sf_mom

One thing we have done differently this year is nebulize each child with hydrogen peroxide every third day. The mix we use is .5 ML food grade hydrogen with 5 ML distilled water. Initially, we did see an increase in mood liability on the days a specific child was nebulizer. However, no one has gotten sick this year in our family, not even with a cold. It is something you might want to consider for your son especially when others are sick in the household. There is plenty of information on-line about hydrogen therapies.

We had our home water professionally tested in two different homes in the last couple of years and both came up positive for lead. The homes we have lived in are in two different cites but only about a mile apart, one new construction and one built in 1951. Was it the pipes in our older home, was it coming from the older pipes throughout the city or the city water..... we are not sure. All our children and me had/have high lead levels. In our current home we also installed a whole home filtering system and now filter out even the chlorine. The kids are definitely improving since moving but not convinced it is solely due to better water.

I thought yeast as well. I have found this particular website on yeast very interesting and is often referred from other websites with an integrative approach. I have not considered any of the products yet as we are having success with other forms of treatment/supplements for yeast. I also read recently that yeast can become resistant to Diflucan. http://www.candidaplan.com/new/what_is_candida/

It could also indicate yeast. Ammonia is a byproduct of Yeast. Symptoms could include white patches of skin usually on face, itchiness 'bottom of feet, palms of hands', eczema, cough, moodiness, fatigue, silliness especially after eating, pacing, biting nails, skin picking, etc. Fruits, sugars, carbs will feed yeast and why some crave it. "One of Candida’s byproducts is ammonia, an alkaline gas that forms when the Candida Albicans yeast ferments sugar in your intestine. Ammonia increases the alkalinity of your digestive tract, and has even been found to promote the growth of other yeasts."

Couple of things to consider. Possibly test her C4As to confirm if there isn't an inflammation problem? Consider doing a full Shoemaker panel to confirm there isn't a mold issue. Your LLMD is wonderful but he did miss an obvious yeast infection in my friend and never picked up on it for my children. Yeast/Fungus was a huge issue for us and probably still is. These would be very cost effective labs to run prior to IVIG.

I have dealt with many headaches throughout Lyme treatment but the kind that lingered the longest was pain at the base of my skull. Often it would make it difficult to hold my head up and fatigue would follow requiring me to sleep it off. Extremely debilitating at the time because it was daily occurrence and I could imagine it also being menigittis. These type of headaches are often associated with Babesia and would always intensify with antibiotic/anti-marial treatment. The headaches have almost disappeared. Sometimes they crop up a day or two after my weekly ozone treatment but I no longer have the fatigue that follows. I am only on diflucan for antibiotics that is addressing my yeast/fungus issue. Due to the headaches specifically cropping up after ozone I am attributing the symptom to treatment... perhaps die-off.

I am also concerned that your son's elevated C4As could indicate he has had mold exposure and inability to detox it. I would have an LLMD run a full Shoemaker Panel as those with mold issues often do not make much headway on antibiotics. If your LLMD has not heard of the Shoemaker Panel, I would look for another Dr. that does. Is there a possibility he was bit before the age of 8, sound sensitivity is a symptom and indication he has been dealing with this for a while.

Wonderful news. Glad you are in good hands with your team of Dr.'s. Others I know have not been so fortunate with Hemotologists. You might also want to have your LLMD check for the protozoa 'FLT 1953' via Fry Labs (its a DNA test). It is a red blood cell parasite and maybe contributing to his issues.

Have you done a comprehensive stools analysis on her? It could be yeast or low absorption. Enzymes would help with low absorption. Is she diagnosed with Bartonella? Bartonella can really root itself in the intestinal track. "Bartonellosis is generally suspected when neurological symptoms are out of proportion to other systemic, chronic Lyme disease symptoms. Patients may suffer with gastritis, lower abdominal pain, sore soles, and tender subcutaneous nodules along the extremities. Lymph nodes may be enlarged and accompanied by a sore throat. Additional manifestations may include:" - See more at: http://www.envita.com/lyme-disease/chronic-lyme-disease-coinfection-bartonella-causing-more-chronic-fatigue-problems#sthash.0iipuOuU.dpuf

