JuliaFaith

JF- remind me what Chlamydia pneumonia is again. My daughter's was 1:128 IgG - very high All I know is that it is another pneumonia (article below). After 18 months of treatment (iodine/garlic in nebulizer), that one is not showing up on energy testing anymore but the Mico. still is. http://www.healthychildren.org/English/health-issues/conditions/chest-lungs/pages/Chlamydia-pneumoniae-Infections.aspx Signs and Symptoms Illnesses caused by C pneumoniae can cause a prolonged cough, bronchitis, and pneumonia as well as a sore throat, laryngitis, ear infections, and sinusitis. They usually start gradually with a sore throat that is followed by a cough about a week or more later. The cough may last for 2 to 6 weeks. In some cases, the child may get bronchitis or a mild case of pneumonia. While some infected children have only mild to moderate symptoms or no symptoms at all, the infection may be more severe in others. How Is the Diagnosis Made? Many cases of C pneumoniae are diagnosed by a pediatrician after doing a physical examination of the child and looking at his symptoms. The doctor can also order blood tests that detect antibodies to the bacteria. However, it can take a week or more for the antibodies to show up in the blood. Although there are special laboratories that can evaluate swab specimens from the nose or throat, there are no reliable commercially available studies at this time. Treatment Recovery from a Chlamydia respiratory infection may be slow. Your pediatrician can prescribe antibiotics such as erythromycin or tetracycline to clear up the infection and help your child get better faster.

Just wanted to post that dh is not getting these shots right now. His inflammation level is really high already and these increase the inflammation in your body. Also, he had a thermography scan and heart calcium check and there are no indicators of pre-cancer or heart problems so doing other treatment for now. Doctor believes that by treating other issues, it could bring the nagalese (enzyme produced by cancer cells and viruses) levels back down without the GcMAF injections. So will keep fingers crossed.

We also got Alinia thru Canada (generic) for $95, since our insurance would only pay for 6 days worth. Did 2 weeks worth at the end of parasite protocol and then did 28 days 4 months later. Side effects were minimal (but he was on several natureopathic supplements which may have helped). Doctor said it treats several things at once so really a great abx. I heard recently that the company that makes it is not longer making more of the name brand. Not sure about the generic version.

Just found some of my old notes on CD57. Think we deleted article on laptop a while ago. Here are what my notes say: Low #'s may occur with: -XMRV & Borrelia -Chlamydia pneumonia (my ds had this) -Herz or die-off -TB We are doing a bunch of blood work next visit after 18 months of treatment. This will probably be one of the tests done since we have not checked this since the beginning of treatment. My son had a deep nasal swab done while he was getting tonsils removed and it came back positive for MaRCONS. Dr. was surprised because she said it usually takes several swabs to get a positive. We decided it was probably because they could go really deep while he was asleep. Used BEG spray to treat for 3 months. Hope that it is gone. Have not retested. Best healing wishes for your family!

Could not find any articles on my computer, thought there was one. But if it helps here are some comparisons for you: My ds was 25 and diagnosed with lyme/babesia/mico/MaRCONS etc. My dh who just got checked was '90' and the doctor said he is showing minimal signs of lyme. Not sure if she is going to treat or not.

Is you son on any thyroid medication? My son's TSH was 10.34 and now, several months later with thyroid treatment, it is at 3.86. His doctor wants to see it below '1' before taking him off the meds. He was diagnosed with hypothyroidism but dr. says it can switch quickly to hyperthyroidism. Not sure why. Also, just read that lyme attacks the thyroid first, because the thyroid works at fighting off the lyme. So the lyme knows that and attacks the thyroid first. Interesting huh?

MT!!! you did really good at regular speak! Thank you now..how is it human derived? that is a bit concerning to me. is it from blood? is it like ivig wher it comes from a variety of people or is it from one person they have screened? i tried to look it up. Thanks, you are a great source of info as usual. You can find answers to a lot of your questions on their website www.GCMAF.eu

Not sure if she would drink this, but MILA (LifeMax brand) has tested well for my son/dh for all kinds of things, including vitamins, Omega's, cholestrol, constipation etc. This brand is one of many tested that has tested out well with muscle testing (sending another one for them to try tomorrow). Put a Tbl. in water/juice for hour and drink. If you leave longer than that it gets like jello and my son will not drink it. Now that he is willing to drink it we may be able to take him off some of his other supplements (per dr.). It is $60/bag but lasts quite a while. Considered a 'super ancient food' with all kinds of benefits. It is my opinion, whatever that is worth, that PANDAS kids have many issues and finding a MD/ND who is well versed in lyme, as well as, or in addition to, just treating the whole body had been a great choice for us. Our dr. uses all types of prescription/supplements/homeopathic all at the same time for treatment and body support which helps ease the suffering vs. just going a few directions. It is expensive though. The auto-immune issue opens the bodies up completely to so many other things (i.e., lyme, mico, viruses, bacteria etc.) that it seems to require a community, if you will, of doctors, prescriptions, supplements, etc. to treat so that minimal side affects are allowed to happen. Our dr. told us at the first visit that if we did not do 'everything' that she recommends it will be like a table with a missing leg. We have done this and 'flare-ups' have happened along the way but they were much less than before and have been reduced over time (17 months) to a day here and there. Your situation breaks my heart so I hope you find your way for what will work well for your dd - you can find it, but you may have to keep looking for the right doctor for treatment. Best healing wishes to your family! P.S. Just thought of a guy who is on federal assistance and going to our doctor's office, he just goes a bit slower on treatment because he cannot afford it all at once and is doing much better and continuing to improve.

