JuliaFaith

Interestingly, my ds and dh have tested "no" on our multiple vitamins, which are very good and liquid. They were both prescribed 'Mila' seed which you can get in most organic food stores. It has to be soaked in water for at least an hour and forms a gelatin consistency. You can use it in cooking (nutrients not diminished by cooking), smoothies, with juice. I even put it in cookies! It is touted as the "world's healthiest whole raw food".

Before my dh started his treatment (last week) he was taking chlorella and salmon oil to start detoxing. We are hoping this will speed up his recovery time. Have found 2 great sources at good prices if you are interested just PM. It seems detoxing can help with the flu-like symptoms as well. Another idea may be drinking rock rose tea (cistus incantus) to start to break down biofilm so when you can start abx again they will be able to go to the source quickly. My older son really liked Gaia Ginkgo Leaf for brain fog. Someone else on this forum mentioned speaking to your doctor and seeing if you can make payments and just communicating with those involved to see if anything can be worked out which I thought was at least a try. Sending strength and wellness your way!

So sorry your CD57 test is not normal yet. Is a normal range on this test indicative of the GcMAF working or done working? Just curious if the numbers on your CD57 increased at all? Son has not done this test since over a year ago so would be interesting to run again. We are waiting for the K MAF to arrive so have not tried yet, but will be using it in conjunction with Valcyte so not sure if that would work. I wonder if your body is just used to the GCMAF injections and knows that it gets more from those than the K MAF? Son is also starting Thorne K2 for inflammation. Very interested to know about your 'pendulum testing' again. On my own, tried to learn some beginning muscle testing stuff and it is real interesting. Not sure how to use it on my son though. Good to hear your updates. Will send healing wishes your way!

Agree with philamom on slowing down your treatment a bit. Warm wishes and healing hugs to you!

Energy was the biggest improvement that I noticed. He also got rid of a cough and anxiety went down but he was being treated for several things at once so not sure if it was just the parasite treatment.

lessEMF.com has different products. Also, stetzer filters are interesting. Bought these and meter to read emf #s. (~$500) The wire-less phones we use in the home are really much worse than cell phones. Someone told me they are like a jet airplane in EMF exposure.

Thank you so much Michael for this information! Sometimes it gets tricky trying to figure out what all is going on and there is only so much time during a visit to get everything in that needs to be addressed. So good to hear about your GcMAF injections working for you. Will really be looking forward to your progress report! Will send healing thoughts your way.

Here is a wikipedia website for ADH which may or may not be accurate but has a lot of information in it: http://en.wikipedia.org/wiki/Vasopressin Not sure if this has to do with his thyroid problem or many other things mentioned in their description. Could see possible benefit in many areas... Asked dr. about l-lysine and she said we could try it but she thought son was past that point after his other treatments. Best wishes on trying it - will be good to see how its' working. I think our whole family went thru that cold too; hope everyone is feeling better soon! Was really good to see my son respond like everyone else though! Your right about needing something to feel optimistic about - glad you are seeing that something!

Saw the doctor yesterday after deliberating over our next step in treating the viruses. Basically, after trying Valtrex/natureopathic/homeopathic meds. with no improvement (for at least 9 months or more), decided to try a bit of both of our choices. Doctor and I both had the idea to ART test both the Valcyte and GcMAF. Both tested very high. So right back to the beginning of all the deliberation. Decided to try Valcyte (ds14 is at least 140 lbs.): dr. said treatment could be 6-9 months; she said that fatigue is mostly what her patients say about side effects; says the patients feel fatigued for that 6 months (or whatever time frame) and when she takes them off of it, they feel great. The short time-frame on it was another factor in going this direction, along with the cost of it mostly being covered by insurance (still on many other supplements etc.). Also decided to do the K-MAF (another version of GcMAF) homeopathic from the EU (www.biopure.eu/USA). So basically, doing both treatments, although the homeopathic version may be a bit different than the injection version (not sure how?). The cost is 36 euros for this compared to the injections which would have been ~$900/2 months. Dr. also asked that we order the following from the same place: K-OXY (oxygen?) K-METHYL (methylation?) K-ADH (like vasopressin which son is also being treated with?) Also, adding 'Matrix Minerals' for the anti-viral treatment. Forgot to pick this up, but curious how different it is from the CORE; and Thorne K2 for decreasing inflammation in the brain which we did at the beginning of all of this treatment as well. Son is dropping the Valtrex, Artemesinin (thank goodness), and rock rose tea (for biofilms) per ART testing and continuing improvement and/or done in most other areas - good news! Also, asked how he is testing for MOLD which has been an issue. Looks good for Mold! but still testing for heavy detox. Dr. said it could take 2-3 years of detoxing after being around mold. Of course, HLA testing showed a decreased ability for detoxing so it all correlates well. We will be doing the ERMI again soon just to make sure our house is healthy. Hope some of this helps for those of you debating some of the same issues. Best wishes on continued healing!

