NancyD

My DD (now 16) has had jerking movements while sleeping since birth -- I suspect her Lyme/Bartonella/MycoP was congenital. Since being treated I have not noticed these same jerking movements, although she no longer sleeps with me (thank goodness!), so I can't say for sure. And I started getting tingling/numbness in my hands and arms once I started treating for Bartonella. It went away after going on Rifampin -- I had already been treating my Lyme for over a year with Doxy/Tindamax.

Want to go together? I'm game...

Agree. I'm sure he would do it if you asked. But, doesn't mean that he can't. I would ask him (our LLMD tested for it.)

I have never seen him test for that. Our integrative MD suggested testing it.

Have you looked for MTHFR or COMT mutations? Tested for KPU? Checked D levels? Glutathione levels? Heavy metal testing?

Sounds a lot like my DD. Diagnosed with ASD, bipolar, ADHD, and severe colitis by age 6. Turns out she had underlying bacterial infections -- PANDAS, Lyme, Bartonella, MycoP, etc. Once we healed the gut and cleared the infections it eliminated the symptoms (violent rages, mood dysregulation, social/emotional/communication problems, tics, sleep and sensory problems, brain fog, joint problems, etc.). We treated with multiple abx, IVIg, IV glutathione, and many supplements -- psyche meds only made her worse. Then we had to figure out why she was so susceptible to so many infections -- she was catastrophically low on vitamin D, low on zinc (most likely KPU), and homozygous c677t MTHFR. So now we are treating her methylation problems to see if we can reduce or eliminate her susceptibility to infections. With the exception of anxiety/OCD, all symptoms are gone and so are ASD, bipolar, and ADHD diagnoses. PANDAS has been in remission for 2 years, Lyme/Bartonella/MycoP is under control. We're still working on the OCD -- I'm guessing due to high glutamate/low GABA. Sounds like you need to do a complete immune workup and test for many different bacterial and viral infections. Best to work with a top PANDAS expert (Dr. B, T, L, or K) or work with a good integrative MD who knows PANDAS and will rule out other underlying infections. Or see a good LLMD who treats PANDAS. With the right doctor, extensive Lab work, and effective treatments you should be able to mitigate most (if not all) of the symptoms.

I definitely believe there is a causal link between autism and underlying bacterial and viral infections -- whether it be Lyme, other TBIs, MycoP, PANDAS/PANS, etc. Once you identify and begin treating the various infections (and usually there are multiple), you will often see many of the ASD symptoms begin to disappear. But then you have to figure out why your child is susceptible to these infections and treat it -- low vitamin D, problems with the methylation cycle, KPU, mitochondria, etc.

Kim, Definitely no dairy in it. My DD started taking it when she was on a gluten- and casein-free diet. We use 4Life Transfer Factor TriFactor and now also Transfer Factor LymPlus by Researched Nutritionals. You can buy it online. When she was taking just the Transfer Factor TriFactor she took 3 capsules BID. Now that she's taking the LymPlus too she is taking one capsule BID of each daily. I too take Transfer Factor TriFactor and LymPlus -- both an important part of my treatment. Nancy

Definitely a link in my DD's case. The key is to treat the underlying infections and also figure out WHY your child is susceptible to these underlying infections so you can correct it (e.g., does child have a MTHFR and/or COMT mutation?). Today you would never guess that my DD16 was ever diagnosed with autism as a young child. Thanks to abx and other integrative treatments she has no remaining signs. Furthermore, PANDAS is in its longest remission (2 years and counting) and Lyme/Bartonella/MycoP seems to be under control. We are now able to focus on the underlying methylation problems that most likely led to her susceptibility of getting one infection after another. We are still trying to figure out what is causing the high anxiety/OCD (right now my best guess is high glutamate and low GABA caused by the methylation problems).. Once you start to treat the underlying infections (Lyme, PANDAS, other TBIs, viral infections, etc.) I think you'll begin to see the ASD symptoms dissipate.

For my DD it always took 7-9 weeks to see results and then the results were huge.

