JuliaFaith

A parasite protocol is what really started getting rid of my sons's fatigue (been thru most of this twice now). Then after that, treating his nasal staph pretty much got rid of the rest of fatigue (unless he is flaring). Most of his 'minimal OCD behaviors' (except maybe bedtime) were gone by the 3rd month of treatment (After CORE, gut healing, parasite protocol). He has not tested for Bartonella which may have something to do with this. Son is also on Arteminsin which affects him greatly. Have him on 200 mg a day and pulsing 1-2 days a week at 400 mg. He really feels bad when we get up to 400. Does this treat viruses? Seems like it might. He did take a Glutamine supplement for about 4 months in the beginning of treatment. We did try the B12 shots recently (to help son with fatigue and just feeling good), but he broke out in an ugly looking rash so had to stop. Dr. did not know why he had the rash so now dh uses them (and loves how he feels!-came home smiling after work 2 weeks into using them and is going to continue for now). Best wishes on healing your daughter. Will be interested to hear about the CFS information. Thank you for your input.

Still looking for any ideas on virus treatments (mainly the HHV-6; CMV; Epstein Barr). Son has been on Valtrex for at least a year but these viruses just will not go away. Now we have a choice to make, both of them are very expensive. First is the prescription Valcyte (used for cancer/HIV) which is another anti-viral which means it keeps the viruses from reproducing as much (is my understanding of it). The cost is going to be about $2500 for the first month and insurance will pay for it after that. The second idea is this GcMAF treatment which is from a blood product and is supposed to help decrease the negalase which helps get the immune system restarted. This is being tried by BetterHealthGuy.com and he is blogging his treatment. It sounds a bit scary to try on a 14 yr. old but he is having some success. Cost around $900/month. Treatment can take 8-20 weeks of treatment. Did get some great ideas (Famvir, Engystol, & Viragraphis)on here before (thank you!) and brought them to the doctor. She said that they all would be pretty much like the Valtrex son has been taking. Any new ideas out there would be greatly appreciated. Thank you.

Thought this might be interesting to some of you doing KPU treatment right now. http://betterhealthguy.com/joomla/blog/175-an-update-on-my-kpu-treatment

First, thank you for all you contribute on this forum. Your posts are very helpful and informative. On the biofilm side, my son as been drinking 'rock rose tea - Cistus Incanus' tea 2-4 cups per day for over a year. It leaves a dry feeling in your mouth but the flavor is not bad. My son has taken it with honey, lemon juice, clay (yes, he says it makes it taste even better). It seems Michael on this forum also has really liked this tea. Hard to tell what affect it has had on son, but he is still testing positive for continuing its' use. Buy it from BioPure for ~$35 for a good size bag (250 grams) of it. Best wishes on continued healing!

The total for Group I are indoor molds. Group II typically outdoor molds (that make their way in the house in various ways). A score of 9.9 is on the higher end of the scale. Did you do any of the HLA tests (blood work)? If you are genetically susceptible to not being able to detox mold very well, a certain dr. recommends, that to heal, your house should be at 2 or below. It is good to know what mold is high per the report, because then you have a better idea where to look for it after researching and finding out where that mold likes to hang out. Our 2 highest indoor molds were Aspergillus restrictus - 670; and Wallemia sebi - 750. The chemist at Mycometrics said that the 670 number was one that he would be concerned about. On our report the Aureobasidium was 1300 (I guess this was our highest), and after researching it I found that it is typically found in laundry rooms/bathroom/calking and causes repiratory irritation. The penicillium brevicompactum was 350 on my test. So your numbers are looking a bit on the high side for sure. We looked and found mold ourselves in a bathroom and kitchen when we remodeled them. The rest of the house has already been remodeled so we did not have a lot of places to look there, although mold can grow within 2 days! Still finding it growing in different places. In our area, we have to be mold vigilanties as it tends to grow anywhere and everywhere. Just found some in the tray under my refrigerator and on the end of new molding that is next to the shower, and a little bit in the downstairs windows. This is after cleaning the house top-to-bottom just a few months ago! It is another thing to deal with but everyone will be healthier once you can get rid of it. Some of the molds cause cancer, kidney failure, and damage to vital organs. Good luck!

