Dedee

Whoo-hoo. So glad to hear your wonderful news. We use Mino as well. We are treating Lyme, Myco, and bartonella. It crosses the BBB so works better than some of the other antibiotics. I pray you continue to see improvement. Dedee

Well there you go. Don't you just love main stream medicine? Has never helped us not one little bit. I applaud your out look. Stay in the moment and be glad you have been blessed with good common sense which is more than most physicians have. Dedee

Lithium supplement has been wonderful to help stabilize my daughters moods. I give it to my sons and I also take it. Dedee

My daughter just started valtrex and she is getting small bumps on her face. Wouldn't call it acne really but very small red raised areas. Dedee

qannie47, Tried to pm you but your mailbox is full. I was just curious if you found your GF oat flour on line? If so, can you share the site? We aren't GF yet, but I would like to get everything in line before we start so that I have a good menu to choose from. My kids are very picky. I'm sure you understand. Thanks. Dedee

My daughter also has extrememly high HHV-6 titers. I suggest you do some reading on Dr. Montoya from Stanford. He has done several studies on CFS and HHV-6. Also, he uses the drug Valcyte instead of Valtrex and gets statistically better results. Our LLMD wanted to start with Valtrex first because he said it had fewer side effects, but said we could move to Valcyte if we needed to. Dr. Montoya's work is very interesting. Dedee

Just my experience.....my daughter had mild PANS symptoms. I was basically in denial that this was what she had. I decided to ignore it and see what happened. When she exploded, all **** hit the fan and we are more than 3 years into this and can not get her under control. My personel belief is because I let her simmer for so long with low lying infection left untreated. Every case is different. I hope things are different for you. Dedee

We are treating Lyme / Bartonella, and use Minocycline, Rifampin, Cefdiner, about to start Plaquinel and use Valtrex.

Thanks so much for the help. She is 80lbs and its 1000mg twice daily.

What was the dose on your Valtrex and how much did your child weigh?

Our doctor specified the white pills. She is supposed to be taking it twice a day but I only started it once a day to avoid any herx. I guess it's safe to go on up on the dose then. Dedee

Ok, so we started the Valtrex. It's been four days. Nothing, nada, no change what so ever.....How long should it take? Dedee

Take a deep breath and stay calm. I agree with sf_mom. I think you can have Myco alone but because there is such a strong relationship to Lyme you should investigate to be sure. Myco often takes up to two years with combination antibiotics and supplements to completely rid the body. That doesn't mean you will see terrible symptoms during this entire time so don't panic. I believe that an LLMD is the best to treat because they know the co-infections the best and know how to be aggressive with therapy. We have been treating Myco / Lyme for 3 years. My daughters levels came in the normal range a few months ago. My sons were in the normal range around 18 months or so but then he flared and his levels went back up last fall so he was never really rid of it. It is a tricky pathogen, just like Lyme. You must be aggressive and persistant. Do not give up and do not let someone tell you it isn't important because there aren't symptoms. Read everything you can and get educated. This is your best defense. Dedee

I can't remember right away. I have the reports at home and will look them up. I just remember they were considered within the "normal" range by the lab standard. They have fluctuated some but for 6 months stayed in that normal range for may daughter. My son however, his went to the normal range and stayed for a while but then he started to have anxiety so we re-tested and they had gone way up again. This was at the beginning of the school year. He was still on antibiotics at the time. We changed his antibiotics and had to eventually but him on an SSRI because his depression was so bad. He is doing better but his myco levels are still elevated. Just as a side note, with both of mine, their IgG and IgM levels were elevated. Dedee

I am so happy to hear this news from you. You deserve it after all the years of struggle. Happy Day! Dedee

Mycoplasma is very much like lyme. It has no cell wall so it acts like a virus, but yet it's a bacteria. This makes it very hard to get rid of. The fact that your child has Mycoplasma makes him succeptable to viruses, but the underlying condition is still Mycoplasma. It takes years of the correct treatment to rid the body of Myco. Usually only an LLMD can help you with this. It has taken combination antibiotics for 3 years before my daughters titers have decreased into the normal range. My son's titers have been back and forth over the past few years. This is a dangerous bug to mess around with. I would not ignore it. Get Bruhners book on Lyme Co-Infections. About half the book talks about Myco. Also, find a good physician who has a healthy knowledge about Co-Infections who can help you with this. Once you clear the Myco, the rest will clear also. Dedee

I would think so. My daughter herxed just from OLE.

Those who have used the Valtrex, did you see a herx reaction when you started? We will be starting this week end.

We have been given Valtrex for my daughter's high HHV6 titers. I haven't started it yet because we are also making several other changes and I like to do one thing at a time. I did some research when her HHV6 came back so high. There is a Dr. Montoya at Stanford that has done a few studies on chronic fatigue, HHV6 and anti-virals. It seems that Valtrex doesn't work as well on HHV6 as the drug Valcyte. I talked with our Doctor about that when he gave us Valtrex. He said he likes to start with Valtrex because it is much cheaper and it has less side effects. Then if there is no response, he will switch to Valcyte. However, from the studies I read Valcyte has a very good success rate and the side effects can be controlled by starting at a very low dose and slowly increasing. I guess we will start with the Valtrex though since that's what he wants. Probably be another week or so though. Dedee

So can you get GlcNac as a supplement or is it by prescreption?

Yes it is an old antibiotic and does not work well alone but with another antibiotic it helps penetrate the cells. We saw only positive things from it. Especially with my son. Dedee

I have 3 PANS children and I feel like I have been robbed of so many years of "normal" family life. I don't even know what that is. I haven't been able to enjoy my older children because my youngest child is so severly affected. It sucks, it really does. I feel your pain. Dedee

When I am desperate and the flare seems never ending I result to steriods. We are dealing with Lyme and most people say never use steriods with Lyme patients but my daughter responds beautifully to steriods and it's often the only thing that will stop or lower a flare for us. When I went to the West Coast Conference that is what all the physicians were discussing for bringing these kids back. I have to say, I don't know what I would do if I couldn't do a burst when times are critical. Dedee

Well I think I finally figured out why the CBD wasn't helping my daughter. At first I thought it was a herx so I dropped back and started very slowly and was working up VERY slowly. I wasn't seeing anything bad but nothing good either. Then as I got up to around 8 drops I started seeing negative again. About that time I read that the CBD has some sulfa properities to it. This would explain so much for my daughter. She can not tolerated any type of sulfa and even sulfa antibiotics make her completely nuts. So I stopped it and she went back to baseline in a couple of days. I guess we are out as candidates for CBD oil. I was really hoping this was going to work for us. Back to expermenting with essential oils. Dedee

Yes it was very enjoyable. Enjoyed meeting you 3boymom. Learned so much. Dedee