JuliaFaith

Would definitely look at www.gcmaf.eu site for info. While BetterHealthGuys blog is informative his gmaf information may be a little bit out of date now. Son's starting dosage was .05mL 2xweek. Some start at even lower dosages. My last posting on the brain inflammation has some discussion on macrophages which gcmaf addresses. This was very good to see as support for doing the gcmaf treatment. Two vials of gcmaf and 6 months of treatment at my son's dosage was about $1600 (includes shipping costs). Although I have heard that you can buy smaller amounts at a time through Dr. B. I was very glad we worked with a doctor on treatment since inflammation can be difficult. Sf_mom--would be interesting to hear about test results. We did see some improvements right away but am also wondering if improvements will continue as body gets healthier. This treatment is supposed to last a lifetime, at least for some.

Hello Ophelia--am so sorry your having such a tough time, sending healing thoughts your way. Have heard with many treatments that you can get worse before better. May I ask if you are detoxing, taking probiotics, and fish oil? Have you checked for methylation issues. Very important to be able to detox. PM me if you would like me to send a care package with these 3 things in it. When we started this journey my ds seemed to present differently then a lot of others on this forum. Mold was one of the reasons (besides lyme etc.). Have you or your doctor read about Dr. Shoemakers discoveries? Bone broth is something that has been written about a lot lately. It has good vitamins/minerals and great for gut. We save all chicken bones, crush them and boil for a while. This along with cilantro (if you can) tastes pretty good and really good for you. You can also boil other bones after crushing. We buy organic beef soup bones just for this purpose too. The cilantro is an anti-parasite which you most likely are dealing with as well. Miso is good to add after cooling a bit too. Just throwing some simple but effective ideas out there. These seems to be my mantra, but we know first hand how helpful this stuff has helped us get through treatment. Know that there are many of us out here that are wanting you to heal and hoping that you are headed in that direction right now. We will try to help with problem-solving now and celebrate your healing with you. Take care.

S_fmom--that is really too bad that your friend's son had such a big reaction. The first month was the most difficult for my son. Because of the difficulty we went low and slow the entire treatment. In 4 months son was at .87 (started at 1.3) which surprised doctor. Dr thought it was because of all the other treatment beforehand that helped. We continued through 6 months just to use it up and then son had a minor flare so took him off immediately. My dh used the rest of the injections (only 1 month left) per doctor. Extra inflammation was always present but after first month and not increasing dosage it was a bit more tolerable for the remaining treatment. Supplements, claritin, and alkaselzer gold (sp) were very helpful. Son was also on Valcyte the first few months of treatment. Muscle tested that he did not need it after that.

Have heard great things about this doctor as well. I wonder if my doctor's office has consulted with him some on gcmaf. So excited for you. Our doctor wanted nagalese below 1.0 ideally. My dh went from 2.7 (really high) to 1.5 just with bacterial treatments and supplements. Since he is pretty healthy he will not be doing gcmaf at least not right now. Since my son had been ill so long, he did the gcmaf with nagalese at 1.3.

Will be good to hear your experiences! Just shared my personal notes and info. on gcmaf with my son's other MD (not the one who prescribed it). She is very interested for herself and patients. So far the biggest change from the treatment for my son are the viral symptoms that have abated at last. This is huge after trying for almost 4 years to get rid of them.

Depression, seizures are also mentioned in article.

This is a fascinating article by Mary Ackerley, M.D. which plainly discusses the brain/depresssion/macrophages. At the end there are recommended treatments: Vitamin D, fish oil, probiotics, magnesium, turmeric, and of course, diet. http://paradigmchange.me/wp/?p=596 Here is just one section of the article: "Hypothalamic-Pituitary Axis Here’s some more basic science about what we are looking for in the brain when we talk about inflammation. This is a diagram of your brain. It’s looking at your hypothalamus and pituitary. When you look at Dr. Shoemaker’s model, he’s going to start with damage in the hypothalamic-pituitary axis. It’s that damage that leads to the decrease in hormones that we often see — the decrease in androgens, the decrease in cortisol. Sometimes, as Dr. Shoemaker will say, you’ll see an increase in cortisol, which is your body’s last fling at trying to correct things before you sink into the decreasing cortisol. This diagram shows the relationship between cortisol and brain inflammation and the cascade of events that happen subsequent to stress. In this diagram it’s labeled as stress. Stress can be from many different things, such as interpersonal difficulties. Early adversity is something that is well-studied in psychiatry. Having abusive childhoods is very common, more common than anyone would like to think. This will lead to changes in our ability to secrete cortisol. This leads to changes in cytokines of something called Nuclear Factor Kappa Beta. It flourishes. That increases inflammation in the body. The inflammation in the body leads to excitotoxicity. That’s another word for anxiety, really. It decreases neurotransmitters and also causes depression. There are several agents that can cause this kind of depression besides stress. Biotoxins would be big ones. Others would be heavy metals, food allergens and viruses."

ND says Alinia should take care of everything and that going back on chlorella was a great idea.