What a great description of ART Michael! People always ask me what it is and I do not even know how to begin to describe it. My son has been doing treatment using this form of diagnosis and he is healing slowly from many different things and seems to be at baseline or better most of the time [except with Areminsin which brings it up another notch]. It seems that ART testing is always right on when lab tests are done periodically to confirm treatment. There are different levels of ART testing. They go from level 1 to level 4. I believe, 4 is the highest, most experienced practitioner. Also, when son's doctor sees a new patient or is sick herself, she has someone else do the testing with her to make sure it is most accurate. Best wishes for your 22 yr old. I have a 24 yr. old that seems to be relatively healthy and hope we do not have to go down this road for him too.

Just looked at son's protocol from a year ago and doctor had him off all supplements for 5 days before KPU test. On the testing information sheet it says 'do not take vitamins especially B's and minerals.' Also says 'exposure to normal daily stresses is needed (no stress-avoidance or rest).' Hope this is helpful.

Per doctor's orders son as been on VSL (no longer requires a prescription - $45) but currently taking Supernatant (Therapeutic Foods). It contains supernatant (not sure what this is) and several probiotics. $51 - 60 capsules - son takes after breakfast/dinner 2 tabs. 2xday. So many to choose from! Son has had stomache aches for 1 1/2 years and they are slowly improving with treatment. Nothing diagnosed so probably lyme and all the rest of his diagnosis's.

My son was prescribed Alinia as an 'antimicrobial' but I believe it has several different properties so does does a lot of different things at once. This was at the end of worm/parasite treatment. Dosage was 500 mg 2xday with meals (probably adult dosage). The first time ds was on it for 14 days after worm/parasite treatment. The second time, after worm/parasite treatment again, he was on it for 4 weeks. Our insurance only paid for 6 tablets! So we ordered it thru: Marks' Marine Pharmacy in Vancover BC 1-877-888-9265 and was able to get a generic version from the UK thru them for $95 for 1 month. It was way more reasonable than the US. Currently checking into getting a generic version of Valcyte (anti-viral) possibly thru them as well at 1/4 the cost of US. Hopes this helps.

The tray under the refrigerator is pretty easy to take out once the grate is removed. Usually, I do this in the summer when it is warm and the smell really gets a bit strong. yuk! Got rid of all but one wicker laundry basket, just in case, when we did the entire house clean-up. Thanks for mentioning it, will check the bottom of it again! Mold can grow within 2 days and it just seems like a constant job in the great NW! A bit overwhelming at the very least.

Was so greatful for discussion on the washing machine and mold, thought this might be helpful as well. There is a tray under the refrigerator that holds a little bit of water, if necessary. Could smell some mold in our newly remodeled kitchen and thought it might be there and sure enough there were a couple of patches floating in a little bit of water.

Your statement struck a cord with me because this is exactly what I was saying 1 yr. ago. After doing some DNA tests and researching Dr. Shoemaker, I found that for my son's results there is an indication that he has difficulty excreting mold & lyme toxins, and that he would not recover from lyme on abx alone. He is seeing an ND who is using abx, natureopathic, & some homeopathic meds. all combined and my son is slowly getting better after 1 yrs. of treatment. Expensive but so glad we took this route after no success with PANDAS and were looking at IVIG as our only remaining option with nothing working up to that point. Hugs to your family and especially your son!

Bought 'American Health' which is not organic. Looked for organic but could not find any so will try dr. dispensary on next visit.

Papaya tabs are my son's favorite. In vitamin stores or organic groceries they have nux vomica (homeopathic little sweet balls you put under tongue) which my son really likes as well. He was prescribe a fizzy vitamin C powder once but really did not like it. With a flare-up these help a little but he generally has to go on the BART diet (bananas,applesauce, rice,toast) since not much helps the nausea. Good luck!

Also, anyone used this for virals (EBV, HHV-6, cytomeglovirus)? And did you pulse for this as well? This is a good question as we are treating for around 3 virals right now with little success (Valtrex) after several months. Also, did not know that ARteminisin is an anti-viral med.

I do believe he also said that taking the artemisinin liposomal may well avoid that affect. Not sure how familiar you are with that, but true liposomals are made with use of ultrasound technology, which may sound fancy but can be purchased via a $30 jewelry cleaner. He discussed/recommended this during the conference. You can find liposomal recipes on the web without too much effort, I think, although if anyone wants direction on this, let me know and I'll try to point you in the right direction. I did do that for a brief period so I have a small amount of experience with it. Liposomal compounds basically have the special thing (artemisinin or vitamin C) somehow inside a fat molecule, or something like that. Your body (or body's cells?) can absorb the fat more readily, and then, bam, the other thing gets absorbed quickly as well. Babesia may well love the fat and be attracted to it, and then you have a surprise waiting for it. Anyway, the liposomals sort of avoid the regular digestive process, and perhaps that's how you avoid making antibodies to it. He also showed making a "cocktail" with artemisinin and a bunch of other yucky tasting stuff at this conference. He put phospholipids in the cocktail as well, and, as they are a necessary ingredient in liposomal compounds, he charactarized the cocktail as sort of a low quality liposomal mixture. Thank you Michael for this explanation. I believe this 'cocktail' is exactly what my son has been taking, we just added in the Artemisinin a few months ago.

