JuliaFaith

If you are talking about the tests that I mentioned, they are not "PANDAS" exclusive so it seems the word "PANDAS" was making doctor uncomfortable. Any good doctor could run any of the tests mentioned. Most of them could be done with one blood draw. A top LLMD is a good lyme literate medical doctor.

My son and DH are on Vitamin D3 complete which has Vit. D, A, & K2 in it (AllergyResearchGroup). I believe the vit. A works along with the D somehow and if I remember correctly, the K2 works with the brain somehow. Now I am taking a D3 only supplement and the doctor has me taking MK-7 (Jarrow) with it to help with absorption. Also interesting, as I was looking thru old notes from 2 yrs. ago, my ART doctor said that "ds should not be taking vit. D." This was at the beginning of treatment so it must have been feeding something that we were trying to get rid of (lyme--babesia?)

So sorry your family is going thru this right now. You are doing the right thing and I am sure you will find some answers soon. Blood work tests (ideas): Viruses (i.e., CMV; HHV-6 etc.) Mono (EBV virus) MTHFR (ability to detox) Thyroid (TSH+T4F+T3Free) Kidney (BUN/Creatinine) Liver (AST/ALT) Vitamin D WBC/RBC (white/red blood count) TGF-b1 (inflammation level) CD-57 (if low indicator of lyme) C3A (low--indicator of lyme) C4a (high--indicator of infection) Lymphs (if high shows high viral load) Non-blood work tests: Hair Test (byDoctor's Data--covered by insurance--heavy metals/vitamin absorbtion)***HUGE*** KPU (byVitamin Diagnostics--urine test) Parasites (any test recommended by doctor--we just treated for these since they are such a common issue) ***HUGE*** Definitely agree with taking a good probiotic and detoxing which you have probably already started. These are just a handful of tests that we have done that showed a lot of what is going on in the body. Best wishes on finding your way through this healing journey.

D-mannose is a supplement sold at most vitamin stores. It is used to support bladder and urinary tract health. We used just this until we found out about the infection. Then he was on abx and D-mannose. It cleared up quickly.

This may be a different case, but last time my son started peeing a lot Dr. had him do a urine test that came back positive for an opportunistic bacteria that she was not used to seeing. He just started again so I immediately put him on D-Mannose for urinary tract support and hoping we can wait another 1 1/2 weeks for appt. His Dr. recommended this course of action. His symptoms have stopped but will keep him on this until appt. Our whole family is on good probiotics daily even though none of us is on abx. Hope you find relief quickly!

At the begin. of treatment my ds took mk-7 along with vitamin D3 to help with absorbtion. He has been taking 'AllergyResearchGroup' vit. D3 complete that also has vit. A and k2 in it as well. He no longer needs to take the MK-7 anymore. They are 2000 IU each. Not sure if they can be ordered on line. Will check. We are all on these right now to get levels up.

Hi Dedee: All I can refer you to for ART testing is on the following website. These are all Dr. Klinghardt trained doctors. If you scroll down on the page there is a list of practitioners. I can only comment on doctors in his office per our experience. http://www.klinghardtacademy.com/images/stories/event/certified_instructors_may_2013.pdf If this link does not work, then you can go to www.klinghardtacademy.com and on the left side is a link for certified practitioners. Julia

So glad to hear you found something that helps right now!

Most everyone has deactivated viruses. When the immune system is not working properly they become reactivated. The anti-virals my son has been on (Valrex and Valcyte are two) prevented viruses from replicating. After 4 mos. on Valcyte last year son had 6 weeks of 'feeling better' then relapsed. Had a bad bike wreck and dental work and other things that were part of it. Now we are trying Valcyte for 6 months ($174/month with insur.) along with gcmaf. He is once again feeling better and ART testing healthy. Second time in 3 years. We have our fingers crossed that it will continue. Treating viruses aggressively has been the last step in treatment. We did treat with Valtrex while doing lyme treatment

http://www.realfarmacy.com/eliminating-the-parasites-that-you-almost-certainly-have/#KqzhdK1l5c5ct83Q.99

