sf_mom

Our twins have been treated for Lyme induced autism since they were 3 1/2 years old by an LLMD. One was high function with many sensory issues, OCD and rage behavior. One had language regression at 2. They are now 6 1/2 years old and meeting all their developemental milestones and are in 1st grade. The longest herx we experienced was 5 months. The first two weeks were very intense with daily rages, after that point we noticed slight improvement and rages eventually decreased to once a week. However, it did take the full five months to fully resolve the weekly rages. We worked very closely with our LLMD during this period and at one point they even asked if we wanted to slow down or change antibiotics but we choose to continue with current antibiotic combination. We eventually got the break we needed in symptoms and have not experienced those type of rages for some time. Our twins also have low IgGs as well as low IgAs. Throughout this process, I learned if your child is deficient in amino acids they will have a difficult time making IgGs. Also if your child has low absorption, you may have problems with oral supplementation of these vitamins/minerals. We discovered all our kids have low absorption from their comprehensive stool analysis. We are using SpectraCell test to determine deficiencies of vitamins, minerals and amnio acids (SpectraCell is micronutrient test that measures how these micronutrients are actually functioning with the white blood cells). We are now boosting our older DS immune systems with IV vitamins and minerals to help fight Lyme et al and plan do it with our twins as well. The IV nutrients have definitely helped with our older son's remaining symptoms. Since you are dealing with similar issues it might be something to consider with your Dr. as you treat Lyme et al to help him detox and methylate properly.

We did have intense herx's from tindamax that included emotional liability and rage behavior that took time to calm down (several months). Our older DS was on it daily for 22 weeks and younger DD daily for over six month if not longer. Tindamax will treat or get at biofilms as well and perhaps that is adding to your DD symptoms. You can google Eva Sapi & Tindamax.... she discusses how effective Tindamax is on biofilms.

If you have Lyme, your child is older and feel IVIG might be helpful ..... there is a Dr. Katz in CT that can help as an alternative. I am not sure if Dr. Katz sees pediatric patients but its certainly worth a call. He recently spoke at ILADS with regards to his success with IVIG for Lyme patients.

JuliaFaith will have some great local recommendations that can get your son well. Just an FYI..... we are local to the Bay Area and we now have at least 8 wonderful Dr.'s in our area that treat PANS and understand to look for infections/issues well beyond just strep. Wishing you all the best in your search to get help and son's recovery. Keep the Bay Area in mind but I don't think you'll ever need to move beyond the Settle Area for great help.

I forgot to mention..... When we treated DD aggressively for yeast with nystatin she broke out with Ringworm and a fungal rash. She also had a black tongue at one time indicating fungus as well. I think your DD good response to anti-yeast protocol could indicate yeast or fungus.

A lot of people assume if they check their house and its clean of mold the child is not impacted. This is not true as mold exposure could come from any building, even school. I would run the tests recommended on the Shoemaker website and confirm if she has a problem first, then investigate the home and treat once the house is clear. I believe all the tests recommended are done by Quest/Labcorp and hopefully covered by your insurance. Prior to spending a ton of money on IVIG I would also check her nagalase to see if its elevated. A couple of other stumbling blocks with Lyme are viruses, heavy metals and possibly a co-infection like Babesia/protozoa FLT 1953 (testing by Fry Labs).

I was also thinking her lack of treatment response could be mold related. Here is a link for mold testing. http://www.survivingmold.com/diagnosis/lab-tests The other thing to think about is testing is her Nagalase level. "Nagalase is an enzyme that prevents Vitamin D receptors (VDR) from being activated on the surface of the macrophage. As a result, macrophages are not "activated" and our immune systems are not able to properly respond to invaders". We see one Dr. who believes elevated Nagalase needs to be addressed prior IVIG or the immune system will never be able to rectify itself. It is common for Lyme suffers to have elevated Nagalase. http://www.betterhealthguy.com/gcmaf?highlight=WyJnY21hZiJd

The replication cycle for Lyme is every 28 to 34 days. If you are dealing with Lyme it would make sense to see a worsening of symptoms at 3 to 4 week mark if it is untreated. Or, cause a self resolving herx 3 to 4 days if on combination of antibiotics to treat the Lyme. It is also possible to see a flair from parasites replicating during Full Moon Cycles. The magnetic pull activates them. The full moon for this month was Saturday the 19th. When we started our younger son on antibiotics for Bartonella he raged almost daily for 10 to 14 days. Then once things settled down he would rage once a week on Wednesdays. It took a total of five months for the rages to cease. Prior to that particular combination of antibiotics he was not raging. Life cycle for Bartonella is less than a week.....so, the Wednesday herx's made sense.