Just to throw something else out there...when my son was treated for nasal staff his fatigue almost disappeared. It does get worse when he flares up though.

With the CORE son started at 2 capsules with a meal and worked up to 4 eventually. He tested negative for KPU.

Stomach aches have been pretty constant throughout for my son but have decreased in intensity since starting lyme treatment. When he has a flair tho, he does say that it hurts worse.

Michael - Good to hear you did so well with the Artemisinin. The time-frame for taking it is interesting as well. Thanks again for the feedback. Wendy - I wonder what is with the grapefruit juice? Am lucky my son loves grapefruit juice even tho he cannot stand the 'cocktail.' Wishing you all a better new year this next year!

You are right that CORE is expensive. Ds is taking about $700/month+ in non-prescription meds which is difficult to say the least! Do not know anything else that would supplement for this but just checked and my son was on it for 4 months and then taken off of it. Not sure if this was after another hair sample was done where he was showing more absorption of vitamins. Soooo it could be a short amount of time that you may need to be on it. Will keep my fingers crossed for you.

I used Nutricology's Super Artemisnin product, which, per capsule, contains 180mg of artemisinin and 20mg of the sweet wormwood oil. On days I took it, it was 3 capsules with breakfast and 3 with dinner, so roughly 1200mg daily. These doses for me were based on energetic testing. I did find it interesting to note that I had read somewhere the relapse rate is much better with daily use of 1200mg compared to 400mg or 800mg ranges, based on some study. This might have been in Buhner's book, I don't remember for sure. Of course, if 1200mg daily is too rough then perhaps working up to it is wiser. Wow - 1200 mg! Just brought him down to 200 mg/day. How long did you take that much? How did you do during that time? It sounds like we should go back up to 300 mg on my next batch of 'cocktail'. It could be the energetic testing the dr. did to get to 400 mg. Thank you again.

Aidan does not swallow pills. I use artemisinin in capsule form. I feel awful as it tastes soooo bad, very bitter. I mix the contents of the capsule in liquid fish oil of all things and make him take it with a syringe. I think the fish oil actually takes a bit of the edge off. I also choose to mix it with fish oil becase it seemed easy to mix with oil and also the mepron he is taking is supposed to be taken with a fatty snack. I don't really consider fish oil to be a snack but at least it is fatty! I can't always count on him eating a particular item I offer him but at least I know he is taken the Mepron with some fat!!! Bur it is by far the hardest of all his meds to take. I wish he would learn to swallow pills - so much easier for him. So good to hear that Aidan is showing some improvement! Interesting pulsing too - thank you for sharing. You sound very creative in getting the meds in him - that is great. At the beginning of all of this, my son could not swallow pills at all and you are so right about it being bitter! Your comments about the ADHD and impulsiveness sound so familiar. Have thought it was some adrenal herb he was on and other herbs. Is that typical behavior with babesia? Makes home-schooling interesting to say the least. Best wishes on treatment.

Good luck on the fever and sicknesses. How is it going with the BEG spray? My son just felt better during and after taking it, at least in the fatigue arena.

So SFmom you are using a pill form. Thank you for sharing. Son is using a crystallized/powder form and mixing it with water/grapefruit juice (1 cup water to 1/4 cup juice), virressence, quintessence, lipoic health powder, and Lipo C (probably some support for other things in this mix!). Mix for 2 min. with a mixer then put in a jewelry cleaner (yes...) for 15 min. because it does something on a molecular level that I am not advanced enough to understand. Put it in the refrig. and use for 2 doses (actually, I double the mixture). It is so bad tasting, but my son plugs his nose and drinks it and now chews on papaya enzyme to get rid of the taste. I think the pill form would be a bit easier. lol So good to hear that the two of you are actually making headway after almost 5 months. Not sure how long Babesia takes to treat on average. It is nice to have some flexibility in treating so herxing is not going on all the time, while others do not have that option. I wonder if it makes treatment take longer? Best wishes for you and your family.