I first used ozonated olive oil topically for scraps, bruises, rashes, eczema, mouth sores, etc. which was extremely helpful. Then I had a sinus infection that was ongoing for over a year and antibiotics were not helping. It took two ozone injections to clear things up. Worked phenomenally but it also turns out many sinus issues are truly yeast/fungus and maybe why antibiotics didn't help me. After such great results, checking with our LLMD, I decided to look into ozone further and found an NP in Northern CA that does all different kinds of ozone treatments. Initially, he had me breath ozone that was bubbled through olive oil. I have since added ear and rectal insufflation treatments. I do ozone once a week followed by hd IV C a couple days later... my fatigue just melted away in July and has not returned. I am fairly close to symptomless now. It turns out the ozone will help eliminate metals as well which was an issue for me. I could just smell the metals dumping after each treatment. So, right now I am in the process of re-checking heavy metals, viruses, mycoplasma, thyroid and hormones. Inflammation markers are normal and so is my Nagalase. If every thing looks good I will stop the last antibiotic I am on in the next couple of month. I should have most of my results soon. Truly the turning point in my recovery. We are having similar success with my son who had a chronic cough off and on for years... some would call it a TIC but it rapidly went away when ozone was introduced. Perhaps the ozone was getting to areas the antibiotics couldn't reach or the cough was from yeast who knows but it is gone. I highly recommend ozone with an "experienced practitioner". You can herx intensely if you over oxidize the blood cells...... so, slow and steady wins the race. You really need to build up on the type of treatments and dosage. I know they use ozone for joint issues often referred to as 'Limb Bagging' but never discussed that particular therapy with our NP. There are other more intense ozone therapies but I have had such great success with insufflation there is no need to move beyond what I am currently doing. Hydrogen Peroxide is a similar process. Here is good link that explains the oxidation process. http://educate-yourself.org/cancer/benefitsofhydrogenperozide17jul03.shtml

I've been waiting for your update. Nice to see its helping!!!! I am impressed with the improvement in his CD57 and his wanting to exercise and play soccer. My friends son is in the throws of GcMAF shots now (approximately 8 weeks) and it was a rough start as his immune system activated. His numbers were elevated at 1.2 and he is IgG and IgA deficient. They choose to treat Nagalase in advance of IVIG to see if his deficiencies in his IgG/IgA would improve. His CD57 has always been in the 20's. He is slowly feeling better and she will have a better sense on how helpful the shots are at six month mark as well. We tested our entire families Nagalase with only two results back so far. My results were surprisingly normal at .64 Our Dr. had never seen anyone with Chronic Lyme that had normal Nagalase. However, that result goes hand in hand with how I am feeling which is very close to symptomless. My recovery really turned the corner 8 weeks after starting Ozone therapy. Ozone is suppose to be fantastic for obliterating viruses. In two weeks time, I will have my viral and mycoplasma results back and will know for sure if ozone truly helped. Our older son's Nagalase is elevated at 1.3. He is also IgG and IgA deficient. He currently maintains a high level of recovery, still on antibiotics and has moments of just not feeling well along headaches which might be related to chelation. No notable PANS symptoms. We are pursuing the idea of GcMAF for him but are waiting to see if he too can be helped by ozone treatments. I should know more by spring. For your DS cough, a nebulizer along with hydro peroxide mixed with distilled water would help with cough.

Hopeny is thinking of Borrelia Miyamoto. Based on a Tick Study done here in Northern CA the prevalence of Miyamoto is much greater than BB. Here is a decent short video on it and definitely outlines the relapsing fever aspect of the bacteria. http://news.yale.edu/videos/borrelia-miyamotoi-infection-new-deer-tick-borne-disease It is fairly simple to start on combo'd antibiotics to see if you gain improvement. If you can find a good integrative LLMD they should be able to work with you on methylation, vitamin/mineral deficiencies, test for co-infections and other viruses. If you do not make gains with treatment and your child is immune deficient you might then consider other immune boosting therapies like IVIG, GcMAF shots, IV micronutrients.

