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Made a decision on viral treatment


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Saw the doctor yesterday after deliberating over our next step in treating the viruses. Basically, after trying Valtrex/natureopathic/homeopathic meds. with no improvement (for at least 9 months or more), decided to try a bit of both of our choices.

 

Doctor and I both had the idea to ART test both the Valcyte and GcMAF. Both tested very high. So right back to the beginning of all the deliberation. :wacko:

 

Decided to try Valcyte (ds14 is at least 140 lbs.): dr. said treatment could be 6-9 months; she said that fatigue is mostly what her patients say about side effects; says the patients feel fatigued for that 6 months (or whatever time frame) and when she takes them off of it, they feel great. The short time-frame on it was another factor in going this direction, along with the cost of it mostly being covered by insurance (still on many other supplements etc.).

 

Also decided to do the K-MAF (another version of GcMAF) homeopathic from the EU (www.biopure.eu/USA). So basically, doing both treatments, although the homeopathic version may be a bit different than the injection version (not sure how?). The cost is 36 euros for this compared to the injections which would have been ~$900/2 months. Dr. also asked that we order the following from the same place:

 

K-OXY (oxygen?)

K-METHYL (methylation?)

K-ADH (like vasopressin which son is also being treated with?)

 

Also, adding 'Matrix Minerals' for the anti-viral treatment. Forgot to pick this up, but curious how different it is from the CORE; and Thorne K2 for decreasing inflammation in the brain which we did at the beginning of all of this treatment as well.

 

Son is dropping the Valtrex, Artemesinin (thank goodness), and rock rose tea (for biofilms) per ART testing and continuing improvement and/or done in most other areas - good news!

 

Also, asked how he is testing for MOLD which has been an issue. Looks good for Mold! but still testing for heavy detox. Dr. said it could take 2-3 years of detoxing after being around mold. Of course, HLA testing showed a decreased ability for detoxing so it all correlates well. We will be doing the ERMI again soon just to make sure our house is healthy.

 

Hope some of this helps for those of you debating some of the same issues. Best wishes on continued healing!

Edited by JuliaFaith
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Saw the doctor yesterday after deliberating over our next step in treating the viruses. Basically, after trying Valtrex/natureopathic/homeopathic meds. with no improvement (for at least 9 months or more), decided to try a bit of both of our choices.

 

Doctor and I both had the idea to ART test both the Valcyte and GcMAF. Both tested very high. So right back to the beginning of all the deliberation. :wacko:

 

Decided to try Valcyte (ds14 is at least 140 lbs.): dr. said treatment could be 6-9 months; she said that fatigue is mostly what her patients say about side effects; says the patients feel fatigued for that 6 months (or whatever time frame) and when she takes them off of it, they feel great. The short time-frame on it was another factor in going this direction, along with the cost of it mostly being covered by insurance (still on many other supplements etc.).

 

Also decided to do the K-MAF (another version of GcMAF) homeopathic from the EU (www.biopure.eu/USA). So basically, doing both treatments, although the homeopathic version may be a bit different than the injection version (not sure how?). The cost is 36 euros for this compared to the injections which would have been ~$900/2 months. Dr. also asked that we order the following from the same place:

 

K-OXY (oxygen?)

K-METHYL (methylation?)

K-ADH (like vasopressin which son is also being treated with?)

 

Also, adding 'Matix Minerals' for the anti-viral treatment. Forgot to pick this up, but curious how different it is from the CORE; and Thorne K2 for decreasing inflammation in the brain which we did at the beginning of all of this treatment as well.

 

Son is dropping the Valtrex, Artemesinin (thank goodness), and rock rose tea (for biofilms) per ART testing and continuing improvement and/or done in most other areas - good news!

 

Also, asked how he is testing for MOLD which has been an issue. Looks good for Mold! but still testing for heavy detox. Dr. said it could take 2-3 years of detoxing after being around mold. Of course, HLA testing showed a decreased ability for detoxing so it all correlates well. We will be doing the ERMI again soon just to make sure our house is healthy.

 

Hope some of this helps for those of you debating some of the same issues. Best wishes on continued healing!

 

 

The Homeo K OXY is supposed to help with Oxytocin, a polypeptide hormone that acts primarily as a neuromodulator of the brain, say my scribbled notes from the conference last week where Dr. K. spoke about these things. This oxytocin regulates social recognition, sexual reproduction, bonding, anxiety (including that caused by babesia), and the ability to feel empathy. He commented, for example, men with too little will find it very difficult to stay committed to one woman, and in his typical charming way where you're not sure how serious he is or how much he's joking, commented it would be good to be more understanding with men experiencing these difficulties.

 

Yes, the ADH is the homeopathic version of vasopressin, ADH refers to anti-deuretic hormone.

 

My guess is these homeopathics like OXY and MAF work by getting the body to make more of this stuff. The GcMAF injections work more straightforwardly by adding more to the body. It's possible the homeopathics might have an added long-term impact of training the body to make more of this stuff, which could be desirable.

 

Best of luck with all this, the GcMAF injections have been great for me! (I'm feeling I may be done with them at this point, looking hopefully to my CD57 test again next week.)