Just happened to glance on this forum today after being away for a while, so glad I did. Thank you for your thoughts. You are a wonderful person and I can totally relate. Your children and husband are so lucky to have a person like you in their lives. Best healing wishes!

Ds has been seeing an ND and treated mostly with natureopathic & homeopathic supplements. He has been on Alinia a couple of times, thyroid (natureopathic presently), Valtrex, & some anti-parasitic prescriptions too. Alinia is the closest thing to Abx. that he has been on during his 14 months of treatment with this doctor. Treatment for Lyme/Babesia has gone very well and he is showing signs of improving and getting rid of the 'big bugs' per doctor. When we started with this doctor, we really did not know what all she would find (except PANDAS). The list has gotten longer as treatment as continued (peeling the layers of the onion). On that note, what I really like about her treatment is that it includes the best of all 3 types of medicine, which has been a good way to go with my very ill son. She goes the 'least harmful' way for his body which, I believe, has kept extreme herxing to a minimum, but not afraid to pull out the 'big guns' when needed. In addition, some of his supplements have not only been treating his illness but healing affected organs & giving him needed nutrients. It has been expensive going this route though, since insurance does not cover any of the supplements. Our current challenge has been getting rid of the 'smaller bugs' - viruses. Hopes this helps. Best healing wishes.

My son gets the generic Valtrex: Valacyclovir HCL tabs 1000 mg and we cut them in 1/2. He takes 1/2 with breakfast and 1/2 with dinner. Used to have to wash red food coloring off of them before using but now they are white.

Another underlying reason can be nagalase enzyme levels too high. Viruses create nagalase so you vitamin D binding protein (that binds vitamin D with macrophages) is not created in the body. Supplying this protein, by injection, or now available homeopathically to tell body to make it, can solve the problem and kill the viruses allowing nagalase levels to eventually return. This protein is known as GcMAF, for use with injection, but recently available as homeopathic, much more affordable and no injection, through BioPure in Europe as Homeo K MAF. If someone is caught in that vicious cycle, it's nothing lysine is going to fix up. Is the homeopathic K MAF really available to us? This is a question I have for our next dr. visit. Thanks Michael.

I keep wondering about arteminisin and its' anti-viral properties. Son has been on it two times now for a total of about 4 months. He still reacts with worse flu-like symptoms when he gets to 400 mg a day. Currently, he is on 200 mg a day and then 2xweek I up it to 400 mg. This is an attempt at giving him a few good days in between but there have not been those good days much lately no matter what dosage he is on. Can go up to 600 mg a day, but have yet to try it. Also, has been on Quintessence (BioPure brand $88 - Andrographis; smilax, stephania root, Japanese knotweed, & Red root) for probably about a year now. In addition, he has been on Viressence (BioPure $70 - melissa; st. john's wort, oregon grape root, lomatium dissectum, golden seal, echinacea, ginko biloba, cilantro, & myrrh) for about the same time. Make a 'cocktail' with these 2 liquids, along with Artemisinin, and Lipo Health, & grapefruit juice. These are mixed and then put in 'jewelry cleaning machine' to make them quickly absorbed in the body. I make a 2-day batch and put the extra in the refrigerator. I believe this mixture is treating several things at once, not just viruses. Sure gets expensive! From what I have read, some of these mixtures seem to be partially based on Buhner's work. Then we add Valtrex in there and it appears we have about covered everything possible. Except for detox, 60 chlorella a day & salmon oil. I believe the chlorella might have anti-viral properties as well.

LLM - I am with you on the Valcyte much less for a 7 yrs. old. Sorry to hear your daughter is getting worse. My son may be too as he has very 'few back to baseline' days recently. Our only other choice right now is the GcMAF treatment which is really new and so not sure if it would be what son needs. Doctor seems to think he is doing well with the 'large' things but not improving with the smaller one (viruses). So you would think his body would kick in (immune system) and start on these viruses as well. None of the Valtrex, natureopathic etc. seem to be doing the job. lismom - Really wonder what role the viruses are playing in all of this. Most people have them, but keep them 'deactivated.' Our kids seem to have 'activated' them and cannot get them deactivated. Their immune systems are just not ready to tackle these guys! Son is going on 2 yrs. of having flu-like symptoms with 14 months of lyme etc. treatment. Improvement has happened in all of his other areas except this one. Will visit doctor this week and maybe have more answers. You know it is tough to beat when a ND prescribes something like Valcyte! Thanks for your input.

