Kay

Great news!

No, this has been building for a couple weeks and I was waiting and hoping it was just a passing blip. I waited until I was sure it was more than that before I called the doc. The office is closed right now- but I don't think they'll contact him, because none of them understand how dire it is. Oh I see, I am sorry you have to deal with this. Seems so unfair.

Maybe just a ramp up because of something but since she has been doing so good won't last that long? I hope. Completely understand about the offices and trying to get through to the docs. Is there anyway they can just contact him long enough for him to call it in himself.

My daughter used Omnicef from March until June. She had good results on it steady improvement till then and at that point we felt she had gone as far as she was going to go with it because she began to feel a little backslide, we also had a tick bite, removed it right away but wondered about the stuff it injects so you don't feel them bite if that was responsible for her feeling a little off. We eventually switched in June to Augmentin xr which she is still on and has had good results. The Omnicef was good, did not hurt her stomach as so many of the others do, it did we think cause a little stomach bloat but it was not a pain at least in the stomach. I just looked up to be sure it does say to check with your doctor if there is a penicillin allergy This is from a website "tell your doctor and pharmacist if you are allergic to cefdinir or any other cephalosporin antibiotic such as cefaclor (Ceclor) or cephalexin (Keflex), penicillin, or any other drugs" I don't think it means you can't use it and I am sure your doctor is aware of this. Also it came in I think if I remember correctly like blue and purple capsules. We didn't want any added dyes so we asked the pharmacist if we could open and put in veg capsules and he said we could. So we did do that. Hope it is the one for you!

Well I see there have been quite a few views on this post and no postings so I will post I think it is a fun idea. I am in CT and would be willing to meet with others for a little R&R someplace, willing to travel, probably not fly but I am ok with driving someplace. I had talked to someone else on the board before summer about meeting up and I never got myself around to doing it. (sorry) Seem to always be too busy but if something was set up I might just be able to get myself there.

I believe I had Pandas at the age of 23 or so. Maybe it manifested when I was younger but did not have full-blown exacerbation until 23. Hard to tell and or remember back that far at my age now. I never had strep as I remember as a child. I do remember in the 5th grade though having been sick before school started that year, missing the first week of school and that year dealing with urinary frequency that carried into 6th grade and then just stopped. I was constantly feeling like I had to use the restroom and checking all the time. Also I do remember having a bad stomach for a short period of time that they could find no cause for. Those are the only things that really stand out for me as a child and I never gave it any thought until we started looking into Pandas for my daughter. I had strep twice when I was older once at 18/19 once again around 40 or so. (again hard to remember) I also had impetigo during high school. At around age 23 I began having problems with a tooth that eventually had to have a root canal done on it. By the time I had the root canal I was already experiencing severe anxiety and had agoraphobia. I suffered for about 8 years with the agoraphobia before I found my ND who told me I was not crazy and treated me with amino acids also treated for yeast at some point. I was at that point having ocd issues but again until I started looking into all this for my daughter I did not have any idea that what I was dealing with was ocd. I also went on the gluten free diet and had many food allergies/intolerances that I removed from diet. Most of my symptoms subsided…I was able to work and enjoy social events again. During this recovery I was having issues with my teeth again, they were moving and my dentist at the time didn’t think it was gum disease so he tried a few things to stop them from moving. In the meantime I became pregnant with my daughter and did not go back to the dentist till after her birth. By then I was told I had gum disease pretty bad was treated with surgery and antibiotics when my daughter was one, the surgery and antibiotics that I got for about 10 days each time went on throughout the year as each quadrant had to be done. During that time I did feel a small relapse of my anxiety/agoraphobia not nearly as bad but did balance out again with the use of amino acid and treatment of yeast and of course who knows what the antibiotics were doing. I would not have known to call it Pandas back then. I never could understand the sudden onset of the anxiety/agoraphobia. It happened one day while out with my friends and got progressively worse over the next couple of days. I was a happy girl that day I woke up and by evening I was terrified. So adult onset? I don’t think so. I think more likely for me there was something else at play when I was younger and possibly it was because we think my dad had rheumatic fever when he was 15/16 years old. He died at 52 of a heart attack. I would say I was predisposed in some way and it just did not explode until I was older. I would say I am well and have been for the past 20 plus years. I seem to react to any illness in a normal way, colds, etc. I feel like I have a good immune system, try to eat well and take precautions to keep the viruses and germs away. I will say if I don’t eat well, and I mean going way off my usual diet as far as eating lots of sugar and or not regular meal times etc I think that taxes my immune system and I can fall back into a little anxiety and or ocd (mostly in a thought process). I notice it right away and make sure I eat clean again and seem to be fine. I think there are weak spots in my system still after all these years and who knows maybe because I was never actually treated for Pandas what was left. Perhaps once I move Em through all this I may look into myself again.

Sleep is always an issue when we are NOT on antibiotics. Not too long ago we tried going off the antibiotics and for the first few days we were good but as the days went on it was clear that sleep was an issue among other things. She would fall asleep later and later each day finally at about 14 days off she was falling asleep at 5am. I watched as we put her back on antibiotics each day get better, it took about a week for her to finally get back to a normal pattern of sleep, I watched it increase a hour or two each day.