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I'm glad you have a plan you sound comfortable with. I hope it bears fruit!

 

What is the ADH for? (I ask b/c DS9 continues to struggle with enuresis despite many many improvements in all other areas and it's really ticking him off).

 

We too had out LLMD appt yesterday for DD7 - the one with the EBV. Doesn't look like the artemisinin has done anything. Will finish our last two 5-day courses and then be done. We brainstormed several ideas and then we both, at nearly the same time, suggested l-lysine. Considering it kismit, that's what we're trying now. DD also has a dry cough - has had it for 6-7 weeks. So it's possible there's also a myco infection adding to the fatigue. So LLMD added 250mg zith. In two weeks, we may add bactrim depending on where we're at.

 

Gave the first dose of each last night. This morning, she still said she felt bad but her voice was stronger. She made it through her half day of school (couldn't get to school at all yesterday or Monday). And she's with the school tutor now with more energy in her voice (I am actually listening to the tutor be blown away by how immensely better DDs handwriting is today - those of you with that Pandas background can understand how giddy it makes you to listen to a stranger validate a symptom improvement). So I'm yelling at myself to not get too excited - but after so many months of seeing her "muted" it's just so good to see glimpses.

 

Last week, DS came down with a bad cold. He shared and early in the week, I started to feel run down too. Started popping andrographis, but it felt like I was losing the battle. So I took some l-lysine last night and this morning too and I feel way better. Realize not every cold or virus will respond to the l-lysine, but this one seems to be. So since it made me feel better, I guess that tempts me to think it's helping DD too. LLMD said if the l-lysine was going to help, it would work quickly. Hope I'm not deluding myself. But it's nice to feel optimistic after such a long stretch.

 

Julia - sorry to hijack. I hope you get to see lots of improvements quickly. Sounds like it holds much promise!

Edited by LLM
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What is the ADH for? (I ask b/c DS9 continues to struggle with enuresis despite many many improvements in all other areas and it's really ticking him off).

 

We too had out LLMD appt yesterday for DD7 - the one with the EBV. Doesn't look like the artemisinin has done anything. Will finish our last two 5-day courses and then be done. We brainstormed several ideas and then we both, at nearly the same time, suggested l-lysine. Considering it kismit, that's what we're trying now. DD also has a dry cough - has had it for 6-7 weeks. So it's possible there's also a myco infection adding to the fatigue. So LLMD added 250mg zith. In two weeks, we may add bactrim depending on where we're at.

 

Gave the first dose of each last night. This morning, she still said she felt bad but her voice was stronger. She made it through her half day of school (couldn't get to school at all yesterday or Monday). And she's with the school tutor now with more energy in her voice (I am actually listening to the tutor be blown away by how immensely better DDs handwriting is today - those of you with that Pandas background can understand how giddy it makes you to listen to a stranger validate a symptom improvement). So I'm yelling at myself to not get too excited - but after so many months of seeing her "muted" it's just so good to see glimpses.

 

Last week, DS came down with a bad cold. He shared and early in the week, I started to feel run down too. Started popping andrographis, but it felt like I was losing the battle. So I took some l-lysine last night and this morning too and I feel way better. Realize not every cold or virus will respond to the l-lysine, but this one seems to be. So since it made me feel better, I guess that tempts me to think it's helping DD too. LLMD said if the l-lysine was going to help, it would work quickly. Hope I'm not deluding myself. But it's nice to feel optimistic after such a long stretch.

 

Julia - sorry to hijack. I hope you get to see lots of improvements quickly. Sounds like it holds much promise!

Here is a wikipedia website for ADH which may or may not be accurate but has a lot of information in it:

 

http://en.wikipedia.org/wiki/Vasopressin

 

Not sure if this has to do with his thyroid problem or many other things mentioned in their description. Could see possible benefit in many areas...

 

Asked dr. about l-lysine and she said we could try it but she thought son was past that point after his other treatments. Best wishes on trying it - will be good to see how its' working.

 

I think our whole family went thru that cold too; hope everyone is feeling better soon! Was really good to see my son respond like everyone else though! Your right about needing something to feel optimistic about - glad you are seeing that something!

Edited by JuliaFaith
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The Homeo K OXY is supposed to help with Oxytocin, a polypeptide hormone that acts primarily as a neuromodulator of the brain, say my scribbled notes from the conference last week where Dr. K. spoke about these things. This oxytocin regulates social recognition, sexual reproduction, bonding, anxiety (including that caused by babesia), and the ability to feel empathy. He commented, for example, men with too little will find it very difficult to stay committed to one woman, and in his typical charming way where you're not sure how serious he is or how much he's joking, commented it would be good to be more understanding with men experiencing these difficulties.

 

Yes, the ADH is the homeopathic version of vasopressin, ADH refers to anti-deuretic hormone.

 

My guess is these homeopathics like OXY and MAF work by getting the body to make more of this stuff. The GcMAF injections work more straightforwardly by adding more to the body. It's possible the homeopathics might have an added long-term impact of training the body to make more of this stuff, which could be desirable.

 

Best of luck with all this, the GcMAF injections have been great for me! (I'm feeling I may be done with them at this point, looking hopefully to my CD57 test again next week.)

