jjl

Laura, Why do you always pick the most complicated subjects to discuss First biofilms, now this! I have the unfortunate pleasure of trying to treat two boys with asd over the last 10 yrs and with autism you venture down all these roads. Hard to believe there is something more complicated to understand than biofilms, but you win for picking the one thing that I believe is even more complicated. The best person I know to describe metabolic pathways is Dr Amy Yasko. She has been doing genetic testing for yrs for asd kids like ours and she covers all of the metabolic pathways including the methylation pathway. Amy has a unique treatment plan also that is "very involved". We did the testing yrs ago and I really got into the whole pathway discussion. The genetic testing shows you which pathways are blocked and she tells you how to detour around the roadblocks. Here is a link to her site. If you think you have metabolic pathway issues, it may be worth looking into her testing which I believe is also on this site. It is not cheap, but at least you would know more about your child's metabolic roadblocks. http://www.dramyyasko.com/diagrams-listing/ The diagrams are overwhelming at first, but Amy breaks each cycle down and explains them in her literature. Your really have to be committed to looking into this because it is a very large and difficult area to understand. You could also consider buying one of her books which are linked to autism, but that does not matter because many of the issues are similar to lyme issues. I wish I could explain this in a reply but it is a very widespread discussion. One small example I could give is that our boys have a genetic mutation in the MTHFR area (one of the areas in the cycle diagram). This impacts BH4 (cannot convert BH2 to BH4). This in turn affects dopamine and serotonin levels and the urea cycle. Elevated ammonia needs BH4 to detox (a byproduct of some of these cycle issues is high ammonia production). High ammonia causes symptoms. Ammonia also inhibits metabolism of Butyrates. So, in this case, BH4 and Butyrate supplements would be considered. This is a small example of what genetic testing can tell you and how Dr Yasko can help. autism is more complicated than lyme in many ways, but in many ways they are similar. I view the asd crowd as the canaries in the coal mine. Wish I could help more, but please do take a look at the link. John L PS I have a hard time frequenting this site because we are overloaded at home, so if I do not reply that is why.

If you are seeing Dr Ann Corson, would you mind sending me a PM. I would like to chat. Thanks, John L

There's a great book called "The Lyme-Autism Connection" and it is hosted on aweb site called Lyme Induced Autism (LIA). There is a very large growing movement that Lyme/co-infections are a very large player in autism and the book discussed congenital lyme. John L

All, I see that many on this forum are dealing with OCD. After 4 months of treating Babesia with Mepron/Zith/Doxy, the OCD has really ramped up. We are about to switch over to treating another parasite and then Bartonella soon. Has anyone found anything that clearly helps OCD? I understand that the OCD spiking may be a sign that babesia is being knocked out, which is bringing Bartonella out and OCD may be one of the hallmark symptoms of Bartonella. Has anyone seen a reduction in OCD symptoms with the tx of Bartonella? If so, what tx were you using and how long did it take to reduce OCD? Any help is appreciated as it is becoming a debilitating problem. John L

All, I am trying to help a lady who has a child with autism and lyme. She is near Chicago. Does anyone know an LLMD near Chicago? John

This is an absolute riot! I think I'll use it for one of those Christmas yearly letters that people send out saying how great all their kids are doing except little Johnnie or Sally that got a B in 2nd grade and was traumatized. Well, this note ought to cheer them all up. I'm still rolling. John L

All, We have received some test results for our two sons. I was hoping someone could help me understand them. I am only showing what I think are noteworthy results. I think we have more results coming like a Fry Labs test. John L 10 yo son (he had a 2008 positive western blot IgG band 39) At the time of the testing, he was on Zith for 4 weeks (lower dose) Since testing, he has been on Zith + Doxy 4 weeks CD8-/CD57+ Lymphs Result 1L %, Range 2-17 Abs. CD8-CD57+ Lymphs Result 36L/uL Range 60-360 Lymphs Result 50 (High), Range 20-47 Lymphs (Abs.) Result 3.6 (High) Range 1.1 - 3.1 BUN/Creatinine Ratio Result 35 (High) Range 8 - 27 Note: All other CBC results like WBC, RBC, MCV, etc. were in range. 9 yo son (not sure what if anything he has) At the trime of testing, our younger son was not on any abx Mycoplasma pnumoniae IgG & IgM Abs. Result both negative Febrile Agglatinin Panel - Result All negative WA1 IgG Antibody IFA Result < 1:256 Antibody not detected ASO Result 4.5 u/mL Range 0 - 200

Is anyone seeing Dr Lucas in Maryland? If so, can you PM me.

