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Michael/Julia

I've read just a little about the GcMAF shots being used to boost the immune system but am wondering what their effect on autoimmunity might be. Do either of you have the additional information on how it would work for a PANDAS patient?

 

*Dr. Jeffrey Bradstreet (a well known DAN! Dr., not a LLMD, so I can post his name)

has been working extensively with the GcMAF (got the spelling right, finally)

shots with children on the spectrum, and writes a blog about it.

If you google Dr. Bradstreet blog, it is publicly available to read.

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Julia, sorry to sidetrack- you said you supplemented glutamine- dd and I both tested for a heavy need of it- I bought some, gave her one, she had a horrible flair/reaction-horrible.

made me think of all the glutamate threads we have seen and how too much glutamate is an issue, and seeing improvement with glutamate blockers.

I'm confused why we are showing a 'need' for it, and will never supp glutamine ever again.

 

I am/have been on bio-med boards for children on the spectrum-

some do viral protocols with naturals, using up to 3 different things at once

(OLE, virastop, Eldaberry, Enhansa curcumin, etc.)

to try and 'pull them out.'

Some will do the Valtrex or Famvir type prescription, but state it is necessary to use full dose- if not, it will allow the viruses to grow stronger, need full dosing to adequately surpress,

and watch out for yeast. And that addressing the virals like this can also pull metals.

 

I have also read threads of some parents using the GMF (sp.?) shots-

as the immune system wakes up, it can start killing off, some flairs.

Some are having mixed results-

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.

 

As you all know I am an ART advanced practitioner. There is level-3 so far, no level four. I know Dr K is planning it but no training/certification for the same so far.

I do use Pleo Sanum remedies. As always ART is used to finalize the remedies.

Pleomorphic therapy considers Viruses to be very opportunistic infections mostly due to internal milieu disturbances. So nutritional and organ support using ART for prioritizing is very important to see pood results. Pleo-Sanum uses protocols and is done chronologically. Its not a single remedy fix all approach.

 

Metals and viruses are not directly related in my experience so far. Metal detox is a good idea in general when treating TBIs.

 

GCMAF- Better health guy (S.F.) is a friend. He has tried GcMaf under the guidance of Dietrich K and Bradstreet. After being 90% better he had a heavy return of inflammation after starting with a low dose of gcmaf. he is not really seeing any clinical improvements. I have heard the same from several other adult patients. So just reducing Nagalase (which is known be a toxic byproduct of viral infections and cancer cellular metabolism blocking Vit D3 receptors etc) is not always leading to a clinical improvement.

 

DS's test results for DNA, RNA nuclear oxidative damage, urine porphyrins just came back from Laboratoire Phillippe in France and Nagalase too.

Ds's nagalase is 1.0 (ref range 0.35 to 0.95), vit D is 36, he has average oxidative damage in his cells and his cellular immunity is accurately activated.ANd there is NO, repeat NO bloodbrainbarrier (BBB) inflammatory response as per immuno staining test! YAY! PANDAS has finally taken a bow out and I hope to keep it that way. This is really measuring the actual brain endothetial cells response not just a clinical lack of PANDAS symptoms. I can't expect to erase B cell memory so soon but hopefully that will happen too.

 

There is no real test to measure that. BIONIC 880 is a great tool for immune modulation and I hope to achieve the B and T cell responses I need. I use/ create individual patient AUTONOSODES in my clinic along with the regular Lyme BB and Co nosodes.

DS's white cell count is the HIGHEST since 2009!

 

He rides over a cold or any other virus normally

he is now mounting a fever after 6 years of not being able to,

Recent Mycoplasma infection went to high IgM response, going down now and IgG beginning to rise- NORMAL immune response after all these years! The same infection in 2008 went directly to IgG, poor kid and we never addressed it until Dr T, the brilliant Dr T figured it out.

Raw goat's milk has helped to eliminate the need for enzymes and betaine HCL as supplements.

 

Dr Klinghardt has come up with a Homeopathic GcMaf only available in Europe so far.