Thank you so much Michael for this information! Sometimes it gets tricky trying to figure out what all is going on and there is only so much time during a visit to get everything in that needs to be addressed.

 

So good to hear about your GcMAF injections working for you. Will really be looking forward to your progress report! Will send healing thoughts your way.

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  • 2 weeks later...

The Homeo K OXY is supposed to help with Oxytocin, a polypeptide hormone that acts primarily as a neuromodulator of the brain, say my scribbled notes from the conference last week where Dr. K. spoke about these things. This oxytocin regulates social recognition, sexual reproduction, bonding, anxiety (including that caused by babesia), and the ability to feel empathy. He commented, for example, men with too little will find it very difficult to stay committed to one woman, and in his typical charming way where you're not sure how serious he is or how much he's joking, commented it would be good to be more understanding with men experiencing these difficulties.

 

Yes, the ADH is the homeopathic version of vasopressin, ADH refers to anti-deuretic hormone.

 

My guess is these homeopathics like OXY and MAF work by getting the body to make more of this stuff. The GcMAF injections work more straightforwardly by adding more to the body. It's possible the homeopathics might have an added long-term impact of training the body to make more of this stuff, which could be desirable.

 

Best of luck with all this, the GcMAF injections have been great for me! (I'm feeling I may be done with them at this point, looking hopefully to my CD57 test again next week.)

Thank you so much Michael for this information! Sometimes it gets tricky trying to figure out what all is going on and there is only so much time during a visit to get everything in that needs to be addressed.

 

So good to hear about your GcMAF injections working for you. Will really be looking forward to your progress report! Will send healing thoughts your way.

 

 

Well, I failed my CD57 test again last week. I did start getting more fatigued again that week as well. After 16 days off the GcMAF injections, I tested for and took very large amounts yesterday and today. So this continues to cycle off and on for me. Feels a little better to still need this with the failing CD57 test, at least can still hope this will push me over the hill I'm trying to climb here. Also want to point out, I now have the Homeo K remedies, and do not test that the Homeo K MAF would be at all helpful, even during these days and moments when I test that the GcMAF injections would help a lot. So, while the Homeo K MAF might be a nice alternative for some, looks like for others the injections can help where the homeopathic cannot.

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Well, I failed my CD57 test again last week. I did start getting more fatigued again that week as well. After 16 days off the GcMAF injections, I tested for and took very large amounts yesterday and today. So this continues to cycle off and on for me. Feels a little better to still need this with the failing CD57 test, at least can still hope this will push me over the hill I'm trying to climb here. Also want to point out, I now have the Homeo K remedies, and do not test that the Homeo K MAF would be at all helpful, even during these days and moments when I test that the GcMAF injections would help a lot. So, while the Homeo K MAF might be a nice alternative for some, looks like for others the injections can help where the homeopathic cannot.

So sorry your CD57 test is not normal yet. Is a normal range on this test indicative of the GcMAF working or done working? Just curious if the numbers on your CD57 increased at all? Son has not done this test since over a year ago so would be interesting to run again.

 

We are waiting for the K MAF to arrive so have not tried yet, but will be using it in conjunction with Valcyte so not sure if that would work. I wonder if your body is just used to the GCMAF injections and knows that it gets more from those than the K MAF? Son is also starting Thorne K2 for inflammation.

 

Very interested to know about your 'pendulum testing' again. On my own, tried to learn some beginning muscle testing stuff and it is real interesting. Not sure how to use it on my son though.

 

Good to hear your updates. Will send healing wishes your way!

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The need for GcMAF is really indicated by a nagalase test, as too high nagalase levels can tell your body not to bother making the GcMAF yourself. I have seen progress on that nagalase number. Those tests take about a month to get results, so always a bit delayed, but based on progress with testing and additional GcMAF injections since then, seems my nagalase levels could be expected to be around normal if extrapolating results ends up being accurate. CD57 is more overall lyme, and I have just been hoping this is the last problem to take care of to get over the lyme hump, it may or may not be.

 

Possible I suppose the body thinks it doesn't want the homeopathic because it can just wait for the injections. I dunno though, it had been 16 days since an injection when I started back up, so that is not my guess, but who knows, for sure, yes, it could be a different result with the homeopathic given I have gone so far already with the injections. My CD57 has cycled up and down between the 30's range and the 70's range, last one was 74. Normally it has been lower when I have more of a war going on killing things, and higher when less fighting going on, not sure if I can read too much into the recent score of 74, been around there plenty of times.

 

I could never learn the muscle testing, that is the more common approach, but managed to learn with a pendulum. Certainly you can learn to do the muscle testing on other people such as your son, that is what so many practitioners use. Hopefully you can find someone interested/willing in teaching you.

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  • 1 month later...

So...I usually hang out in the PANDAS/PITANDS forum but now exploring GcMAF.

My son has autism, absence seizures, food and environmental allergies, positive

Anne Connolly test, high nagalase (1.5-ish), PANDAS last year (which resolved with

homeopathy), etc. He is 13.

 

Is anyone seeing results with the homeopathic version of GcMAF? If yes, what form?

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