Have you ever done a blood draw allergy test? I would think the IgG and IgE food combo is worth a try. It sounds like he may be IgE to shell fish. IgE is like the peanut allergy. IgG allergies are the type that do not have immediate reactions (like peanuts) but more delayed reactions like over days time. Metametrix labs has this test. Our son used to get hives when he ate eggs or anything that contained eggs. This test showed he was IgE to egg white and when we removed eggs he did not get hives anymore. The test also showed he was IgG reactive to several foods. Many things cleared up when wew removed those foods and started rotating other foods to prevent other allergies. An out of whack immune system can cause all these types of allergies. It is possible that his system is out of whack AND overloaded by hidden allergies. Test to find out, remove the offending items, treat to heal. Sometimes anti-inflammatories are needed during treatment to help the healing process. Years of Colazal really helped our sons. John L

Thanks Jodie, Can you tell me what else you use that has helped with detox. John L

I think this way also as I have never believed that focusing on label diagnoses helps anyone target the cause. It never helps answer the question why. One of the advanced members on this forum posted the ILADS 2010 Conference Takeaways and here is a quote: • "Dr. Richard Horowitz proposed that Chronic Lyme is really MCIDS - Multiple Chronic Infectious Disease Syndrome" I think people will look back on this statement in 5 or 10 yrs and say that he was ahead of his time. It is likely multiple infections and that is why the co-infections test is important and hopefully they will add more and more tests to the list over time. I also find it interesting that the Dr Horowitz mentions LDN as helpful in lowering cytokines which is a big help with symptom relief. LDN was used for MS for years and then about 5 yrs ago Dr McCandless introduced it for autism. We started it then and saw good results. It modulates the immune system and we actually saw it bring out viruses. Amazing how all of the different integrative diseases are tied together deep down. Seems like everything is one or two puzzle pieces apart. John L

Is anyone seeing Dr Corson? If so, could you please PM me. I would like to hear your thoughts and progress. jjl

We put our son on the GFCFSF (dye free) diet eight yrs ago. He has autism and the docs recommended it. At 2 yrs old, he drank milk like an addict and had rashes all the time. Within one week of removing milk, we saw the biggest withdrawal symptoms you could imagine. Kind of like what parents on this forum refer to as rages. Then after a week, the rages were all gone and he began sleeping thru the night for the first time. Dairy will clear your body in a week, but it takes months (6 to 8 months) for gluten to clear your body. I know of numerous parent reports (in the autism community) that tried putting gluten back in the diet only to see symptoms creep back in over a few months time. When the school told us last year that our 9 yr old got a hold of someone else's cookie, we dreaded the days and weeks after knowing he would have GI issues and sure enough he did. This happened a couple times. I know autism is different, but in many ways it is the same, especially when it comes to immune issues. And if the autism is caused my lyme, then there are many more similarities. It is not easy keeping the diet. It takes a commitment and it has helped our sons from having tougher symptoms than they already do. John L

Has anyone had success with Burbur for detox. We use activated charcoal at bedtime, but I have heard that Burbur can help also and would like to try some during the day since it does not interfere with other supps/Rx like charcoal can. If you have seen Burbur help, can you indicate how much you use? Thanks John L

Thanks Wendy. I really appreciate your help. A handful of folks replied on the PANDAS forum indicating the spitting symptom resolved with abx, so that gives us hope. I am most concerned about this symptom because of the upper GI finding of very swollen arytenoids. I think it is odd that the only times he has shown heavy spitting symptoms is during major exacerbations in late 08 and now. Of course, we were told PANDAS and Lyme were not an issue back then because our results were not positive. Thank you also for telling me the urinary issues can increase initially with abx treatment. We are seeing an increase early in the treatment and we were concerned. Hopefully it will taper and then decrease. John L

Thank you to all that replied. It sounds like the spitting symptom can resolve with abx, which is what I was hoping to hear. It does look like ocd or a tic, but at least in our son's case, we have upper GI scoping evidence that it is real inflammation. I wonder if PANDAS or Lyme can cause inflammation in the throats of some kids and cause them to feel like they need to spit. Our GI doc said the inflammation was pretty bad. I hope it resolves soon for our ds like it did for you all. I find it odd that he was spitting in the Fall of 08 through Spring 09 until prednisone treatment, and then no more spitting until now, a year later. All his symptoms look like PANDAS and/or Lyme, so maybe the spitting is triggered by an exacerbation. I will post when the spitting resolves. John L