You got a lot of great responses and advise. One thing that stands out in my mind is the swollen neck lymph. This particular symptom is an indication of Bartonella. Is there any possibility he was bit by a tick prior to this event? Definitely put Bartonella at the top of your testing list for when you see a PANS Dr.

Wanted to mention John is now in Kansas if anyone lives there and is suffering from Lyme reach out to him via FB.

I agree with Rowingmom. I would even wait until things settle from starting the Doryx which could be a week or two. As you know, we just started our 4th year of treatment and we still have indications of Bartonella. Recently we did a rotation of all antibiotics for all the kids, older son is on Biaxin, Omnicef and Alinia for Bartonella, Lyme and some coverage for Babesia. As soon as we made the full switch we had complaints of the soles of his feet hurting first thing in the morning.

Awesome!

We did very HD (750 billion units or more per day) multi strain probiotics based on the recommendation of our nutritionist for over two years. It did normalize color, regularity and form for all three kids. We worked up to those doses and did not notice any negative responses. Year over year we have done comprehensive stool analysis and food allergy panel. Here is what we learned: Our children had chronic yeast, some low beneficial bacterial, low absorption, low pancreatic function with allergies to milk, eggs, cheese and casein. One had parasites and one had an opportunistic bacteria that I had never heard of but dangerous if it gets into the blood stream. After about 2 years of elimination diet they no longer had sensitivities to these particular foods but now showed sensitives to Gluten. I read a very good book along the way called "Enzymes For Autism And Other Neurological Disorders". In the book they make a strong case for using enzymes to break down large proteins verses elimination diet due to the fact you may only chase food allergies to whatever is the predominate source of food. In our case, this was true. When we added a Dr. who specializes in biomedical treatments of autism to our team she recommended we add a stronger dose of protease for low absorption and pancreatic function along with Huston Enzymes to breakdown the large proteins of Gluten/Casein's plus lowered the dose of probiotic to 100 Billion per day. They are no longer on a elimination diet but eat very heathy foods including fermented vegetables and we rotate brands of probiotics. We are treating the yeast with alternating days of HD nystatin and diflucan along with a few other therapies. In our experience the yeast is a real bear to treat as it has been on ongoing issue since our first stool analysis. It will form its own biofilms, deteriorate the mucus lining in the gut, grow tentacles that attach to the intestinal wall, throw off toxins that will make the intestine more acidic, etc. All this will essentially open the door to other opportunist bacteria and food allergies/sensitivities hence leaky gut. I also understand Bartonella will root itself in the intestinal wall. Some of these bacteria/viruses in the small intestine are thought to produce the nagalase enzyme. "Elevated nagalase has a profound detrimental effect on the immune system. Elevated nagalase is often presumed to be related to microbes of viral origin or cancer. Viruses that are nagalase producers open the door to chronic infections." "Hemagglutinin contains nagalase and is also found in flagella of some bacteria so it could also be the case that some bacteria may produce nagalase". "Several intestinal bacteria are producers of nagalase. Editor's Note: I found this connection to be quite interesting; the gut is big." See more at: http://www.betterhealthguy.com/gcmaf#sthash.t4IuZxZD.dpuf Anyway I've got to run. The reason I mention all of the above is because it is all so interrelated. I can not express enough how valuable to comprehensive stool analysis has been for our family. I now put equal value in the absorption of vitamins/minerals and breakdown of proteins as I do supplementing with probiotics. At a minimum the comprehensive stool will tell you which good bacteria are low so you are supplementing with the proper strains.

If you are in Northern CA there are some great LLMDs in the Bay Area. Please feel free to PM for prespective on names treatment styles. Most of them are versed in treating PANS no matter the infectious trigger.

He is a thoughtful person. Easy to be around.... even went to the kids soccer game on a Saturday morning. I highly recommend extending an invitation. He inspired our older son who is just starting to understand the impact of his Lyme Disease.