We go to a dr. in Dr. Kl's office so I can only speak to what I know. They are called 'Sophia Health Institute' if you want to look them up. We have been going to their office for 2+ yrs. They will only take you as a patient if you are mostly eating just organic food and are open to all types of medicine (allopathic/natureopathic/homeopathic). They use every medicine/treatment that is available and treat aggressively. He does go to Europe every other month, so some of their treatment is unique, but has been used there with success for some time. He does seem to specialize in chronic illnesses and autism. He started and heads up a neurological clinic in Europe somewhere too. The ART muscle testing he uses and teaches is amazingly accurate (at least with our Dr.). It seemed strange at first but they can tell a lot of what is going on the first visit. Every organ is ART tested for stress along with thyroid/adrenal etc. every visit (along with lyme, co-infections, parasites, worms, bacteria, viruses etc.) We started treatment with de-worming/anti-parasite meds. and h Pylori testing along with hair testing for heavy metals and vitamin absorbtion. Every supplement/meds that you take (and there are many and expensive) is tested against the patient to see if that is what the patient wants/needs. Detoxing starts from Day 1. You will leave the office with an entire sheet of suggestions (this gets smaller as you get healthier. Almost our whole family goes to this office now because there is no guessing, only what your body needs at the time. Have heard that the first visit is usually with 3 drs. so it is quite expensive and lasts at least 1+ hour. Do not know how much. The other drs. in the office apparently do not charge as much but the one we go to is excellent. They all consult and talk to each other about cases etc. once a week. Cost per visit goes down in price after first one. You have to pay the day of visit and they do not deal with insurance at all. I submit claims and get reimbursed for a portion of every visit. The supplements I deduct on tax return for medical costs. Hope this gives you an idea of what to expect with this office. PM me if you want any add'l info. Best wishes on finding someone to help with healing!

Have you looked at 'Chiari Malformation Type II' before? Just read an article on this and it reminded me of you. Hope you find a good hospital!

Oh, just remembered that I have heard that the Manuka honey also kills MRSA and staph!

These are really good prices! I paid around $40. Thanks for this info.!

We originally saw Betterhealthguy.com mentioning it and decided to try it. It seems as soon as son is off anti-fungals his ear(s) start hurting and dh has sinus issues. Dh actually researched it and we all started using his mixture (1-2 tsp. Honey/4 oz distilled water) in refrigerator. I would think it would work on abrasions as well. It got rid of my stuffed ear in 2 days with 1 drop each night. Dh says it seems to be helping with sinuses and just started using 3 days ago on son's ear and there was no pain last night. May just use it every times he gets out of bath. If we use on sinuses it will only be once a week. Oh, also used in tea for sore throat and it felt so good and gone quickly. Supposed to be antibacterial/anti-fungal/antiviral. It does have a medicine taste to it. We did get one that is mgo400+ or higher (or 15+ or higher-different brands). This is what was recommended in my dh research. We love it and so inexpensive when diluted! I should do a commercial!!! Lol

So sorry you had such a poor experience. Our Dr. office will only see patients who are open to their treatment methods and they have other requirements as well (all organic diet). We did do 'hair/vitamin testing' and it was very informative regarding heavy metals and vitamin absorption in the stomach. After some treatment, we did another (insurance paid for this test) and found that more heavy metals were leaving the body in the hair and that vitamin absorbtion had increased substantially. Good confirmation that what we were doing was working. Have not done the test again. Hope you find healing in whatever you decide.

When I went looking for a 'good' doctor that could treat lyme (did not know about LLMDs) I just found the most famous one on-line that happened to be close to my house. He is an MD which is what I was looking for since I had no knowledge of any other kind of medicine. Since he was booked out pretty far, my son ended up with an ND in his office and they all practice ART (did not know what this was at the time). Now, 2+ yrs. later no one in my family goes to any other dr. I tried recently because of costs and ended up with my son's dr. because there is just no comparison. There are 3 levels are ART testing that Klinghardt teaches to other doctors. So you would want to know what level the practitioner is at in the training and the length of time they have been doing it. There are other 'muscle testing' techniques but I can only speak to the one that Klinghardt teaches very basically (we see a dr. in his office). The first visit to the dr. for testing, I was, you might say, intrigued by the testing. The Dr. has my son lie down on the bed with arms stretched over his head and systematically ART checks every organ, facial area etc. down to the stomach area. Then she puts each testing kit (lyme, co-infections, parasites, mold etc.) on a 'platter-plastic' to see if he tests 'yes' or 'no' for that bacterial etc. Then she put different supplements on that platter to see which one his body wants for treating that particicular infection etc. Then the supplements that he is taking are checked in the same manner. At first it was hard to believe that this would work. Now, I am a true believer. Every blood test that has come back confirms her diagnosis. She was able to start treatment right away while we waited for blood work to come back. They do have certain protocols, if you will, to treat for certain things but they always ART test every product, with you, before you take it. This office treats the entire body. Detox is a given at the beginning and continues throughout treatment. This ND uses every kind of medicine (prescriptions/naturopathic/homeopathic). The supplements are very expensive (more than dr. visits) but one supplement treats many things at the same time. They are also aware of costs so do find ways of getting lower costing treatment/medicine if they can. They do have some 'machines' for treatment but my son has never used any of them. They charge extra for those and most are located at a 'spa' away from the office. Hope this helps, it is a bit difficult to explain. Let me know if you have any other questions. '

New best product from vit. store is Manuka honey! Its anti-bacterial, anti-fungal, antiviral. Got 15+ or higher for $45. Mixed 2 tsp. in 4 oz. distilled water. Can gargle in throat, put in tea, use for ear drops, nose drops (once a week after first 2days). We are so impressed with this. Would be awesome on your poor throat right now! take care.