Thanks Laure, Although our ds son has several PANDAS or Lyme like symptoms, the spitting concerns me the most because of the throat inflammation noted during his last scoping. So, I am hoping someone can tell me whether abx resolved spitting. Like I said, the prednisone did resolve the spitting in 09, but our ds gets sick on prednisone and I understand that steroids are not good if you have lyme which he has. John L

I posted this on the PANDAS forum because I have seen several parents report spitting with PANDAS. But, we are njot sure that our ds has PANDAS. He did have a positive lyme test, so I thought I would post it on this forum also, although I don't recall people on this forum talking about the spitting symptom. One of the core symptoms that our 10 yr old ds has is spitting. It is pretty bad right now along with his frequent trips to the bathroom. I believe that I have read several parents talking about the spitting symptom. We started Zith 200mg 2xday and next week we will start Doxy. Is there anyone out there that has a child with the spitting symptom and has seen that symptom resolve with abx? Please let me know as this symptom seems to be getting worse and I am not sure if it is strep related (no positive strep tests ever) or lyme related (positive Igenex band 39) or some allergic reaction (he did have a swollen airway noted on last upper GI scoping in Mar 09). The spitting went away with prednisone but came back one year later. I am not sure if this is an exacerbation of PANDAS, Lyme, or some sepoarate issue with his throat that we are not aware of yet. Please share any experiences you have with the spitting symptom and whether it resolved with any treatment. I appreciate any feedback. Thanks, John L

One of the core symptoms that our 10 yr old ds has is spitting. It is pretty bad right now along with his frequent trips to the bathroom. I believe that I have read several parents talking about the spitting symptom. We started Zith 200mg 2xday and next week we will start Doxy. Is there anyone out there that has a child with the spitting symptom and has seen that symtpom resolve with abx? Please let me know as this symptom seems to be getting worse and I am not sure if it is strep related (no positive strep tests ever) or lyme related (positive Igenex band 39) or some allergic reaction (he did have a swollen airway noted on last upper GI scoping in Mar 09). The spitting went away with prednisone but came back one year later. I am not sure if this is an exacerbation of PANDAS, Lyme, or some sepoarate issue with his throat that we are not aware of yet. Please share any experiences you have with the spitting symptom and whether it resolved with any treatment. I appreciate any feedback. Thanks, John L

I am brand new to this also, but I have read several posts between the PANDAS and Lyme panels about kids getting worse after IVIG. It really makes me wonder how long one should be treated with abx BEFORE trying an IVIG OR whether it is ok to get IVIG during lyme treatments to boost the immune system. I would love to hear thoughts on this from the more experienced parents. John L

Just wondering what experiences anyone has had with Bicillin shots versus other abx? We are not sure whether our ds has Lyme or Pandas and the doctor may prescribe oral abx long term, but may try a Bicillin shot at the initial visit. Has a Bicillin shot helped anyone with Lyme? Or is it not as helpful as oral abx. I am new to this and would like to hear some experiences before our doc visit. Thanks, John L

Thank you. You never said whether it helped you all those years. I would be interested to hear that since you took the shots long term. Thanks, John L

Just wondering what experiences anyone has had with Bicillin shots versus other abx? We are not sure whether our ds has Lyme or Pandas and the doctor may prescribe oral abx long term, but may try a Bicillin shot at the initial visit. Has a Bicillin shot helped anyone with Lyme? Thanks, John L

Michael, Thank you for the reply. Even though Dr K believes in the lyme-asd connection, the word is slow to get out. For expl, when we saw peculiar symptoms in 2008 and got the Igenex results, the docs did not think lyme was an issue since the results were mixed (even though there were three positive IgG bands; one being band 39). Since the Igenex was positive and the CDC was negative, it appeared contradictory and therefore viewed as a negative. So, here we are, two yrs later with the same symptoms. But this time, the lyme-asd movement has taken a larger hold and the word is out there more. Thankfully, I was able to schedule an appt with a Dr Beals in Maryland recommended by folks on this forum. I also have an appt with Dr Latimer for PANDAS, so I hope we can rule in or out these issues because our son is still out of school and needs help ASAP. John L

Thank you to all that replied to me. I appreciate it. It sounds like the test results from 2008 warrant a visit to a lyme doc and I will set that up asap. I will also order the dvds you all mention. John L