sf_mom

You might try the following. Enhansa and Maxi Flavone. Maxi Flavone is a TNF-alpha blocker and great for general inflammation issues (also used for infertility). Enhansa is curcumin. I've attached links to both and have been very helpful to our children. http://leesilsby.com/enhansa-homepage https://www.drmyatts...MaxiFlavone.htm

L-glutathione (we like the original flavor... not orange flavor) Promotes Detoxification Glutathione also helps the liver remove chemicals that are foreign (xenobiotics) to the body, such as drugs and pollutants. The highest amounts of glutathione are found in the liver and kidneys, which are responsible for the removal of toxic components. Glutathione possesses the unique ability to bind to toxins, heavy metals, solvents, and pesticides - and helps the body excrete these substances in either urine or bile. http://researchednutritionals.com/store/item.cfm?code=CRN129

Page 23 of attached slide presentation by Dr. Ann Corson LLMD discusses self mutilating behavior as a symptom of Chronic Lyme in adolescents.

Azithro/Rifampin/Cedax.

If you are going to patch you might as well make it fun. My kids liked 'just' the different colors offered and not the decorations. http://funeyepatchkitsforkids.com/Home_Page.html

I am going to throw a few things out there hoping you'll investigate them with your LLMD. When we see sudden regressions or treatment stalls our LLMD starts to think predominately 2 things: new exposure or what co-infection are we missing. He explained it to me that it is like the game of 'Whack a Mole' you beat down the Bartonella and potentially one of the other co-infections takes predominance. So, what was working in terms of antibiotics is now no longer working. In our case, that happens to be Babesia or BLO like organism even though we lack positive results in two children. It doesn't seem as if you have had a recent illness so I am wondering if you are missing a co-infection with current protocol? It is also unclear how much you let up on Lyme treatment and if you treated for biofilms yet? You might consider testing for Biofilms and BLO via Fry Labs (FL 1953). FL 1953 is a Biofilm forming BLO which would requires an anti-malarial. Our son who was not positive for Babesia did show indications of FL 1953 via Fry Labs plus a substantial biofilm problem. I believe the test was $280 or $380 prior to filing with insurance. A couple of things to tamp down inflammation without having to use steroids would be: Enhansa or Maxi Flavone. Maxi Flavone is a TNF-alpha blocker and great for general inflammation issues (also used for infertility). Enhansa is curcumin. I've attached links to both and have been very helpful to our children. http://leesilsby.com/enhansa-homepage https://www.drmyattswellnessclub.com/FertilityMaxiFlavone.htm Of course, if you are dealing with Lyme and not checked for KPU I would highly recommend investigating that as well.

We also had frequent urination and high urine PH at the beginning of our PANS journey. We were fortunate at that time to be referred to a nutritionist that understood how to normalize PHs via detoxing the body. So, for over two years we have been tracking our kids saliva and urine PHs all while being on a daily detox regimen. The way she explain abnormal PHs to me was to make the analogy to a fish tank. When a fish tank is appropriately oxygenated and the PH Balance is normal there is no excess bacterial growth, the tank remains clean and fish thrive. When the PH is off and/or not properly oxygenated the tank turns typically green, bacteria thrive and fish have difficulty surviving. Our internal body PHs are very similar in concept. What we eventually discovered is our children suffered from multiple chronic infections that triggered their PANS. Bacteria throw off tons of toxins. These toxins then cause the body to be more acidic creating an environment ripe for further infection. Our laundry list of infection ended up being long and kids were very acidic. There are some good books on body PHs. Most of them recommend specific diets to normalize PH and most food I'd probably never get my kids to eat on a regular basis and why helping the body to detox made more sense. Anyway, I would keep looking for chronic infections not typically found in urine like Mycoplasma, Lyme, Bartonella, Babesia, Viruses, Yeast/Parasites (via comprehensive stool analysis), etc. I am sure you've already checked for strep. If you search the forum there is a ton of good information on detox but a good start is drinking lemon water. Eliminate all sugary drinks 'very acidic'... Switch to green juices if possible like Green Goodness and Naked Green Drink as they have a ton of detoxing green foods in them and much more alkaline. Edit: Normal urine PH is 6.2 There is a wonderful Lyme Dr. that talks about the need to normalize PHs as well and his name is Dr. Klinghardt... Here is some information from him and we follow the saliva and urine PH guideline outlined by him. pH - normal pH for urine is 6.2 with .2 up or down fluctuation (6.0 to 6.4). It should go up and down within that range. Saliva pH should be around 6.7 or between 6.5 and 6.9. Often times the difference between the two is too narrow or there is an inversion/reversal. When the saliva pH is higher than the urine pH, acids are not getting out. Longer term, this could be a sign of kidney failure. When one has an inversion, homeopathic 12x Phosphorous or Standard Process Phosfood may be good options. http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme

We have/had lazy or wondering eyes as well. The lazy eye came on suddenly in two children. These are our eye exams from over the last couple of years for older DS, 20/40 (4 years of age), 20/50 (5 years of age), 70/100 (age 7 and lazy left eye). We ended up patching the one eye for about a year before and after school. He is now 8 and his vision is now 20/20 in one eye and 20/30 in the other and expected to fully correct. The lazy eye and vision problems occurred when we 'started' treating for Babesia last year. I would have chalked it up to a coincidence with timing of Babesia treatment but then we started treating younger DD for Babesia and the same thing happened. She almost looked cross eyed and her eye was much worse than older DS. The eye wondered often and wasn't consistently lazy. It was very strange. It too has 'almost' fully resolved with treatment. We were only able patch her eye a few times. We did not vision test her like older DS.

Interesting. My friend was having issues 'initially' with anti-malarials and sulphur based antibiotics. They were able to desensitize her to anti-malarial medication so she could treat Babesia plus MSM 'natural sulphur' was also very helpful to her. The symptom list also reads like Babesia and I wonder the cross over. My son was on Ketitofen for over two years which is also a 'mast cell' stabilizer. Also widely used in Autism community for similar purpose and worth investigating.

I agree.... think parasites and of course Babesia. Plus treat aggressive for the two during full moon cycle.

I think the Alinia is working and your son's immune system is probably a little stronger than my younger DD!!! We too had great results with Alinia but did not manage to get converted results for Babesia. Remember her twin is PCR positive for WA-1 and this is gestational Lyme for her. There is no doubt she has Babesia in my mind or both LLMDs. However, her test results keep coming up negative but her IgG 1s were in the 200's and her WBC was also very low. In my experience it can easily take a year or longer to treat Babesia. We have given treatment a break recently (treated 10 months) and it is evident she needs to be retreated again. In my experience, it is a very long road to recovery with Lyme et al. Wishing you all the best. We have noticed marked improvement in all the kids once we were past the 4 to 5 month mark of treatment for Babesia.

Obviously you are not done with Bartonella treatment and if the Bartonella has not cleared the Lyme is probably still there as well. We are two years into Lyme treatment (not currently doing any hdIVIG) and have also seen Bartonella rashes appear recently on two of three children (just this morning after bath for one child). It is a difficult recovery process and your DD's increase in symptoms are most likely a herx response to recent rotation in antibiotics. Have tried any natural anti-inflammatories, yet? If not, I would highly recommend something like Enhansa. It has been extremely helpful to my kids. http://leesilsby.com/enhansa-homepage

I agree treating Babesia can be rough for at least the first 4 months sometimes longer!!!! We too experienced the resurfacing of rages right out of the gate with younger DS and the appearance of OCD in younger DD (never suffered from OCD previously). Thankfully, the OCD resolved fairly quickly for younger DD and the rages seem to be settled for younger DS now and he is in his 5th month of Babesia treatment. We just tried to take down younger DD on antibiotics and she only made it 10 days before we needed to change back protocols..... it is becoming obvious that her Babesia treatment was not long enough at almost 10 months. Colleenrn: You are fortunate to have converted test results so quickly!! We were hoping DD would have converted results but hasn't yet. However, her IgG 1 and 3 were extremely low, her white blood cells also very low and think she has a difficult time mounting a response. Its interesting as her CAM Kinase II was the highest of all my children but she didn't have any elevated anti-neuronals, both boys did have anti-neuronals and both had more PANS presentation with OCD/TICS. Couple of things I've learned about Babesia. Mepron/Melarone deletes CoQ10 to disable or starve the Babesia. One of our Dr.'s feels it is vitally important to supplement with CoQ10 when NOT using anti-malaria drugs to give them fighting power to fight the Babesia when treating. Plus its needed to effectively fight other infections. However, some will argue you feed the Babesia when supplementing with CoQ10 when not treating for it. You should NOT be supplementing with CoQ10 when actively treating Babesia because you would be canceling out anti-malaria drug. Be aware that the depletion of the CoQ10 can cause what is referred to as Mepron Blues 'depression' and why some Dr.'s prefer pulsing treatment. We did not experience the blues with older DS or younger DD when treating for 10 months to 1 year but my friends son was definitely very depressed when they finally gave Mepron a break after about a years treatment and switched to Alinia. Edit: I wouldn't worry too much about tests results IgG verses IgM but more follow symptom resolution at this point. Again, if you are dealing with many infections it should be more of a 'Whack a Mole' concept and you may have to treat Babesia for while give it a break to focus on Bartonella and then retreat Babesia etc. I'd follow the Low WBC and symptoms over IgG/IgM test results (results will change, antibody response will come and go as you treat).