Have not been able to get on this forum much lately, but have always appreciated such 'smart', talented, incredible, caring, and loving moms! Thank you for all that you contribute on here! Regarding the GcMAF-- The first weeks were difficult in terms of OCD intrusive thoughts, but it has mellowed substantially since the beginning. We did stay at the .05mL 2x/week dosage for the entire time so son could do school work. We switched to night-time injections because it made him sleepy. Some people do morning injections because it helps them sleep better at night. We just upped the dosage to .07mL 2x/week this last Wed. since school is out and have not noticed any increase in PANS symptoms. His initial symptoms before starting this were flu-like symptoms. Dr. said not to worry about increasing dosage as they are finding that slow is just as effective. We decided to increase since I had already frozen the remaining GcMAF in syringes at the .07mL dosage, since it had surpassed its' 2-months in the refrigerator. We could easily get 4 months or more of treatment by doing this so not as expensive as I originally thought. Just visited dr. who does ART testing and looks at blood work. She said he tested 'very healthy on the usual things that are checked every visit' (bacteria/parasites/lyme etc.). Which was great news! Had only happened once last summer. This was also good to hear since son had been thru a flu a few weeks ago with no problems (even had 102 fever which we had not seen in 3 yrs!). Still continuing on kidney tincture because of blood work and lympocytes are still high (been like that for 3 yrs.). Also, still ART testing positive for Claritin-12 hr. so continuing that along with 'Sage Memories' and neurofeedback. At this point, I am not sure if it is the GcMAF or the Valcyte, or both, are helping. We were at about the same place last year with Valcyte when son began feeling better too (lasted 6 wks.). He did have a rash on elbows that went away and then on feet that went away so we are suspecting some heavy dye-off. Son says he is feeling better and that his symptoms are 'PANS' related in his brain (light OCD, thinking) and some muscle aches and that is it! Now to make sure we do not have a repeat of last summer (i.e., boy-15 sick for 3 yrs needing to make up for lost time!--you have an idea. . Thyroid meds were reduced 25%. Did re-do the Nagalese testing to see where that is, but have not received results back just yet (takes about 6 weeks). I am also curious to get back blood work on the HHV-6 virus to see if that has gone down at all. Best wishes for continued healing. :-)

Oh, our favorite is the Detox deodarant from BioPure. Can be applied to bottom of feet and underarms. Both my son and I use it at night at bedtime.

Did you buy them from his office? If so, they may take them back and give you a refund.

Found this while deleting old messages. It still has some good ideas for detoxing. This is why I hate to get rid of old messages! Helpful Hints for Battling a Herx Food and Drink • water water water water water • kombucha: 3-5 cups per day • lemon water: lemon is a natural dexotifier • dandelion root tea: helps the gallbladder produce bile and encourages liver detox • peppermint tea: helps digestion and nausea • chlorella and spirulina: naturally detoxifying, binds to heavy metals • no caffeine: caffeine wigs out the spirochetes, so stay away • no sugar: sugar is inflammatory, which will irritate any symptoms you already have. The Borrelia bacteria also feed on sugar, so consuming it strengthens them. • easy to digest, alkaline foods: center your diet on vegetables, fruits, millet, fish, prepared simply. An alkaline environment is unfriendly to the Borrelia bacteria, and easy to digest foods will leave more of your body's chi to assist with detoxification • naturally antimicrobial foods: garlic, thyme, kohlrabi, turnips, rutabaga, dark leafy greens, turmeric Supplements • Milk thistle: helps support the liver and purge toxins, no contraindications I've ever read about • ALA: 600 milligrams per day during Herx • Alka-Seltzer Gold: place in 6-8 oz of water, consume a few times a day. It is suggested by my naturopath's colleague, it helps to alkalinize the body. I've never done this, but try it if you'd like. • Aleve: to help deal with pain, if you must take a painkiller, this is the one my naturopath recommends. I've never taken it, but try it if you'd like. Detoxification and Physical Support • Epsom salt baths: helps detox the body, relieve joint pain, and is a good natural source of magnesium. • Saunas: FAR infrared are best, but any will do. Spirochetes dislike hot temperatures, and sweating is an excellent natural detox • Peppermint oil: peppermint oil is a natural headache reducer and anti-nausea agent. Smell it, dilute it in a carrier oil/lotion and rub it on temples or use for self massage, put drops of it on a cool washcloth and use on forehead or back of neck • Warm water bottle or heat pack: use on the back of the neck for headaches, place on irritated joints, place on abdomen for stomach/digestive upset • Castor oil treatments: helps with liver detox • Do self massage and work pressure points

Sorry! Will try to empty a bit.

Tpotter: So good to hear your son is thru surgery and is on his way to healing. In reference to your ART dr: with our experiences with an ART dr. cannot go any other dr. now! I tried but ended up at my son's ART dr. because it just makes so much sense when the dr. can see what your body needs instead of all the guessing. Best wishes for your son's speedy recovery and your family. Take care.

Sending healing thoughts and wishing for the best outcome!