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cara615

Our new PANDAS Doctor!

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So we finally got in to see Dr. Bradstreet in Buford, GA yesterday. AMAZING experience. He is a genius. the man knows so much about the immune system that it was baffling. I needed for him to dumb down a lot of what he was getting into because it was over my head. He has a wonderfully kind personality, no God complex and he took to ds immediately and vice versa. He even gave me his cell #!!!

 

We went over all the testing that I wanted to do and we prioritized based on what he thought would give us the most actionable information. We did and OAT in the office and will be giving blood next week for: Lyme, MycoP, H. Pylori, Immune pane (IgG, IgA, IgM, etc) and a cunningham test. He feels that he will be able to tell based on cunningham test if ds would benefit from IVIG.

 

We are also testing nagalase which is an indicator of low macrophages and if they are low then we will be getting GcMAF. He gav eus Vit D3 and Krill oil immediately and sent me to a website to buy Luteolin,Quercitin and Rutin in this one capsule that is supposed to boost Mast Cells.

 

He feels that DS is triggered by Strep as well as allergies to food and environment. He feel positive about ds's outcome. I guess the tests will tell us more as far as any other infections.

 

I feel like we are FINALLY in good hands and the great thing is that he has treated my friend's son with fantastic results.

 

Right now ds has come off a flare triggered by brother's strep and seasonal allergies. Allegra has helped us tremendously.

 

Bradstreet also wants us to go on prophylactic abx because he thinks everyday is too much. However, I don't want to change the protocol until he is tic free. I am so afraid of a regression once off the abx!!!!!

 

All in all it was a very positive visit and I am feeling hopeful.

 

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Fantastic!!! This doctor sounds like he is both testing and treating ! I truly feel the treating Pans doctors need to be working together to share testing protocols and treatment plans.

 

I am really happy for you.

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Have heard great things about this doctor as well. I wonder if my doctor's office has consulted with him some on gcmaf.

 

So excited for you.

 

Our doctor wanted nagalese below 1.0 ideally. My dh went from 2.7 (really high) to 1.5 just with bacterial treatments and supplements. Since he is pretty healthy he will not be doing gcmaf at least not right now. Since my son had been ill so long, he did the gcmaf with nagalese at 1.3.

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We are debating GcMAF for our kids as well. Our families results: Older DS - 1.3, younger DS - 1.2, younger DD - 1, I am normal at - .65......... We just retested older DS to see if his numbers have dropped with most recent treatments. It should take 4 months to get back results. Bradstreet may be able to get his patient results back faster as he is very involved in GcMAF/Nagalese.

 

My friend's son nagalese was elevated at 1.2. He herx'd intensely for the first 8 weeks of shots (even I was scared) but magically he got better. He started shots last September and was taken off antibotics two weeks ago. We will see if he can maintain his recovery and if his IgG subclasses have improved. Right now he is experiencing some fatigue so we will see. He is still doing weekly shots.

 

My friend's nagalese is 3. She thinks she'll be on shots for 2 to 3 years. Apparently, they have run nagalese on those suffering from cancer and they are typically between 3 and 7.

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S_fmom--that is really too bad that your friend's son had such a big reaction. The first month was the most difficult for my son. Because of the difficulty we went low and slow the entire treatment. In 4 months son was at .87 (started at 1.3) which surprised doctor. Dr thought it was because of all the other treatment beforehand that helped. We continued through 6 months just to use it up and then son had a minor flare so took him off immediately. My dh used the rest of the injections (only 1 month left) per doctor. Extra inflammation was always present but after first month and not increasing dosage it was a bit more tolerable for the remaining treatment. Supplements, claritin, and alkaselzer gold (sp) were very helpful.

 

Son was also on Valcyte the first few months of treatment. Muscle tested that he did not need it after that.

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Dr. Bradstreet mentioned that Ds can have a liquid form of GcMAF since he is so terrified of needles. He said its not a potent obviously but it still does the job. i think we are going to go low and slow if we wind up seeing elevated nagalase. I didn't know there could be a herx with this so now that I know, i definitely want to take it easy. I can not handle another flare. I may end up in the ER.

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Better Health Guy has a lot of information on Nagalese and GcMAF on his website so I thought I'd attach his treatment log and comments.

 

http://www.betterhealthguy.com/gcmaf-log

 

More information on GcMAF:

 

http://www.betterhealthguy.com/gcmaf

 

JuliaFaith: I am so tempted to move forward with the shots based on your son's and my friend's son's experience. Our older son's stamina or muscle weakness/fatigue is an issue and thought it could be of great help. Considering it for over the summer. I am hoping to know my friend's subclass results and if his have turned around we'll definitely give it a try.

 

When my friends son had such a difficult time with treatment they cut his dose in half and he did much better.

Edited by sf_mom

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Would definitely look at www.gcmaf.eu site for info. While BetterHealthGuys blog is informative his gmaf information may be a little bit out of date now.

 

Son's starting dosage was .05mL 2xweek. Some start at even lower dosages.

 

My last posting on the brain inflammation has some discussion on macrophages which gcmaf addresses. This was very good to see as support for doing the gcmaf treatment. Two vials of gcmaf and 6 months of treatment at my son's dosage was about $1600 (includes shipping costs). Although I have heard that you can buy smaller amounts at a time through Dr. B.

 

I was very glad we worked with a doctor on treatment since inflammation can be difficult.

 

Sf_mom--would be interesting to hear about test results. We did see some improvements right away but am also wondering if improvements will continue as body gets healthier. This treatment is supposed to last a lifetime, at least for some.

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Dr. Bradstreet mentioned that Ds can have a liquid form of GcMAF since he is so terrified of needles. He said its not a potent obviously but it still does the job. i think we are going to go low and slow if we wind up seeing elevated nagalase. I didn't know there could be a herx with this so now that I know, i definitely want to take it easy. I can not handle another flare. I may end up in the ER.

 

I would be interested in hearing your thoughts on this alternative, and if you choose to use it, what responses you see.

 

I believe there are one or two different fermented products that can be used, and had seen mention of it on PhoenixRising a while ago.

 

http://forums.phoenixrising.me/index.php?forums/gcmaf.10/

 

Because DD has been doing so well I had let my interest in this topic fall by the wayside, but obviously a probiotic drink that delivers/stimulates GcMaf would potentially be important to anyone who wants to stay healthy.

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