If I am reading your post correctly..... Your DS flairs for a week, once a month for the last three months? Why I am trying to pinpoint the specific flairs is the Lyme growth cycle is every 28 to 34 days. Although the flair may look viral and self resolving, I am suspicious of the regularity of the flairs and timing. I too would investigate other potential infections and viruses with an integrative LLMD.

I also think Hydrogen Peroxide is good form of treatment for ears. You can mist it through a nebulizer as well .5 'Food Grade' peroxide mixed with 5 ml distilled water and hold mask to ear. You might notice a mild temporary increase in symptoms as die-off occurs.

Typically a die-off response starts within 48 to 72 hours of starting a new antibiotic. We always mark the first day of new antibiotic on the calendar and then note any little flairs, complaints, new symptoms. When reviewing our calendar we are typically able to pick up on a cycle. If you notice flairs less than a week or weekly cycles it could indicate Bartonella, more than a week to 2 weeks it could indicate Babesia and 28 to 34 days from starting new antibiotic could indicate a Lyme die-off. For example: DS started Biaxin on September 9th, he was worse almost immediately and then we noticed flairs 22th & 23rd, Oct. 8th & 9th, 27th & 28th, Nov. 10th & 11th.... So, we are experiencing an increase in symptoms every two weeks almost like clock work. He is now improved over his baseline on September 9th. However, it has taken longer than several months with previous antibiotic changes for things to settle down. We are getting both complaints of soles of feet hurting first thing in the morning and rash which is specific to Bartonella, headaches specific to Babesia. Die-off cycle indicates Babesia and since we also added in Alinia at that time the cycle and symptoms make sense. Due to the list of antibiotics you outlined I am assuming you are dealing with TBI. If so, things should stabilize and would focus on as much detox as possible when you see symptoms. When did you make the antibiotic change?

We see Dr. S at Whole Child Wellness and the same LLMD. Our twins are now 6 and would have fallen in the Lyme Induced ASD (diagnosed at 3) category. Older son PANS. I have heard good things about Dr. Chandra. You are in good hands. If Dr. H feels your child needs IVIG he will definitely refer you to the right individual for help.

Here are some good Dr.'s. In Bay Area. We are dealing with Lyme and co-infections so we also see an LLMD in conjunction with our Pediatrician at Whole Child Wellness. If you are in the East Bay I would start with Dr. Mielke. If you are on the Peninsula I would start with Dr. Raj Patel. All the Dr.'s below understand PANS, some work more with ASD community ( * ), some will provide IVIG if needed ( # ) Dr. Lynn Mielke in Pleasanton: http://www.developmentalspectrums.com * # Dr. Julie Griffith in San Rafael: http://www.mybrainhealth.org * # Dr. Raj Patel in Redwood City: http://www.drrajpatel.net/ * Whole Child Wellness: Belmont: http://www.wholefamilywellness.org * Dr. Sunjya Schweig: Petalume: http://hillparkmedicalcenter.com #

I PM'd you back. Check the upper right hand corner of your computer.

I agree with Rowing Mom. Our children had multiple chronic infections and viruses. IVIG helped our older son but six months post his last treatment I could tell it would not provide complete resolution of symptoms that we were hoping for him. He was starting to regress with blood in his stool and why we needed to look beyond just strep as the culprit. We are in our 4th year of treatment (last IVIG treatment was January 2010) and older DS's only remaining symptom is regular headaches and think that has to do with heavy metal chelation. We have found IV nutrients to be as helpful as IVIG and is a lot less expensive. He now gets hd Vitamin C weekly (strong anti-oxidant) and will provide other nutrients via IV. This particular child does have immune deficiencies of both his IgGs and IgAs. We will continue to treat him until heavy metals are resolved and nagalase normalizes. If your child is deficient in amino acids they will have difficulty making IgGs and why these particular immune deficiencies can occur and why we choose to boost him with vitamins/minerals over IVIG. Additionally, it is 'believed' if the Nagalase is elevated the immune system will have a difficult time rectifying itself. Treating his elevated Nagalase with GcMAF is under consideration also over IVIG. However, I have learned never to take any form of treatment off the table and will reconsider IVIG if we can not sustain recovery as hoped.