It has also been said that honey from your local area is good for allergies. I have heard a teaspoon a day and also 1/2 teaspoon a day on this. It must be local though to you area. I had a guy in RI try to sell me honey from CT up around the Fairfield area and tell me it would do the same, I don't know about that. Quite a distance there.

Thank you wornoutmom for the information, this is all really helpful. Kay

So excited for you all! I love reading this post!

Great Tired Mom, will be interested to see how it goes. This has been nagging at us for awhile as you can see by post I have made. We have drs appointment on Monday and I think there is not a problem getting the Biaxin or something that will treat I just was not sure on what dose etc. My daughter has high IGG only and has done well on Augmentin xr 1000 2 x day but still a few things left we would like to clear up and hoping this might be part of it or wouldn't it be nice if it was all of it! Kay

thank you Julia!

For anyone whose children have been on Biaxin for treating Mycoplasma P could you chime in and let me know what dose was used, how many times a day and for how long? Any other information such has age and weight of child would be helpful too. If you were treating Mycoplasma with another antibiotic, which ones and same information please as far as dose, times a day and how long. Finally, I know I have asked this before but if you could answer again in reference to the above questions, if you thought you saw improvement. Thanks so much. Kay

So nice to hear!

Here is my 2 cents. I understand the frustration of thinking you are all set with the treatment you are doing and then you read a post and there is one more thing to think about and one more doctor to contact and one more blood test to be run. It's unsettling, BUT, without all of us posting our different ideas and our different treatments and different causes, where would we be? If someone had not been brave enough to post the first Pandas blog, I would not have found this site and the doctors we were dealing with were not thinking Pandas ever and I doubt it would have ever come up. I know it can be confusing and I feel your pain but like others have said. I read it all, I pull from what I think fits our situation and then I bring it to our Docs and say, what do you think? I had thought way back Lyme for us when this all started. She was tested twice with negative results (quest) (we live in Lyme in the woods, yikes!) So I put that away and went on with the Pandas because she fits that so well right up to the exposure of strep from a friend and her biggest exacerbation of all. She has high Igg Mycoplasm Pneumonia and I am still battling with trying the Biaxin for that. I have picked brains all over the place (on here) trying to see if we should do it. I get yes, yes, yes from everyone and it has still been months before we think we have finally decided to try that as well. Same goes for the Lyme. I finally got the test kit the other day, and here is the great thing about this kit. You call up and order what you want they send it, there is no money sent until you send it back, so if we decide for some reason not to draw for that there is no loss of money, you can wait and decide for when you are ready. We are right now at about 70% with augmentin xr, most days are good. We still have a ways to go, is it the mycoplasma? Could it be the Lyme? I will only know once we test and try treatments. Afraid of messing with stuff that is why it has taken us so long to decide to do something different. I thank everyone here for all their post because like I said before without them we might just accept that 70% and I do not want to. A word about post that are in favor and or not in favor of anothers post. That is why we are here. We learn from the post that make us question one way or the other. One person is confident while the other may not be and ask the questions the rest of us want to but can't. So ALL post have a purpose in my world.

I just wanted to note I did call Igenex and also emailed them concerning being on antibiotics and was told when I called that as long as it was not urine or PCR test it would be fine. The email sent to me was this: The Western Blots, and IFA’s are all ok . Hope I have the right information, not planning on going off of antibiotics as it causes a backslide for us.

In the beginning I was always back and forth between what was something not quite right and what was normal behavior for a teenager. I always said I thought it muddied the waters!

I finally had my appointment with my doctor in June, after being absent for 3 years, did the whole lot of blood test and was happy to see numbers that I thought for sure were going to be bad. Have a follow up in Septmber, my daughter has an appointment the same day and then I am off to the dentist ( had cancelled my last one) Important for us to be well!

I didn't even give it a thought when I marked that we were going to run lyme test. What I was refering to was the Igenex testing, we have already had a negative test by Quest. I guess I just assumed that we were talking Igenex, sorry.

Lymenet.org will send you a list of doctors in your state...They do ask that while using their discussion board that you do not post the name of the doctor there ever for the doctors protection so I guess we should do the same here. I see a lot of people send pm's when there are request for Lyme dr. name following the same protocol.

Enjoy your vacation!!!! We are still laughing here! I think we all feel like that.

Thanks Philamom will do...and to the person (sorry I can't see your name now that I am posting) who asked about months and months of augmentin xr my daughter is on the same xr for about 2 months and other antibiotics since December. I called the lab today and the said only urine test and pcr test were the ones that you should not be on antibiotics for. I asked numerous times that it was ok to be on antibiotics and do the western blot and she said yes, she probably thought something was wrong with me, I just wanted to be sure.

Thank you Justine for the Info I will take a closer look at the test they offer and your info and go from there. I have to call my ND too and get an appointment for a draw as well. I can order the kits right? They just have to come back with a doctors order and payment or you pay for them upfront? Sorry for all the questions.

I did call and was told like you said Justine that only if you are doing pcr and urine test does it matter. So picking all your brains, what test do you think should be run? I was going to repeat what we had done with Quest which is just the Elisa plus western blot. Anything additional? She does show the high titer for Igg Mycoplasma. Thanks for all who posted. Kay

Thanks I will call them tomorrow. I am just hoping they will be able to do something while on the antibiotic.