My son started the K-MAF about 2 months ago for viral treatment (his main issue right now) along with Valcyte (prescription anti-viral). Started him on it 3xday and when he saw dr. she tested it and it tested just 'ok' not great so reduced it to 1xday (just tested again yesterday and he is still on same dosage). She figured the Valcyte was doing enough work so that the K-MAF did not need to do much. My son has not had nagalese tested yet, but it will be part of testing in another month. My dh tested high on nagalese (2.6) along with high TGF-beta 1 (40,000). Dr. said he was in the top 10 of 100 patients they have tested for nagalese number and two of those 10 have cancer! So, he is probably going to start on the GcMAF injections soon. There are a few recommended tests before you start the injections - Vitamin D is one of them. MICHAEL - Dr. recommended that he reduce nagalese to <.95 but BetterHealthGuy is trying to get his down to <.60. Will be interesting to hear your number and amount of time you did the treatments. Wishing the best for your test results.

Hello S&S: So sorry to hear about your daughter and hope you find some answers quickly! When you mentioned the yeast, it reminded me of a statement made in the methylation article posted recently: "Heavy metals play a big role in NeuroImmune syndromes. There is a synergy between Candida, yeast, virus and heavy metals. People may address Candida only to find that it comes back repeatedly which may be an indicator of an underlying heavy metal issue." http://www.betterhealthguy.com/joomla/blog/265-methylation My son is on his 2nd treatment for yeast, and is also taking Valcyte for viruses, and suppositories for heavy metals, all at the same time. For my son, viruses have been the most difficult to treat. With mostly natureopathic/homeopathic (along with a month of Alinia) he was able to get thru the lyme/babesia stuff pretty well. Of course, his thyroid and other health issues were being treated at the same time, as well as, support for organs/anxiety etc. Did'nt you just start seeing a new doctor? How is that working out? Just keep thinking if you get a really good dr. they can get your daughter on a good combination of things that all work together to heal her and help with all the rest (detox, rages, organs etc.) while the healing is going on. Before our current dr., I took my son to an acupuncturist who practiced Chinese medicine, and she knew way more than all the other doctors put together (including specialists). So hope your finding someone good to work with daughter. Hope you can find some time to yourself to re-boot - this treatment stuff can really take its' toll, especially when you are treating and taking care of 3 children and you are not feeling well too! You are amazing just being able to deal with all of that! Having 'faith' is the first tier of healing (according to this one doctor I spoke with several times) and I believe it is true, but has been difficult at times. Just spoke with my friend fighting breast cancer and reflected that F.E.A.R. means that (f)orgot that (e)verything will be (a)l®ight. Best wishes for you and your family! Sending healing thoughts your way!

This web site looks like it advocates bleach for mold removal, something I know does not work. You know I read that too. An article that I read stated that vinegar was the best thing to wash mold with because it kills it.

Here are a few websites that I found that look at ozone treatment for mold: www.advancedmoldinspectors.com/ozone.htm http://www.health.state.mn.us/divs/eh/indoorair/mold/index.html

Hi Julia, could I PM you for the name of this machine? www.beehealthyfarms.com- propolis Vaporizer with fan.

Good question! One we have asked ourselves as well. We had our vents 'professionally cleaned' but when I asked about mold the guy said he could spray a fungicide in the ducts but it would be poisonous! So elected not to do that and try to change our electronic filter once a month. Not sure if this is working well or not but may know soon as we are going to do another ERMI test in a week or two. I believe, Familyof5, turned her heating system off and just used space heaters. Did come across some infrared space heaters that are sold at the local home improvement store which was interesting along these lines. We went in a sauna with these at a garden show and it was wonderful!

So glad you were able to get out and have some fun! We are going to go to a local science center and meet one of my ds xbox friends for the first time this coming week. We are hoping he will be well enough to go and not sure how he will feel the next day - but do not want to stay in a 'bubble' and have to capture that fun whenever possible! Sounds like you found a few more things to work on, health-wise. My ds just got a yeast infection again and his dr. said it was from excess die-off. So, being treated with Sporanox for 6-12 weeks. Keep healing and posting! Best wishes.

This sounds similar to the 'propolis' that we use with a diffuser. Propolis is from honey bees - they line their nests with it to keep out bacteria/mold. We have this running all the time in the family room and just purchase little capsules of propolis to use in the machine. With this and an air cleaner in son's bedroom we pretty much have covered the main areas he spends time in during the day/night.