Geez Sptcmom.... Its nice to see your update! As you know, we've all learned a lot from each other over this much longer than expected journey. I often imagine all the thank you's owed from Dr. K who even speculated chronic infection verses auto-immune with me several afternoons while my son got hdIVIG treatment, to DP who told me this was an illness that we could do something about, to my father-in-law who is an old school Dr. and helped me slog through medical research, to the inventors of the internet. It is our shared experiences and I mean truly 'shared' experiences that is getting our kids well and hopefully others to follow. It is unbelievable but I now have a team of Dr.'s who believe in the notion of infection triggered mental illness and not pure genetics or auto-immune: a DAN, 2 LLMDs that look at the issue slightly different while both adding value, a biomedical dentist, a osteopath, etc. Anyway, I wanted to attend ILADS this year and hear you speak... along with Dr. T on PANDAS and all the other speakers. Unfortunately, I just can't make it but am already hopeful of hearing some good reports back. Good luck!!!

Older DS: 1. DS can get sick and show a normal immune response - NO increase in PANS type symptoms 2. He lives a normal life. No one would know he was sick or suffered from PANS 3..He has two symptoms: Sighing or air hunger, complained of headaches/wasn't feeling well after starting homeopathy for bartonella Younger DD/DS: 1. Still work in progress but no longer considered ASD and meeting all their age appropriate mile stones. Family: WE ARE GETTING OUR LIVES BACK!!!

I know there is a lot of overlap but given symptoms and your DDs inability to come down or off antibiotics I too would suspect Babesia. We have one positive WA-1 child who is a twin. His twin sister and older brother are negative for WA-1. We did recheck DD last year to see if we had converted results but she was still negative. Because we are dealing with gestational Lyme we were fairly convinced all them had Babesia but truly did a lot of additional stuff to confirm diagnoses: herbal challenges, stool analysis - Babesia might show up as unknown parasite, treatment responsiveness, Fry Labs protozoa FL1953 positive as well with biofilms, ART muscle testing, etc. Our kids really lacked any obvious physical symptoms other than low WBC in twins, occasional night waking/night mares and temp intolerance that was very obvious in older DS as outlined by Wayne Anderson with bed covers (why I like his symptom list). Night sweats only occurred once we treated. I too am negative for Babesia but my predominate symptoms screamed Babesia with thigh pain, headaches, rashes, dizziness that would cause me to fall over or horrible dizzy spells 'like bed spins', etc. Prior to diagnoses I had been to urgent care for dizzy spells and told inner ear infection. Anyway, Babesia treatment is rough but also rewarding. The first four months of treatment we definitely saw a worsening of symptoms with resurgence of OCD especially for younger DS or appearance of OCD for DD (she had not had prior OCD just anxiety). Our younger DS is on 1 tsp Mepron x 2 daily and Alinia for both Babesia and parasite. However, once past that first four months things seem to slowly improve with all the kids. Our older son who was treated for one year for Babesia with Mepron and herbals is doing well, we gave Babesia treatment a break in June and are focusing on potentially remaining Bartonella/Lyme. As of today, his only symptoms are temp intolerance, occasional sighing or air hunger when he plays soccer. It is a new symptom within last couple of weeks and easy to compare with other kids running up and down field. The air hunger is obvious and I am convinced the Babesia is not gone. I am looking forward to talking with our Dr. at next visit about the new symptom. One of our Dr.'s often describes TBI treatment as the game of 'Whack a Mole". You beat down the Babesia and Bartonella symptoms surface, you then beat down Bartonella and Babesia symptoms surface. Of course, hopefully you are treating Lyme all the while a little. I have found this concept to be true for my children and hence maybe the resurgence of Babesia symptom for older DS. Anyway, I thought I'd list what we did for herbal challenges: Enula 20 drops x day over 4 days or similar with Crypto Plus and watch for herx. I am glad you are working towards Babesia treatment but think you need to give it "at least 4 months if not longer". It takes 120 days to replace RBC and you are not going to get all of it in the first four months (as much as I'd love for that to happen). A friend of mine is also on Proguanil and having success.