Missmom, My DD, now 16, had severe tics (both vocal and motor) from PANDAS. They were at their worst around age 12. I was so worried about how other kids would react. Nothing helped until we did IVIg. It took weeks to see any change but around weeks 7-12 we saw ~75% reduction. And within a year we saw a 100% reduction. To this day, the tics have never returned. Conversely, her OCD, which was fairly mild at age 12, has gotten worse over the years. We have since discovered that she has Lyme, Bartonella, and MycoP in addition to PANDAS, as well as homozygous MTHFR c677t mutation and we are treating her for all this. The tics and the other symptoms are not permanent -- they can be treated successfully -- and there are many success stories out there. You need to test for all possible underlying infections and treat them accordingly. It takes time, patience, and a good team of doctors. Hang in there, pace yourself, and see one of the experts recommended by this forum. Nancy

Wow, Emmalily, you have come so far. This is so great...congratulations!

Getting PANDAS in remission was attributed to abx plus getting D levels in normal range (they were catastrophically low) and HD IVIg. Keeping PANDAS in remission is attributed to treating underlying Lyme/Bartonella/MycoP. My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione. Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis. But is the PANDAS completely gone? There are billions of different strains...some of which cannot come back after antibiotic use.. our doc who does fecal transplants in new york said that antibiotics can do some SERIOUS damage, especially since not all is known yet about the gut...but of course that's just one doctors opinion. Can you share how much glutathione your daughter had for her age/weight? PANDAS has been in remission just under 2 years. Sorry, I don't recall dosage on the Glutathione IV. Remission with antibiotics and antifungals?

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione. Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis. But is the PANDAS completely gone? There are billions of different strains...some of which cannot come back after antibiotic use.. our doc who does fecal transplants in new york said that antibiotics can do some SERIOUS damage, especially since not all is known yet about the gut...but of course that's just one doctors opinion. Can you share how much glutathione your daughter had for her age/weight? PANDAS has been in remission just under 2 years. Sorry, I don't recall dosage on the Glutathione IV.

No, she did not at all herx from the IV. Glutathione supplements are not recommended. IV is much more effective. If you can't do that then transdermal would be better than supplements. DD's glutathione levels are now in the normal range. They had been very low.

My opinion, is that if you still have PANDAS, then the intestional wall is not healed. It just makes no sense in my opinion. That's interesting though with the glutahione. Well, she has one of the top pediatric GI specialists in the country. He scoped her from both ends and ran every test possible. He told us EVERYTHING was clean. He was the same doctor who scoped her at age 5 and diagnosed the severe colitis.

I respectfully disagree with the statement that you can't heal the gut while on abx. My DD had severe colitis and was allergic to almost every food. Nothing helped -- we tried every GI medication. She was on a highly restrictive diet and could only eat if she took digestive enzymes with every meal and snack. The slightest cross-contamination of gluten would make her very ill, even with the enzymes. She raged up to 3 hours a day, sometimes every day. There were weeks we couldn't go anywhere. Then, at age 7, our DAN doctor diagnosed her with PANDAS and put her on abx (this was 9 years ago). We put her on an anti-fungal to combat the yeast. At the same time our DAN doctor started her on monthly Glutathione IVs, which lasted only 10 minutes apiece and were relatively inexpensive (insurance also covered 80%). After 2 years of having monthly glutathione IVs (and still taking abx twice daily), her gut was completely healed. We challenged her with dairy, gluten, and soy very slowly and lo and behold no more GI problems. In fact, we were able to take her off the restrictive diet (with the exception of dyes and additives). She has been on abx for 9 years and when we last scoped her our GI specialist told us she was absolutely clean. During the past 18 mos she has been on up to 4 abx at a time for Lyme/Bartonella/MycoP/PANDAS and thankfully she has not had any GI setbacks. She is still on an anti-fungal and takes high doses of probiotics and other supplements. Glutathione also helps the body to excrete toxins. Once we were able to heal her gut we were able to chelate more aggressively.