The GcMaf probiotic Yogurt is available in the USA now Scott tells me.

 

Do keep in mind that betterhealthguy has been thru phenomenal therapy including regenerative cryotherapy for T&A , Stem cells, Bionic 880 Biophoton therapy. These are all very potent treatments.

My experience

DS , DH and I just had the T&A using regenerative cryotherapy in November. We all experienced a very dramatic shift in our healing pattern. We are now responding faster to treatment and the herxing is 2 to 4 days if any with any change.

 

We started the Bionic 880 biophoton therapy early January. The results have been extraordinary- each day seems brighter, depression is gone, energy is great, higher titers for Bartonella in bloodwork, Lyme is finally clearly exposed, higher RMSF titers, NO immune complexes, NO viruses anymore- I believe we are now seeing a true picture- for Ds. havent been able to bloodtest DH and I yet.

Microorganisms are fully exposed for Ds after biophoton light therapy. DS sees Dr Jones and Dr Klinghardt in addition to me. I am trying VERY hard to have my website up and running so I can write about DS's journey. DH is the web architect but as been thru treatment finally after months of denial. So Im not pushing too much.

 

I now offer Bionic 880 light therapy in my clinic. Travel to Germany to see a trained practitioner is no longer required. I finalized a pediatric protocol for the Bionic 880 in December along with other support therapies like Biofeedback, Cold laser detox etc. I am seeing fantastic results in my family and my patients. A sense of well being is great to have back after all these years feeling icky.

Hopefully will present at the next ILADs if I can get my act together and write the darn paper!LOL.

Also hope to train for Regenerative Cryosurgery in the next year or so. This is a fantastic alternative to regular T&A but only offered in Germany. I have been already approved for the training and would love to bring it to the States and my patients but need to have Ds fully settled before such a venture.

 

My nagalase came back too and it is 1.30

 

GCmaf update- have it waiting and ready in my freezer, have a very gentle pediatric protocol too for DS BUT need to wait till Vit D3 is atleast 40. So we're waiting.

 

Having dinner with betterhealthguy, Dr J and Dr Bradstreet next month, seeing Dietrich K in April so will keep you guys updated with what I learn as always.

 

The sequel to under our skin maybe previewed at the Spring ILADS gala in NYC is what I hear from the producer. For those attending you see yours truly featured. The movie is still in the editing stage but the preview is ready.DS is being interveiwed next week and he will talk about his experiences with LYme, PANDAS, his docs etc. Will be helpful for children. They are covering pediatric lyme, gestational lyme, integrative/Holistic medicine practitioners and the latest treatments in the sequel.

 

These have been my experience so far.

Edited by sptcmom
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Also hope to train for Regenerative Cryosurgery in the next year or so. This is a fantastic alternative to regular T&A but only offered in Germany. I have been already approved for the training and would love to bring it to the States and my patients but need to have Ds fully settled before such a venture.

 

GCmaf update- have it waiting and ready in my freezer, have a very gentle pediatric protocol too for DS BUT need to wait till Vit D3 is atleast 40. So we're waiting.

 

(partial quote from above)

 

Do you know if there is a test--blood test or energy test or any kind of test--to indicate whether the regen cryosurgery would be helpful? Is there something specific that is looked for symptomwise to indicate it would be helpful, or a particular result looked for or reason to do it? I've heard it can be very useful but don't know much on the why and how we know kind of stuff.

 

The GcMAF really gobbles up the vitamin D, mine went from 132 down to 40-something in a period of a little over a month of this therapy plus a couple weeks without it.

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Michael/Julia

I've read just a little about the GcMAF shots being used to boost the immune system but am wondering what their effect on autoimmunity might be. Do either of you have the additional information on how it would work for a PANDAS patient?