Throughout my sons 3+ years of treatment, the ND talked about strep showing up on muscle testing. I would always remind them that he had never had a positive test. A few weeks ago son saw ND and with muscle testing she said he had bacterial and parasite issues. I ordered meds from Canada because too expensive for 20 day treatment here with insurance. Takes 2 weeks to get here which is not great. Two days later we are at PANDAs doctor doing neurofeedback and she recommends strep test. I remind her he has never had it. She tests and it is positive! We started abx right away. A bit more 'pandas symptoms' than other illnesses but not as bad as his 'trigger' which is walking pneumonia. Physically healed in a week but 2 weeks later some mental issues are still a problem. ND says that testing positive is a good sign. Not sure if it is an indicator that biofilms are not an issue or that having tonsils out has helped? Two days ago started Alinia (anti-bacterial/anti-parasite). So interested to see if that helps. Also put him on chlorella again for extra detox. Waiting to hear back from doctor on other ideas. Do not know why but brain issues are ds main complaint now and not flu-like symptoms like in the past. This has been the case after doing the gcmaf treatment. So a good thing. Weird!

So sorry your son is having so much pain! My ds is almost the same size as yours and he had horrendous headaches in the beginning but not the pain. Fish oil: Want to make sure it is high quality so you do not get more heavy metals in the system--we are currently using Nordic Naturals. Jarrow brand supplements have always tested well too. Clay: My son used this in the beginning of treatment. It is really good for getting rid of heavy metals and detoxing. 30 min. before meal or 1 hour after. Ds took oregano and curcumin (called CurcuSyn) capsules (at different times) for inflammation. All of this helped a lot although with naturopathic supplements they may take a while. All of this type of treatment along with thyroid meds, adrenal support (supports hormones), lyme and co-infections treatment, he slowly got rid of headaches. The Anti-parasite treatment showed the quickest positive result in the beginning. It seems like others on this forum have dealt specifically with scalp pain before...will see if a search turns up anything.

It does take a team to make sure our kids are healthy in all ways. My ds15 is lucky enough to see a psychologist that talks to the PANDAS doctor downstairs. He has been going over a year now (bi-weekly presently) to her and the visits have helped a ton. We looked for one that worked with ill children which seemed necessary after trying a few others. She said " be glad you are doing this now" because she also sees older Panda kids and knows of the possibilities of not seeking mental health help.

My whole family nows goes to 'Sophia Health Institute' where Dr. K practices. We have had the option to see. Dr. K but have stayed with other practitioner as we have had excellent results with her (and she is much less costly). If we had not had very good results with her then definitely would have seen Dr. K. They all get together weekly to discuss patients, so you really are seeing everyone in their office anyway. Dr. K is only practicing there 6 months out of the year. It seems most patients come for a week so they can see him multiple times and get treatment at their spa for detoxing, IV etc. A patient I talked to last week was surprised to hear of the aggressive treatment with prescription meds as well as naturopathic and homeopathic. They use everything and more to heal people. PM me if you have any other questions.

Curcumin is a great anti-inflammatory (ds was on it for several months early in treatment). It may be helping but you may not see it. You could do the tgf-beta1 blood test to check inflammation, although it can fluctuate day-to-day. Have also heard that milk thistle is a great detox. With all the toxins in our environment, any detox is only going to help in the long run. Our whole family is detoxing daily now and will probably be the rest of our lives. Love these two additions that your doctor made.

This is the link to Dr. Kl. radio show (near bottom of page). There was an outline of the info. he covers but it was replaced with the actual show. Very interesting to hear his thoughts on auto-immune. WARNING: Lots of parasites and heavy metals discussed. Organic food does not contain as many toxins so you may want to consider as well if you are detoxing. http://oneradionetwork.com/health/dr-dietrich-klinghardt-reducing-toxins-and-parasites-in-the-body-march-4-2014/ Cost wise, treating for heavy metals and parasites can be inexpensive. So easy to try even if you do not believe in all of doctors' ideas. Detox: Chlorella (whole seeds--Costco $14 for 2 months) (ground--Spectrum brand at whole foods ~$20)--these are the two we use daily; milk thistle; nettle tea etc. Heavy Metals/parasites: Cilantro/miso/water (just make sure water is cooled a bit before adding miso)--every night; Supplement if you want: Mimosa Pudica (Ayurvedic Herb)--Can google Dr. Kl. and get the dosage he recommends--3 month treatment. Keep Healing!

You all are way over my level of medical expertise but here is a product that two of our doctors are now prescribing. Both my ds and dh take this now. Ds usually just takes at night but sometimes in the morning if needed. This cream has a lot of ingrediets that you all are discussing. Calming Cream by-- www.neurobiologix.com Their Neuro-Immune Stabililizer is also prescribed quite frequently. Dh takes it every day (methylation issues) and I take 3xweek for 'cellular reasons.' They are both creams so easy to apply. Cost is around $53 for a bottle.