PM'd you. Glad you clarified the 'state.' lol

Thanks so much for this info. My Dh will appreciate reading it as well. I believe, he said the starting dosage would be 0.08ml once per week. But, my dh also has a high TGF Beta-1 (40,000!) so I wonder if this is why the dosage is lower to start with. Very good to know that maybe dh can switch possibly to the homeopathic K-maf at some point because not sure how we are going to pay for extended months of treatment. Thank you so much for the well wishes!

Same as Michael, it was no problem for me either shipping from the EU to the US. Yes, it was made by BioPure.

The GcMAF treatment was originally recommended for my son because he could not get rid of a virus. Usually, the nagalese level is tested before treatment. Instead, we chose for him to take a prescription 'Valcyte' which stops viruses from reproducing and hopefully his immune system, at some point, will start getting rid of them on his own. We also added in a homeopathic K-MAF (like GcMAF) from the EU to maybe train his system to deal with viruses. This is another version of the GcMAF (maybe not as strong?). Now, my Dh was tested for 'Nagalese' and he has one of the top ten numbers (2.6) in the office. Normal is .4-.65. Dr. said of the top 10 two have cancer. So now she is recommending the GcMAF treatment for my husband (`$900/2 months). His TGF beta-1 # was also the highest they had ever seen (inflammatory marker). So here we go on another health adventure. Here is the website on the product GcMAF: http://www.gcmaf.eu Apparently, this treatment trains the immune system and once the test numbers are down to normal they will continue that way possibly for the rest of your life, thereby, facilitating your immune system to work properly. This is especially interesting for the PANDAS/PANS people on this website. Although, there are others using the treatment for lyme as well. Others have mentioned this GcMAF treatment on here and BetterHealthGuy is still blogging about his experience. Just keep wondering if: 1) I am next; 2) if all of this started with mold and genetics?; 3) we can financially accomplish all this treatment and dh can continue working! (BTW - I feel pretty good myself - knock on wood!)

My dh made the mistake, at first, just tearing mold out and removing it without taking air quality precautions. This was a bad mistake. Make sure you do removal correctly (i.e., plastic off entire area, fan going to outside, full air mask on, etc.). I believe Amazon had a book on it. The bottom line is that 'indoor mold' is not healthy for anyone, much less someone with a chronic illness.

Ds was supposed to drink it 2-4 times a day. He really only drank it twice a day like Michael. We purchased it from dr. dispensary (same brand as Michael's) for $35 for a good size bag. It lasted several months. Son was drinking it for the first 14 months of treatment and just tested that he no longer needs to drink it. If dh has to start drinking it, I may see if a plant can be purchased and planted in the yard. It has beautiful purple flowers (cistus incantus-I believe is scientific name).

No, no genetic testing yet, just switched LLMD's as mine was not experienced and didn't explain anything to me! Is HLA genetic testing the one where you do the test for foods, antibiotics, additives, etc? I think I have a test order for this, haven't filled it yet. Son's dr. had "HLA DR by PCR+MSH+VIP" testing done thru LabCorp (twice so far). This is in alignment with some of the tests recommended in 'Surviving Mold.'

Your kit has 36 species which is the same as ours so it could be the same one (although yours says '5 day' so not sure what the difference between 5-day and 1-day is - maybe quicker turnaround?). On our test the chemist pointed out an Aspergillus # that he said to be concerned about. After researching it found out it is the most toxic and can cause damage to vital organs & cancer! Had no idea that mold could cause these things! Mycometrics is the lab that Dr. S recommends in his book, but that was written 2 years ago. Keep us posted on the results. Interesting: A study was done on mold growth with and without EMF's and the one with the EMF's grew much faster than the one without (cell towers/cordless phones etc.). Why no stachybotrys? This one showed "ND" on our test which I believe means 'not enough to measure'. All of this is overwhelming, I agree, felt the same way when we looked into it. But now with my Dh test's high (TGF beta-1) too we are glad that we know about it and are hoping that it is remedied. We figure we may be healthy in our old age now but broke! Have you done the HLA genetic testing yet? When I cleaned home top-to-bottom I got rid of everything that I could but kept things that could be washed and/or dried for 30 min. or more. Furniture was vacuumed although when I replace it will get leather instead. So it really depends on your susceptability to mold illness.

All I can tell you is what our dr. recommended. It really depends on what you have going on at the time, because, for instance, the gut is a huge part of beginning to heal so if that area is not in too good of shape that would be one of the starting points (along with other things). It does seem like this office likes to start with reducing parasite/worm load. Month #1, this is what ds started on before any tests had been done yet: Treating GI Inflammation (still working on this with probiotics) Lung healing (mico.-still doing treatment 16 mos. later) Bio-film treatment (rock rose tea -lyme) Nutrient support Month #2 (test results back): Start Thyroid meds. Added in more lung support Detox Antimicrobial treatments (anti-fungal/Anti-viral) Parasite/worm protocol (Biltricide/Ivermectin/Pyrantl/Albenza/Alinia [this one covered lyme and others things too]) Month #3: Continuing with prior month meds/supplements Added: Vit. A Kidney support New anti-microbials toxin binding - clay This is just the beginning of our 'lyme' journey. Now after 16 months of treatment dr. says 'big bugs' are taken care of now we are concentrating on small ones (viruses). Hope this helps.