 

I can't imagine it would have any DIRECT impact on autoimmunity. Macrophages are a part (or the part?) of the immune system that gobbles up kills and destroys the buggies such as viruses and bacterias. But they need to bind with vitamin D to do the job. What GcMAF is, is the protein that binds the macrophages with the vitamin D. Without this protein, the macrophages won't do their job. There is some belief it is viruses or retroviruses the create nagalase which is the enzyme that tells the person to stop making the GcMAF by itself, so taking GcMAF can help kill these viruses/retroviruses along with other things, which could allow nagalase levels to return to normal lower levels and then allow person to make the GcMAF by themself. That is the theory anyway, but that is what the GcMAF is. So, looking at what it is, that is how I say I can't see it directly impacting autoimmunity. Perhaps it would have the same affect on PANDAS that abx or IVIG might, at least generally, in that it will help reduce the load of buggies that could be what the autoimmunity is directing itself at. All these things are complicated, so perhaps there is a chain of events that would also address autoimmunity itself, I wouldn't know about that.

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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.

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Julia - I had heard the GcMAF is human derived, did not know if it was from blood or otherwise. You've heard it's from blood? I am using it, it has helped a lot. My source is 660 euros (about $900) for 800ng which they are saying is an 8 week supply, I am using it a bit faster but surprised to hear your source saying $900 for a month. Wondering if it's a different more expensive source, or perhaps larger doses.

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.

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Also hope to train for Regenerative Cryosurgery in the next year or so. This is a fantastic alternative to regular T&A but only offered in Germany. I have been already approved for the training and would love to bring it to the States and my patients but need to have Ds fully settled before such a venture.

 

GCmaf update- have it waiting and ready in my freezer, have a very gentle pediatric protocol too for DS BUT need to wait till Vit D3 is atleast 40. So we're waiting.

 

(partial quote from above)

 

Do you know if there is a test--blood test or energy test or any kind of test--to indicate whether the regen cryosurgery would be helpful? Is there something specific that is looked for symptomwise to indicate it would be helpful, or a particular result looked for or reason to do it? I've heard it can be very useful but don't know much on the why and how we know kind of stuff.

 

The GcMAF really gobbles up the vitamin D, mine went from 132 down to 40-something in a period of a little over a month of this therapy plus a couple weeks without it.

 

Michael

Dietrich and I both tested DS for regen Cryo indirectly with ARt. Upon both two pointing and prioritizing, the focus was the tonsils for Ds. Dietrich suggested t&A or cryo is best if I was up for it, my choice. I researched and chose Cryo. I also spoke with other Dietrich's patients and got some more info.

A phone consult with the doc in Germany taught us that the mom needs to be examined and treated and dad too to be totally covered. DS got the t&A done, DH and I got T&A and sinus cryosurgery too. Sinuses are contraindicated for kids.

I wanted to preserve the MALT immunity for DS. Since PANDAS is a huge issue for him and has had Vitiligo in the past and autoimmune in family history, I felt getting rid of any immune tissue cannot be good. So decided to preserve and clean out the tonsils instead.

 

DS was TOTALLY asymptomatic for 38 days post cryo until he contracted Myco P. in school.I am still feeling fantastic and DH is totally off abx and on only herbals. I am using Bionic for Ds and myself and hope to be off abx soon too. As an added bonus DH's trumpet like snoring is a thing of the past! whew!

 

The entire viral load disappeared for all 3 of us. DS's ASO went back to normal and Dnase too.

Edited by sptcmom
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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.

 

Not sure who this is meant for but wanted to chime in

your son's symptoms are typical of Bart. Artimisin is more for bab and inflammation. Antiviral is a minor effect.

Viressence is pretty good for viruses. garlic too. Quintessence is for Bart mostly.

All of the above need to be liposomal to be max effective.

Artimisin needs grapefruit juice to be better absorbed.

Grapefruit juice is to be done two hours away from Mepron.

GcMAF is not the only option. seems to be the fastest option in theory. As I said there are alternatives coming soon.

I havent found any pediatric GcMaf convincing success stories other than for kids with Autism. its a different issue there.

 

Intestinal parasites and biofilm will shield viruses and smaller bacteria so yes if one ART tests for parasites it could mean viral load. yeast can bind to heavy metals so both often test together with ART.

