Iowadawn

Hello Angie! Good to hear from you. We are cautiously optimistic that we are turning a corner with our ds12. Has the LLMD ruled out bartonella? When we started aggressively going after this we are seeing progress with the hd IVIG's. We have gone to 8 weeks a part. We want to get 2 more in before the end of the year when the approval for a year of them expires. Evan has been back in school--some hiccups, but he is more like we had in early elementary--keep it together at school. Evenings can be interesting if there are things he's stuck on. BUT, he has been able to rebound out of the funks and get back on the horse & get going. I still look forward to the day when the aggression/verbal garbage goes away for good! We are trying a low dose of flagyl this weekend after seeing the LLMD yesterday----DO say a prayer--I think we will send the girls to friends or sisters to keep the weekend as stress free as possible. We added colloidal silver late July. After this we started more momentum. His bartonella rashes are very few and farther & farther between. After the last IVIG in Aug. we didn't see a huge increase in the rashes like we have. PM me. or email. or call. Thinking & praying for you. Dawn

Our son is on a protocol that gradually ramps up. Our LLMD uses ACS brand, intraoral spray. 200ppm. You don't drink anything for at least two minutes after you spray it. He has learned that it is particularly good for getting tough bartonella. Good on lyme, too. Over several weeks the sprays are increased from 5 sprays a day to 15 2x a day. I have been pleased. Feed back from other CS users of this protocol, that have gone to this doc, is very positive. It's about 45-50 bucks a 4 ounce bottle. It is quite a bit stronger than SilverBiotics. Dawn

It is hard to see the big picture. What you wrote here is huge. She has been sick for a very long time. The healing is going to take a very long time. Just halting the infections/autoimmune garbage happening in her body and brain is a huge first step. We are a year into our son's lyme/bartonella/babesia treatment and it has been a slow, slow process--forward & backward, forward& backwards. You are on the right course!! Stay strong. dawn

Wow! This is wonderful! We have seen good improvement since going after bartonella in our ds12. Easy to say, hard to do: try not to let the hiccups or spikes in behavior get you. You are moving in the right direction. Dawn

We ran the babesia FISH through IGeneX. It is a flourescent smear. See's the real deal in the red blood cells if it's there. Our son was positive. That test gave me the most assurance that we indeed were on the right track. The symptoms that (looking back) were tied to this bug are no longer present since we treated for it. They have not returned. IGeneX tells about the FISH on their website. They also have a bartonella FISH now, I understand. Anyone run this? Dawn

I give Florastor two big thumbs up. Our ds12 has been on a boatload of antibiotics (PANDAS/lyme) for some time. No yeast issues or VERY little goopy poop. PM me for info on best price off web. We give 2 a day. We throw in some potent good bacteria now & again, but FLORASTOR has been our friend! Dawn

Glutathione

Wilma- If what you were receiving was a whole blood product, say a transfusion, yes it is not inconceivable that you can get an infection from someone's blood. Many diseases are screened, but not all, I suppose. IVIG is pooled antibodies (Ig type) from 1000's of people & I believe sterile. In it there just might be Ig's for bartonella, which could help prime your immune system to go after bartonella, as just one example. Now, this is a very simplistic explanation of what IVIG does, and how it works at different dosages is a whole other discussion. But, the answer to your concern would be a "no". Maybe someone else can weigh in. Dawn

A cream. White. Kind of odd smelling, but you don't put it on by your nose!! Ha They compound it. You refrigerate it.

The only drug in the class of drugs seroquel is in, that made sleep better and leaves our boy rested & ready to get up in the a.m. has been Geodon. Geodon helps with REM sleep. Risperdal screws up REM sleep. I am not sure what Seroquel does, but it wasn't a good fit with our son. Dawn

When the heel pain was the worst (but we didn't know it was bart) there wasn't too much we found that helped. We don't buy expensive shoes, so we did get some squishy heel inserts. This and ibuprofen helped some. We are on Rifampin & biaxin for the bart, along with a colloidal silver spray protocol. I think we have seen a big jump since adding this (cs). He is in school and settling in better & better. He is loving 6th grade. Encouraged. I wish I had great ideas, but this is about it. Dawn

Oh, this sounds scary. But what do I know. Our ds12 is on conventional antibiotics for bartonella, etc. We added a colloidal silver spray a month ago per our LLMD and have seen some very good gains, finally. Our son has been on a BOATLOAD of different psychiatric meds. Geodon and Namenda have really been the only two I would give good marks. You can PM me & I can give you additional info on these. Our psychiatrist admitted that psychiatric behaviors with infectious beginnings (etiologies)are very difficult to find medicines that help. Geodon has the added benefit of helping the sleep cycle (REM) sleep. Geodon is a dopomine antagonist. Namenda is a glutamate antagonist. Dawn

There was research showing similar results published just earlier this year.

Hawks- Just saw this. Dr. P ordered it from Wellness Compounding Pharmacy. They compounded a cream in two big syringes that allows you to measure out a specific amount. It was sent on ice. The invoice said $44. Just thought I would let you know. They have a website. Dawn

Is she unveiling any new info/research knowledge that we here in the US do not already know? Also curious about the immunologist hired with Pepsi grant--anything new from him?

A Big "AMEN" to the Klonopin---Nasty results here wiht ds12. Dawn

For those who have followed our situation you'll remember our ds12 is a PANDAS (dx 10/08) and the 3 B's (dx 10/10). All $##%%^#$ broke loose with lyme tx we started last late Sept. It hasn't been a good year or summer until recently. Within the last month there has been med changes & a hd IVIG this last weekend. I started to really see some changes when we added the colloidal silver a couple weeks ago to particularly go after bartonella we have had trouble getting. He has come out of this IVIG the best, by far, of any he has had. He hasn't had a big behavior drop/ or weird/worsening gunk he has always had by now. I hate to say too much. Just that we are seeing some good stuff here. Dawn

Similar experience here with an ID. DAwn

Awesome, Wilma! The social stuff is sooo big. (Watching the IVIG drip again today!) Dawn

Wilma- How are things going? Any changes? Been thinking of you. dawn

yes, on the sx list you gave. Cunningham has shown that there is a rise in Cam Kinase II in Lyme cases as well as other infections. not only just strep. I think the alliance of Dr. Karen Newell will help sort out the overlapping and what is going on. Her research and tx protocols are close to the beginning of FDA trials and are very exciting. But, yes on all he symptoms. dawn My edit is to say that if your child was perhaps only scratched by a cat and caught a bartonella species this way, then I suppose you would get it without Bb. I am sure there are other vectors, too.

If you go to a site called dr.jones kids. He has a bunch of rash pictures. There is a picture of a small, thin scratch-like rash on a lady's hand. Best online example I can find. Bartonella. Our ds's look like this, but are usually longer. From a distance they will remind you of the "fingernail across the skin" attack. The red is dashed, but all below the skin surface. Earlier this year after one IVIG his upper back had MANY long rashes. He has had a few show up on his neck. They will hang around for a few days and fade. Right now he has none. We have an IVIG this weekend--I bet they pop out again. It's a weird time & my description & writing stinks--I hope this helps you. Dawn