously, so i think the low dose is said to have some immune boosting effect as well as anti-inflammatory properties. However I wonder sometimes about the high dose ivig being used for lyme induced tics and ocd. Just something I have been thinking about recently but in theory PANDAS children receive high dose ivig to suppress the autoimmune response to an infection (possibly post infection). If chronic lyme and others are still smoldering, then I would think that using repeated high dose ivig's would be contraindicted as are steroids which also suppress the immune system. I do believe our children have an immune dysfunction in response to the lyme but treating it as an autoimmune disease before erradicating infection might do more long term harm than good. This is just total speculation and I understand parents are all seeing different results to ivig with and without lyme. I wish we knew why the results are so varying among all the kids. It is a mystery.

Our doc said sometimes it is helpful to start a little treatment before testing. He started me on samento initially and I felt a really strong herx. The dose is 15 drops twice a day and I felt it after only a few days. You could start with that?

I left a comment too. Any other creative ideas as to how we could get a message to the mother? I watched it last night and couldn't sleep. Maybe I am completely biased about the whole thing but there is no way that boy was just "mentally ill" something has to be causing it.

fixit, in the past when your son had clostrida, did he have other GI symptoms? Lose bowel movements or pain? Is there change in color to his stool? I am not really familiar with clostrida so forgive me if these are stupid questions. Does he have any of the other classic symptoms of clostrida right now...other than the increase in tics?

PhillyPa No! You should post what you have learned. Always should feel free, I really do want to hear all sides because as you said so much is unknown and even debated among the 'experts'. That is how we learn. There is even much debate between the pandas doctors as well. We've all discussed the benefits of IVIG against pex. We have all compared notes on IVIG dosage, steroids, and antibiotics etc. The same should be true regarding lyme. Our doctors have even debated these issues with each other. With our childrens best interest at heart, we question everything. We as parents have to ask these questions. I just felt the need to point out that most doctors researching and treating lyme do respect Igenex labs. Parents on this forum are on the same team.

Hmmm interesting. PhillyPA would be referring to Dr B.F. From Columbis University? Just curious because my daughter is a patient of Dr J's and Dr. B.F. Is doing a research study currently on lyme induced OCD and tics in children. Dr J sent my daughter's labs to him to be included in this study. Research only, but my understanding is that Dr J and Dr BF both prefer tick borne labs like igenex to truly diagnose lyme. My daughter was included based on her IgM positive results run by Igenex. So if this is the same doc then he must have enough faith in igenex to include a patient like my daughter for his study.

I am sorry guys but I had to laugh a little when I read all of this moaning going on! It really stinks doesn't it? My daughter was about 90% last spring before we started lyme treatment. She had what I called firework tics throughout the summer. I was dying! She really is so much better now but it is still bumpy at times. Hang in there and try to keep a sense of humor about the whole thing. Maybe I have a little dark humor inside but it gets me through the rough times. It will get better and while I believe yeast always plays a role during antibiotic use, you guys are experiencing real herxing. It is miserable but it is a good sign. What doesn't kill you makes your stronger...or drives you to drink!

Dee Dee, I understand the need to find relief when your child is struggling but I really think Elizabeth makes good sense in that it is so important to rule out chronic infections before going this route. Others may disagree but I can speak from personal experience in that steroids gave my daughter relief last year this time. We did them 3 months in a row. I thought they helped but soon after finishing the taper symptoms returned and even stronger. Ulitmately 10 months later my daughter was diagnosed with lyme disease, bartonella, and mycoplasm. I wish I would have ruled out underlying infection because it is generally accepted by any doctor treating infections that steroids do long term harm to the underlying disese. We THOUGHT we had ruled out lyme untill running the IGENEX test which was positive. I hate to push everyone down the lyme path but sooo many kids are coming up positive and benefiting from treatment, I think it is worth looking into prior to doing any immune suspressing treatments.

yep ha ha...deep leg pain. Sometimes in the thighs, hips, and lower back too! I felt like I had been seriously working out and lifting weights. I feel like the herxes can kind of build and sneak up on you.

Betsy, I sent you a private message.

Glad you are getting the support you need worried dad. Hope its ok I used your son's story as an example its a good story and I hate to see parents get discouraged early in the game.

Welcome to the forum. I think its great that you are going to see Dr Bouboulis. He will order a ton of lab work and will help guide you in your next steps. I also think its a great idea as keithandelizabeth suggested to browse over on the lyme board and definately read up. Can I ask where about do you live and how did you rule out lyme?There is a great post started by michaeltampa that includes a talk given by Dr Klinghardt. There is help for your boys and you've come to a good place.