I too feel like methylation may be an important (and underlying) factor for DD16. She does well on NAC but it's possible her dosage may be a bit high (currently 1200 mg bid). She does fine with 10 mg 5-MTHF dosage (we titrated very slowly), but how do you know what is just the right dosage for your child? She is taking Allithiamine (B-1), B-3 (niacin), B-6, and B-12 (nasal spray). We just checked zinc and copper again recently but I have not yet seen results. Have to check on homocysteine levels. Any other labs to check? Thanks for the links, Laura. Too early on a Saturday to look at the diagram for too long. Hurts my brain to decipher. I wish I had more of a science background. Please post whatever you find.

Hmmm...very interesting. My DD is homozygous C677T. Cannot remember what her homocysteine levels are or when we last checked. We did try SamE back in August/September and DD's anxiety seemed to get worse but it was the beginning of the school year so it was not the optimal time to try a new supplement. I was going to re-try again this month. But after reading this I guess we should check her homocysteine levels first. Thanks for this info, fightingmom! It seems in some instances, yes. But, not all adelles of the MTHFR cause high homocysteine levels (I've seen in a few articles tonight that the heterozygous C677T specifically may not be high at all). So, if a person with heterozygous C677T actually has low homocysteine (homoecysteine, I believe is a precursor to methionine), supplementing with SAMe, NAC, methylcoblamin, etc. could in theory reduce the levels even further. Low homocysteine is also a bad thing and causes it's own issues.

Ok, now I'm confused. On his site Dr. Jones says "AVOID SamE, an over the counter product as this S-adenosyl-methionine can further inhibit MTHFR." I thought SamE was part of treatment for MTHFR, no?

I don't remember where in MA you live. PM me. Perhaps I can suggest someone.

EAMom, No, my DD is not on an SSRI or any other psyche med. She is homozygous for the thermolabile variant of MTHFR (C677T). Her anxiety/OCD is really bad. It's the only symptom left after PANDAS/Lyme/Bartonella/MycoP treatment. Re methylation treatment, have been giving 10 mg of 5-MTHF since July 2011. Also giving B-1, B-6, Manganese, and will add nasal B-12 next week. She didn't do well with B-12 shots when we tried years ago. And we still have to try SAMe. For us, OCD is the biggest nut to crack. We have checked cholesterol twice. I am still looking for the most recent test results (Aug or Sept 2011), which was high. In August 2009 it was: Cholesterol, fasting 162 Triglycerides, fasting 139 HDL, fasting 48.1 VLDL, fasting 28 LDL, fasting 86 Cholesterol, HDL 3.4 Nancy I have to read more on that (if MTHFR affects cholesterol). I know it is linked with heart dz, not sure cholesterol per se? Is your dd on an SSRI? re MTHFR, what mutations does she have (I'm thinking of making a poll later), homo/hetero A/C? How is her OCD? Do you know how high her cholesterol is? Has it only been checked once? We don't eat a lot of red meat either. Ice cream yes. She'll eat chicken too. She will eat beef, I just don't tend to cook it. We're doing the MTHFR test...it is pending.

My DD16 has high cholesterol and MTHFR mutation. Her diet is mostly vegetarian (occasional chicken and eggs), although tends to be high in carbs. Occasionally has chocolate or ice cream. Not nearly as active as she used to be (now just gym plus tennis 1x/week and riding 2x/week). At 16, she mostly exercises those fingers on the laptop or texting on the cell phone! I assumed high cholesterol was due to decrease in activity plus all the carbs. Did not know MTHFR mutation could affect cholesterol.

Personally, I would steer clear of ANY vaccinations right now considering how sick your child is. Any additional assaults on the immune system could do much greater harm. If you are concerned about protecting your child from MMR or other diseases covered by vaccines at this age (off hand I forget the schedule), I would suggest getting titers tested for those diseases. Chances are the titers will be high enough so you won't have to worry about getting those boosters.

I agree 100% with everything Laura just said.