GcMAF Update to share

[JuliaFaith]

For those of you interested in the gcmaf, here is a copy of the letter I sent to www.gcmaf.eu for an update on my son's treatment. It is a requirement for treatment which adds to their studies. It is my belief that the healing will continue even when we are done with the treatment as it is supposed to last your lifetime [not sure if that is true for all diagnosis]:

My son (15 yrs.) started on gcmaf over 6 months ago now. He had already been through 3 years of treatment prior to starting gcmaf and is still taking some supplements (detox, fish oil, thyroid meds, desmopressin, recently minocycine as well).

My first goal for trying gcmaf was to reduce high viral numbers (that had not gone down over 3 yrs. of prescriptions/supplements/homeopathic tinctures). Valcyte was the last prescription tried in which he had 6 weeks of 'feeling better' for the first time in 3 years and then went back to 'before' baseline (flu-like sypmtoms). This was two summers ago.

My second goal for gcmaf was to train his immune system to work better (i.e., PANS). He has been treated for several things which indicate that his immune system was not working well. He felt ill just being around others that were ill.

His nagalese was 1.3 at the beginning of gcmaf treatment-it is now .87. He will be finishing his second vial and then stopping in a few months. He has been on .05 mL 2xweek for the entire treatment.

His CD57 was 48 at the beginning of gcmaf-it is now 70. Took 3 yrs. with treatment for it to go from 24-48 before gcmaf.

His viral numbers have been mixed. EBV and HHV-6 have been the two that have been testing HIGH for 3 years. His last blood work showed the following:

EBV 4.0---Past: 3.6; 3.0 so not very impressed with this yet.

HHV-6 2.89--Past: 4.34; 3.64 so this has shown improvement.

Lymphs 45--Past: only one was below this at 41.1 (over a year ago), but the rest have all been 46-55. Not sure if this is significant but will take it.

Not seeing much with the immune system yet. He is in the middle of a cough which has always triggered his PANS which it has this time as well (per ART muscle testing and some symptoms).

Before this cough, he has felt better lately, than in the last three years (except for end of Valcyte two summers ago for 6 weeks). It has lasted over 3 months now. For the first time since my son got sick and never got better, he is referring to 'when he was sick' in the past tense, starting to exercise, and play soccer again.

We are hoping for continued healing.

[sf_mom]

I've been waiting for your update. Nice to see its helping!!!! I am impressed with the improvement in his CD57 and his wanting to exercise and play soccer.

 

My friends son is in the throws of GcMAF shots now (approximately 8 weeks) and it was a rough start as his immune system activated. His numbers were elevated at 1.2 and he is IgG and IgA deficient. They choose to treat Nagalase in advance of IVIG to see if his deficiencies in his IgG/IgA would improve. His CD57 has always been in the 20's. He is slowly feeling better and she will have a better sense on how helpful the shots are at six month mark as well.

 

We tested our entire families Nagalase with only two results back so far. My results were surprisingly normal at .64 Our Dr. had never seen anyone with Chronic Lyme that had normal Nagalase. However, that result goes hand in hand with how I am feeling which is very close to symptomless. My recovery really turned the corner 8 weeks after starting Ozone therapy. Ozone is suppose to be fantastic for obliterating viruses. In two weeks time, I will have my viral and mycoplasma results back and will know for sure if ozone truly helped.

 

Our older son's Nagalase is elevated at 1.3. He is also IgG and IgA deficient. He currently maintains a high level of recovery, still on antibiotics and has moments of just not feeling well along headaches which might be related to chelation. No notable PANS symptoms. We are pursuing the idea of GcMAF for him but are waiting to see if he too can be helped by ozone treatments. I should know more by spring.

 

For your DS cough, a nebulizer along with hydro peroxide mixed with distilled water would help with cough.

Edited November 20, 2013 by SF Mom

[rowingmom]

Thanks JuliaFaith and SFMom for keeping us up to date with the alternative therapies.

[JuliaFaith]

SF Mom--

Thank you for the nebulizer idea! Will try it! Will be really interested to hear how the ozone helped with your viral and mico. numbers look.

 

My son's nagalese was 1.3 at the beginning of the gcmaf as well. Doctor was really impressed with how quickly his went down considering his low dosage. She attributed it to all the work done before hand. She also said that viral numbers may always be there, they just want to make sure they are not too high. I need to clarify what 'high' means in her mind because she seems to have different ideas about blood work results than the labs.

 

Curious about the ozone treatments. What exactly are they? My husband had some ozone injected into his sinuses for long-time issues and it helped a lot even though it was not his favorite treatment. It was done to replace abx as they did not really work for him any more. They also used procaine in some areas. The injections are amazingly effective.

 

Sugar water injections were used on the top of my shoulders because they were bothering me, but they only used sugar water. After 2 treatments, if I get shoulder pain it is under the areas where those injections were done not in the injection areas. May have to have more done in the future. Apparently, a doctor in maybe New Zealand discovered using sugar water and its' effectiveness. Not sure how that happened. :-0

 

Son has never been interested in the injection side of things and only agreed to have the 'head of thorns' when he had a concussion. There have been times when the doctor would have loved to do more injections on him.

 

Take care.

Edited November 20, 2013 by JuliaFaith

[sf_mom]

I first used ozonated olive oil topically for scraps, bruises, rashes, eczema, mouth sores, etc. which was extremely helpful.

 

Then I had a sinus infection that was ongoing for over a year and antibiotics were not helping. It took two ozone injections to clear things up. Worked phenomenally but it also turns out many sinus issues are truly yeast/fungus and maybe why antibiotics didn't help me. After such great results, checking with our LLMD, I decided to look into ozone further and found an NP in Northern CA that does all different kinds of ozone treatments. Initially, he had me breath ozone that was bubbled through olive oil. I have since added ear and rectal insufflation treatments. I do ozone once a week followed by hd IV C a couple days later... my fatigue just melted away in July and has not returned. I am fairly close to symptomless now. It turns out the ozone will help eliminate metals as well which was an issue for me. I could just smell the metals dumping after each treatment.

 

So, right now I am in the process of re-checking heavy metals, viruses, mycoplasma, thyroid and hormones. Inflammation markers are normal and so is my Nagalase. If every thing looks good I will stop the last antibiotic I am on in the next couple of month. I should have most of my results soon. Truly the turning point in my recovery. We are having similar success with my son who had a chronic cough off and on for years... some would call it a TIC but it rapidly went away when ozone was introduced. Perhaps the ozone was getting to areas the antibiotics couldn't reach or the cough was from yeast who knows but it is gone.

 

I highly recommend ozone with an "experienced practitioner". You can herx intensely if you over oxidize the blood cells...... so, slow and steady wins the race. You really need to build up on the type of treatments and dosage. I know they use ozone for joint issues often referred to as 'Limb Bagging' but never discussed that particular therapy with our NP. There are other more intense ozone therapies but I have had such great success with insufflation there is no need to move beyond what I am currently doing. Hydrogen Peroxide is a similar process. Here is good link that explains the oxidation process.

 

http://educate-yourself.org/cancer/benefitsofhydrogenperozide17jul03.shtml

Edited November 20, 2013 by SF Mom