I wanted to post this Facebook link because John is a Lyme suffer probably from the age of 9. He had many neurological symptoms including OCD. He is now 24 years old, not currently being treated and riding his bike across America to raise awareness for Lyme. Always nice to read or hear about recovery stories. As a family, we had the pleasure of hosting John and sending him off over the GG Bridge as he started his bike ride. In one video he discusses the impact of pediatric Lyme and the devastation it causes. https://www.facebook.com/TBDAlliance

We did both Tindamax and Doxy. We did not stop Doxy until we had results from the TIC and felt we were in the clear from any symptoms which was about 4 weeks.

I wanted to pass along an on-line event that is starts broadcasting Day 3 at 10:00 a.m. PST with Dr. Klinghardt. The other speakers today also look interesting. You are able to listen to any event up to 24 hours after it airs. I am listening to Day 2 currently. I highly recommend the event. http://lymelesslivemore.com/live/

Have you checked yourself for mold yet? Those with persist sinus infections and don't improve with Lyme treatment often have mold issues. You can test your C4As and if they are out of range then its worth investigating. C4A is an inflammation marker. If high, it would make sense you are getting relief from steroids. The below is from the BHG website - review of the Biotoxin conference in 2011. "* When you lose control of inflammation, inflammation goes wild. If you don’t control inflammation, it will chew you up. Uncontrolled inflammation can be evaluated using C4a, MMP-9, and TGF-b1 testing. * Reduced MSH is a co-factor which can lead to MARCoNS, a nasal staph infection. MARCoNS activates inflammation. MARCoNS can also produce biofilms and biotoxins. http://www.betterhealthguy.com/biotoxin-illness-conference-2011 For me (I have chronic Lyme et al) steroids gave me immediate relief from rash/itchiness but also caused seizers.... There was definitely a trade off with them. Ozone treatments work wonders for sinus related issues. A biomedical dentist will typically inject into sinuses via the mouth to clear sinuses. Average person needs about 3 treatments. There are some Dr.'s that will provide treatments where ozone is bubbled through olive oil and then inhaled, blown in ears, etc.

Sorry to hijack the original question but wondering what the difference between near-infrared sauna and infrared. I was recently looking into the infrared sauna's for similar reasons.

Certain bacteria are known to die at higher temperatures. "Fever is part of the body's own disease-fighting arsenal. Rising body temperatures apparently are capable of killing off many disease-producing organisms" At the turn of the century fevers where intentionally induced to cure disease (I have heard of a Dr. in Germany that raises body temperature to cure Lyme.) Here is an interesting article on the topic. http://www.issels.com/publications/FeverTherapy.aspx#sthash.iyG0XA2f.dpbs Bartonella is just one of the bacterial infections I know that dies at higher temperatures of 104 plus. As both LLM and Rowingmom have mentioned die-off creates toxins which causes symptoms. Help the body to detox and these symptoms should calm down.

We have been using herbs along side antibiotics since starting treatment but not specifically Buhner protocol. In our experience the herbs have been helpful. Sometimes the herx'ing is as dynamic as an antibiotic rotation. We hope to eventually move to all herbs once we are done with antibiotic therapy. The three things I have found to be the most helpful in treating chronic Lyme et al for myself beyond antibiotics has been HD IV Vitamin C (better than IV glutathione), Ozone Therapy, Larium (powerful anti-malarial... a lot stronger than any herb used).

I am wondering which antibiotics your child is on? Iron, magnesium, calcium can bind to the Azithro class of antibiotics and render it less effective. All great supplements for restless leg but not great if its binding to antibiotics decreasing ability to treat infection. Make sure these supplements are taken 2 hours away from antibiotics. We have done so much over the years for Lyme treatment it is difficult to say what specifically helped our older son's restless leg but it is gone. Kids are on iron, D3, magnesium, zinc. We also did a lot of epsom salt baths.

Yes, I have/had these symptoms and they are predominately related to Babesia infection. The back of neck/achy feeling almost makes it difficult to hold up my head up and is typically followed by fatigue. The dizziness, vertigo, inbalance is also another strong indication of Babesia. I attribute the urinary issues and frequency to low level infections. When I applied for life insurance policy prior to diagnoses several years ago, in my urine they found an excess level of red and white blood cells which typically indicates chronic infection or cancer. I my case it was infection. I highly recommend testing for Lyme via Advance Labs once off antibiotics. If there are indications of Lyme then pursue co-infection testing.

Another interesting statistic: $100 is spent on research per individual diagnosed with Lyme Disease currently while $80,000 is spent on research for per individual diagnosed with breast cancer.