Been researching Valcyte anti-viral medication and seem to end up in the CFS category quite often. Symptoms seem very similar to my son's. Next visit, will see if doctor knows which of the 3 viruses son has shown to have (or had) are 'activated'. Seems important to look at this as the heart is affected as well. Long-term treatment has included "Cratoxy" which is for the heart. Anyone else run into this?

Reading notes on a conference that betterhealthguy has on his website and saw this. It seems like some on this forum were having reactions to KPU treatment with CORE and thought this could be why.

Just found this today and thought of those of you who have a difficult time getting children to take tabs/liquids to detox. http://betterhealthguy.com/joomla/products/detox-foot-pads

Great posts - very informative. Thank you all. sptcmom - Can you tell us a bit more about the Biotic 880 Biophoton therapy?

Looked up the GcMAF again and it was quoted as being $900 for 2 months per dr. Are you still using it? How has it helped? Thanks again Michael.

So I'm a bit confused - it sounds like you've gotten rid of a lot of viral issues and you haven't tested for Bart. I mentioned the methylation stuff assuming that fatigue was a major issue, as it is for us. But doesn't sound like that's the case. I'm not sure I understand why you feel you only have two expensive options left. Sounds like the artemisinin is doing something. Why not test for/treat Bart? What are the issues you feel you can't conquer without Valcyte or GcMAF? Are staph and parasite/worms viral? Had not thought they were but if so, then yes he does appear to have gotten rid of those per ART testing. Have not done any additional testing to see if they are there still or not. As far as I know, son has not tested for Bart per ART testing. We have not done any of the official lyme tests (beyond the western blot) to see for sure what he has. Just figured out that he has been on Artemisinin for a total (had to stop when T&A done) of 4 months now. He still reacts with a flare (more flu-like symptoms then he usually has) when we get up to 400 mg. He is taking 200 mg a day every day and we pulse the 400 mg 2 days a week. Not sure if we have exhausted this approach? He also take Valtrex (1000 mg) a day, and Viressence (maybe Quintessense?), and who knows what else in his supplements. Not sure if any other ones are anti-viral. Doctor is saying that the viruses are just not going away and has given us these 2 choices to look at. She has already written a prescrip. for Valcyte. Son's issues are continuing muscle aches, headaches, nausea, headaches, lack of concentration/memory. These apparently vary in intensity depending on whether he is flaring up or not. Thanks for your input, I really appreciate it.

Still has some at bedtime and when we have to start to school work (home schooled). He is also 14 so not sure what is puberty and what is not. Other than that I do not notice any.

This makes sense, since my son had a stomache ache/nausea for a year before we started with this dr. Anxiety, also was one of his symptoms at the time. I wonder if those with excess glutamate do not have stomache/anxiety issues?

Cannot remember if you are using ART testing? I have every supplement that is not from dr. dispensary ART tested before using it on my son to make sure it is pure. Do not need any add'l metals, bacteria etc. after working so hard at clearing them out. Also, if you are doing ART testing, from what I have read, many things can disrupt their ability to diagnose well, i.e., fatigue, illness etc. Son's dr. has another person 'assisting' with the testing if it is the first visit, she is not well, etc. There are also different levels of experience (levels 1-4). Interesting comment on the dosage for Valtrex. Son is take 1/2 tab 2xday at 500 mg each. Will check dosing. Detoxing has been going on for over a year and hair testing has shown more metals etc. coming out thru the hair which is a good sign son is getting rid of them. Son only tested 'needed' for glutamine for ~4 months. What are glutamate blockers? Are you referring to the GcMAF shots? If so, that is one of our choices right now. Have been following BetterHealthGuy.com blog on his experience. At $900/month for at least a few months of treatment (and maybe more) it is rather expensive. A bit invasive with blood from other people too. Thank you for your input.

Is 'pleo' a homeopathic med? My son has never had strep but has had a T&A and still gets sore throats. He is on alliopathic, natureopathic, & homeopathic meds/supplements right now, so we are covering all of that at the same time. You would think all of that would work. What did your son take for his cmv, ebv, hhv6? So glad to hear your son is doing so well! Enjoyed reading your posts on the PANDAS forum. Thanks for the input.