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Julia - I had heard the GcMAF is human derived, did not know if it was from blood or otherwise. You've heard it's from blood? I am using it, it has helped a lot. My source is 660 euros (about $900) for 800ng which they are saying is an 8 week supply, I am using it a bit faster but surprised to hear your source saying $900 for a month. Wondering if it's a different more expensive source, or perhaps larger doses.

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.

 

Sort of not sure if I'm using the GcMAF or not, as I test everyday now with no real pattern anymore. Started out weekly injections, increasing amount, then twice a week, then every other day and quick stop for a week or so. Back recently twice a week and then 3 days in a row ending yesterday, violent "no" this morning. Wondering if this is in response to treating something that has cycles, and the pendulum is timing things with when bugs are vulnerable, or other ups and downs. In the beginning I had fatigue rest of day following injection, no more of that response, and generally fatigue has improved, I do believe this is the reason, not doing too much else significant lately. So, think it has helped, not sure if it is short-term or making real lasting progress with things, we will see.

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Also hope to train for Regenerative Cryosurgery in the next year or so. This is a fantastic alternative to regular T&A but only offered in Germany. I have been already approved for the training and would love to bring it to the States and my patients but need to have Ds fully settled before such a venture.

 

GCmaf update- have it waiting and ready in my freezer, have a very gentle pediatric protocol too for DS BUT need to wait till Vit D3 is atleast 40. So we're waiting.

 

(partial quote from above)

 

Do you know if there is a test--blood test or energy test or any kind of test--to indicate whether the regen cryosurgery would be helpful? Is there something specific that is looked for symptomwise to indicate it would be helpful, or a particular result looked for or reason to do it? I've heard it can be very useful but don't know much on the why and how we know kind of stuff.

 

The GcMAF really gobbles up the vitamin D, mine went from 132 down to 40-something in a period of a little over a month of this therapy plus a couple weeks without it.

 

Michael

Dietrich and I both tested DS for regen Cryo indirectly with ARt. Upon both two pointing and prioritizing, the focus was the tonsils for Ds. Dietrich suggested t&A or cryo is best if I was up for it, my choice. I researched and chose Cryo. I also spoke with other Dietrich's patients and got some more info.

A phone consult with the doc in Germany taught us that the mom needs to be examined and treated and dad too to be totally covered. DS got the t&A done, DH and I got T&A and sinus cryosurgery too. Sinuses are contraindicated for kids.

I wanted to preserve the MALT immunity for DS. Since PANDAS is a huge issue for him and has had Vitiligo in the past and autoimmune in family history, I felt getting rid of any immune tissue cannot be good. So decided to preserve and clean out the tonsils instead.

 

DS was TOTALLY asymptomatic for 38 days post cryo until he contracted Myco P. in school.I am still feeling fantastic and DH is totally off abx and on only herbals. I am using Bionic for Ds and myself and hope to be off abx soon too. As an added bonus DH's trumpet like snoring is a thing of the past! whew!

 

The entire viral load disappeared for all 3 of us. DS's ASO went back to normal and Dnase too.

 

 

Good to know there is some testing for it, and happy to see how much it has helped you all.

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Great posts - very informative. Thank you all.

 

sptcmom - Can you tell us a bit more about the Biotic 880 Biophoton therapy?

 

 

Julia here is an informative thread from Lymenet that will answer all your questions on Bionic I think

 

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/108232?#000000

 

There is a US version called as PE1 and upon research, talking to people using it, professionals too,I wasnt very impressed with that other than it being cheaper. German Technology is original, and far more advanced than PE1. Ive been to Germany for training and treatment and have a first hand knowledge of how things are done, the research thats gone into the Bionic prototype and the current version. I couldnt settle for the cheaper version for my family or patients.

 

happy to answer any other questions you may have.

I know many well known patients and lesser known who have successfully transitioned off abx after treatment with the Bionic. My goal is to do the same for children and my own son.I am seeing a lot of abx resistance building in children who've been on abx for 2 or more years and The Bionic is def going to make a difference.

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