If Stanford doesn't work out definitely reconsider Dr. Griffith as will now prescribe in home services for IVIG. Our son is also IgA deficient and we are currently using IV nutrients over IVIG to support his immune system and it's been as helpful. Dr. Mielke is good for providing that kind of service if you are unable to find IVIG quickly. Edit: If you need an LLMD to investigate Lyme, Bartonella, Babesia and other TBI you are welcome to PM. Dr. Mielke can also help with testing for those infections. We found our kids gestational Lyme looked like ASD and treatment has been extremely helpful to them. That had all three of the infections I listed and rage was one of our son main symptoms.

There are not many that have had success getting IVIG via Stanford... only a few exceptions. Who are you seeing in a few days and I can probably give you some perspective. Unless Stanford has really changed their perspective or your child has serious immune deficiencies I highly doubt they will offer IVIG. There is one immunologist that might prescribe IVIG but I understand he is currently out for an extended period. See below: Your best bet for IVIG is Dr. Julie Griffith and Dr. Schweig. Dr. Griffith has an in-depth understanding of ASD/PANS while Dr. Schweig probably see more PANS children and not as many ASD. All the Dr.'s below understand PANS, some work more with ASD community ( * ), some will provide IVIG if needed ( # ) Dr. Lynn Mielke in Pleasanton: http://www.developmentalspectrums.com * # Dr. Julie Griffith in San Rafael: http://www.mybrainhealth.org * # Dr. Raj Patel in Redwood City: http://www.drrajpatel.net/ * Whole Child Wellness: Belmont: http://www.wholefamilywellness.org * Dr. Sunjya Schweig: Petalume: http://hillparkmedicalcenter.com #

ALA 'apparently' does not cross the BBB in doses under 200 m.g. We did SpectraCell Vitamin/Mineral testing to determine our DS deficiencies and its was recommended he take 100 m.g. of ALA per day. We have been doing chelation and one of my son's remaining symptoms is regular headaches. I imagine the headaches are caused by the metals/bugs moving out of his brain.

We used a comprehensive stool analysis for testing. You can also test for yeast other ways (Blood and Saliva). I like the comprehensive stool because you know which strain of yeast you are dealing with and which remedies are useful in treatment of specific strain. The stool analysis will also look for parasites, other opportunistic bacteria, level of good bacteria so which strains of probiotics might be helpful in re-establishing gut flora and if digestive enzymes are required for absorption of vitamins and minerals. The comprehensive is more expensive than the blood or the salvia test but again provides a lot of valuable information. We re-run comprehensive stool at least once a year. Obvious signs of yeast are white coated tongue, white patches of skin usually on the face (this could also be vitamin/mineral deficiency), eczema, itchy soles of feet, palms, rectal area, etc. A black coated tongue is fungus. Yeast will convert to fungus. Here is some good information on yeast. http://drmccombs.wordpress.com/2009/10/29/10-candida-myths/ We have treated yeast with both nystatin and diflucan plus other herbals remedies. Even with ongoing treatment, I believe we are still dealing with yeast but we did see improvements with initial treatments. Diflucan will treat other underlying infections as well like Lyme. We did notice a die-off phase with treatment so an increase in symptoms. When we first started treating yeast/fungus our DD broke out with ringworm followed by a full body fungal rash between weeks 3 to 6. We had no other indication DD had a yeast/fungal issue until we did comprehensive stool and started treating. Older DS had some periodic eczema, itchiness, white patches of skin and positive stool analysis. Younger DS had a black tongue at one point and positive stool analysis.

Dr.'s in the Bay Area. All understand PANS, some work more with ASD community ( * ), some will provide IVIG if needed ( # ) Dr. Lynn Mielke in Pleasanton: http://www.developmentalspectrums.com * # Dr. Julie Griffith in San Rafael: http://www.mybrainhealth.org * # Dr. Raj Patel in Redwood City: http://www.drrajpatel.net/ * Whole Child Wellness: Belmont: http://www.wholefamilywellness.org * Dr. Sunjya Schweig: Petalume: http://hillparkmedicalcenter.com #

Here are two in the Bay Area: Both are good and dealt with PANS, each has their strengths. http://www.developmentalspectrums.com http://www.mybrainhealth.org