Great list above. Mold was also an issue with my ds. He has been detoxing the entire treatment. There are several options you can find just searching on this forum under "detoxing." He detoxed with chlorella for 3+ years until his last visit. Chlorella could be hard to digest but there are some that area easier than others. There are tabs and powder. Now, he is detoxing with Spectrum ground chia seed. One tablespoon in juice/water/tea/food a day. Both of these are also good for detoxing metals. Ds is no longer 'muscle testing' for mold (after remediation and detoxing). Have you done the 'hair test' for metals and vitamin absorption? Have you done the KPU urine testing? Have you checked for parasites? These are things that our ND addressed at the beginning of ds treatment. Omega 3's for inflammation have always been in protocol as well. Best wishes on treatment!

Very entertaining and interesting for the open-minded.

If she is interested: www.gcmaf.eu From what I hear or read, gcmaf is currently being clinically tested in the US for cancer treatment. Some people do regular treatment and this to make sure they stay healthy afterwards. They also have a clinic where they treat those with cancer. There is information on their website. Wish the best for her!

We now use 'Manuka Honey' mixed with distilled water for 'sinus maintenance.' About a tsp./1/4 cup. My dh uses it once a week (frequency recommended by doctor-more often is not recommended) and my ds was using it until we started swimming in a salt water pool. It seems many people with chronic illness have this staph in their sinuses. Even when we got rid of it using 'BEG' spray recommended by Dr. S, it came back. So we try to do maintenance treatments which seems to be working, along with supporting the immune system with various supplements (Gaba mushrooms is one we currently use). Hope you can find some answers for the headache. Ds's went away with lyme treatment. Here is an article that describes 'sinus maintenance' and has suggestions: http://www.betterhealthguy.com/sinus-health-and-cleansing

My to-do list includes making a health 'booklet' taking everything I have learned in the last 3+ years. This would be something my family would hopefully use for continued wellness. If I ever get to it, will share with anyone on this forum, with a disclaimer that I am not a doctor. ;-)

Omega 3s, probiotics, detox (ds does chlorella & chia), gluten free, organic. These are the main parts of all of my families's health now (not just PANS son). Other supplements and prescriptions change as needed. We make sure to buy quality products so we do not introduce more toxins which can be challenging. Our local VitaminLife store has excellent workers who really know the quality of different brands of supplements (and even have free seminars on many topics discussed on this forum). They are on the web and maybe national?

My ds has been through GCMAF treatment. Our main purpose for doing the treatment was for high viral numbers (lingering symptoms) and to train immune system. Treatment was about 6 months at a low dose. He had already been treated for many things before starting it. About 2+ years of treatment so he went into it fairly healthy. Now that he is done with it, his baseline is much higher than it was before. Physically, have not seen him this healthy since before getting ill several years ago. Mentally, still working with neurofeedback and supps for brain support. Curious to see how this year goes for him as the injections are supposed to last a lifetime. If you are interested, the Nagalese blood test is only $65 and could provide you with another part of the puzzle. If results are high (over .60-.95 depending on doctor) then you and your doctor can make some assumptions. Bacterial and viral loads are just 2 things that I know of that can make this high. Website for product WWW.GCMAF.EU may give you more information. While you can order it yourself, would highly recommend doing treatment under the care of a doctor.

Thank you so much for sharing! Frequently, I have thought of posting something similar but could not find the right words. You have found the right words. This condition has taught us to have more empathy and love for those around us. So, as usual, something beautiful as arisen out of something that horrified us at the beginning and keeps us going during any relapses. Big cyber hug to you!

First thought seeing your title for this thread is GMO foods! Not that these are the only foods with bacterium, I guess...???

Lots of good info. on this thread. We also had to deal with mold. Testing for it is a really good idea. My son tested positive thru ART muscle testing and was started on anti-fungals pretty quickly. There are other ways to treat it too. After remediating a bit for mold (attic was the worst), he has not been testing for it. Although, after 3+ years of treatment he is still detoxing with chlorella and other things. Thyroid was off in all of us and dh had lung/sinus issues. With your entire family having issues, having an ERMI done may open the door for more answers. Ds CD57 was 25 when we started all this and after 2 1/2 yrs. of treatment, he was at 48. Viral numbers have also been high the whole time. So we checked nagalese and found him high at 1.3 (.9 or below is healthy). After 3 months of gcmaf.eu treatments (for virus/immune-system) his CD57 went up to 70! Pretty quick jump! Doctor wants to see it at 100. So wondering how viral numbers have been? All of us will probably be detoxing one way or another the rest of our lives just because our environment is very toxic and so are our bodies. Hope you can find more answers soon. After 18 months of treatment for lyme/co-infections/mico etc, my son was testing 'healthy' until he had a PANS flair which added another year of treatment. Have you looked into anti-parasites? Our lead doctor thinks this is huge in a lot of chronic health issues. Easy way to treat daily: cilantro put in boiling water/simmer for 10 min, turn off and cool a bit, add Miso. Drink every evening. Tastes pretty good. Sincerely, your out-of-the-box forum friend!