Not to hi-jack thread but Rowingmom your DD has a lot of Babesia symptoms. I was wondering what your Dr.'s position on the possibility of treating. From your signature, here is what sticks out as Babesia: dizziness, chills and hot flashes, nightly fevers, pick like headaches 'especially if they are behind eye', pain and stiffness at base of skull 'usually includes stress in shoulder area can make it hard to hold up head'. Here is one of the better symptom descriptions for Babesia that I have found for BLO. Notice it is a Babesia like organism BLO. You are only able to test for two strains of Babesia and there are 17 known stains. http://www.wayneanderson.com/pages/diseases/babesia

I had C-dif twice last year and both times when starting Tindamax. It was thought by one of our Dr.'s the C-dif was bound up in biofilms as tindamax treats biofilms. He is an LLMD and has seen correlation between C-dif and the introduction of tindamax many times. We too use higher doses of probiotics (even higher than 450 billion CFUs) with strep thermophilus in it and never had a problem. We regularly do comprehensive stool analysis via Metametrix to track 'good' bacteria in gut and all the other stuff results provide. Over the last two years, even though our children have been on two or three antibiotics at any given time their 'good' bacteria continues to improve. The 'good' streptomyces sp and mcyoplasma sp in gut is now well established. With your stomach and gall bladder issues I would be checking for parasites via Metmetrix Comprehensive Stool Analysis and Lyme plus co-infections via Igenex or similar TBI specialty lab. In the comprehensive stool analysis they check for C-dif, H-pylori and others. Plus you'll have an understanding the status of good bacteria, inflammation, absorption issues (enzymes), etc. It very common to have GI issues with both parasites/Lyme and might help determine how DD is impacted as well. I am attaching a link to Metametrix and their sample report so you can understand what they look for in their test. You have to request kit and have Dr. sign off on it and they return results to Dr. http://www.metametrix.com/files/test-menu/sample-reports/GI-Effects-GI-Function-SR.pdf

Glad to hear things are fairly well minus the strep issues. It also might be biofilms in nose and the strep keeps releasing back into tonsil area and reinfecting. You can do a nasal swab to test for bacterias (might also be causing what appears to be allergies). The friend of mine you spoke with... they found 5 different bacterias that way hence biofilms. I also wanted to let you know we just started homeopathy for Bartonella similar series on top of antibiotics protocol. Our younger son flaire'd immediately!!!!! We still have a ways to go with the series but I am hopeful it will help.

If she tries anti-virals, symptoms improve and titers drop.... it would give her some confidence that it is an issue. In my opinion, it would need to be at least a six month trail treatment course. You need to think of viruses as the overall load and not as past infection. You will always carry the virus and may always have some type of titers. I am more curious as to how high her son's titers are and if he has more than one strain similar to my kids that have high titers and several strains. We did not show physical signs of Coxsackies (maybe heart related issues in one child) until treated with specific anti-virals then had mouth sores (all children) and coxsackies sores appear on one child's rear end as a response to treatment. There are herbal formula's specifically for Coxsackies and we've used this under the guidance of our Dr.'s. Again, a good integrative LLMD or Dr. who treats Autism biomedically would have an understanding of how to treat these types of viruses and explain results to her much better. V-C By Bryon White: http://byronwhiteformulas.com/ Edit: In regards to your question about amount of "OCD"... I'd read more on Dr. Ts theory on alternative fever response.

Norcal Mom: Here are our older DS Coxsackies results. I do not have younger DS's in front of me. He is the one with heart related issues and LLMD said at time WOW, his titers are really high but I do not remember count. The following results are from last Feb/March. Results are from Lab Corp., blood drawn after treating with anti-virals for almost 1 1/2 year and listed as IgG/IgM Antibody. Negative is considered Neg: <1:100 My understanding is you will never fully eradicate these viruses. You can lower load and render it non problematic 'hopefully'. Coxsackies A7: 1:800 "HIGH" Coxsackies A9: 1:400 "HIGH" Coxsackies A16: 1:800 "HIGH" Coxsackies A24: 1:200 "HIGH" Swarmie: Our younger boy/girl twins were given tentative diagnoses of ASD at 2 1/2, also have low IgG 1s and IgG 3s, mineral deficiencies and mitochondrial damage, etc. They are now 5. It took us a very long time to fully understand all their issues but in a nut shell we were dealing with a bunch of stuff, not just one issue. One had language regression, sensory issues, high anxiety, low weight and muscle tone, etc. The other was extremely smart with photographic memory but also suffered from OCD, rage behavior, sensory issues and had aneurysm's 'no sudden on-set'. The older son suffered from 'sudden on-set' of PANS after strep related illness. My children are not biologically related to each other but all were carried by me in-utero. They all have similar infections and viruses to me. Sometimes when you are dealing with ASD, it is important to test the mother to see how the child is infected. When a child gets infected while in-utero they often are weak antibody responders because the body does not recognize bacteria as foreign. You might recommend to your friend she see an LLMD that also understands ASD from infectious position as they have some good tricks to figuring the depth of chronic infection and understand tests that don't specifically look at antibodies.

We have been dealing with Coxsackies Virus (3 different strains) for 2 years now and have a recent outbreak already in older DS class. All three of our children have gestational Lyme et al. Older DS was originally diagnosed with PANDAS in August of 2009. Younger DS has heart related issues and is probably from the combination of Coxsackies and Lyme. It is common to find Coxsackies as co-infection to Lyme and in ASD children. We have been treating continually for 2 years with different anti-virals. Treatment has definitely helped but titers remain stubbornly high and treating with anti-virals wasn't the complete answer either. I do understand that Dr. T has been finding a lot Coxsackies recently and I applaud him for testing. However, I would be shocked if Coxsackies is a stand alone issue. Do I think it could be a possible trigger for PANS, ABSOLUTELY!! If I had positive Coxsackies and a PANS child and anti-virals are helpful but not the complete answer I would continue to dig further for other chronic issues. We did experience a worsening of symptoms when initially treating with anti-virals and when they have been rotated. The worse before better is often referred to as a herxheimers response and mostly associated with bacterial infection but we also experienced with anti-virals. Our experience was the worsening of symptoms could last for weeks. I think if you continue to look further in the Lyme World or ASD World you'll find much, much more on the research and discussion of Coxsackies.

Sorry to read you had another tough day. It could be a new exposure, it could be a herx or it could be you don't have enough coverage for current infections. Unfortunately, it will be trail and error with your treating Dr. until you figure it out. However, we have experienced horrible rages as a result of a herx response along with increase in OCD for several weeks at a time (sometime months). I know, I know.... its scary but it does settle and baseline eventually improves. Since I recommended natural anti-inflammatories yesterday, I thought I'd post a link to good one that crosses BBB. http://www.ageofautism.com/2009/08/enhansa-curcumin-supplement-helping-families-treating-autism.html

I have been dealing with what looks like to be staph... not confirmed MRSA. I was getting little sores that itched like crazy, like bug bites under my skin that would develop into sores. Taking natural sulphur along with antibiotics helped tremendously. Also taking baths in MMS (not FDA approved but very helpful to us) to contain topical spreading on me and then to other family members. I have also been dealing with sinus and gum infection that might also be staph (or combination of stuff - biofilms/parasites/infection) since last February. My gums have been receding over canines for last 15 years. I did not recognize as infection and our old dentist wanted to graft gums to resolve issue. I opted to live with the issue as it wasn't that bothersome. We started to gargle with MMS to stave off spreading of bacterial infection that entered household in August and the side benefit was my gums started to soften and lower after 15 years. Although not fully resolved sinus/gums, I am hopeful it will be. Anyway, our LLMD is taking the sinus/gum infection very seriously and I am working up to new protocol which includes Augmentin XR/Avelox/Melorone. I am getting a lot of relief from the Augmentin XR already and have not rotated to full protocol yet. Minimally, you should be try to contain staph in household and not pass back and forth to family members. If you are uncomfortable using something like bathing in MMS speak with your Dr. on how you would handle exposure in household. Your son is on a lot but I would still expect a herxheimer response given the infection and addition of antibiotic. Wishing you all the best in dealing with this.

I definitely have friends that have gone the SSRI route with success while treating chronic infection. However, we too have leaned towards using Tryptophan, Gaba, Kavinace, etc. You might also consider some natural anti-inflammatories as well. I am also wondering how aggressively you are treating for KPU currently. Heavy metal dumping can occur as a result of treatment and cause inflammation hence increase in symptoms. If you are treating KPU you need to have something to mop up the metals like chlorella. The metals can then also cause yeast and fungus to grow. A circular rut. If you are treating watch for white tongue for yeast and black tongue for fungus. I only know this from first hand experience with younger DS and treating KPU.