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Experiences with Homeo KMAF?

Discussion in 'GcMAF' started by Symptomatic, Oct 30, 2012.

  1. Symptomatic

    Symptomatic Senior Member

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    Hi all,

    I'm new here. Not sure of my diagnosis, but some of my lab results are as follows: positive ANA in the past, elevated CRP, hypercalcemia, excessively high 1,25D, immune suppression indicated by low C3a and IgG sublass 3 deficiency (also have borderline IgG subclass 1 deficiency). Normal thyroid hormones but with elevated rT3. Negative (?) for Lyme and coinfections. Had mono, so assume positive EBV. Lab positive HSV, HHV6, and Human Parvo. High cholesterol and triglycerides.

    The mono was in the mid-80s. Last year I noted my 25D was low, which led me to discover my calcium was high (and had been for at least the past 12 years). I suspected hyperparathyroidism, and although that can occur with low-normal PTH levels like mine, was eventually ruled out. Along the way, an endocrinologist tested my 1,25D, which was 140.7 pg/mL. Negative chest X-ray.

    My internet research led me to the Marshall Protocol. While I have issues with some of what they do/how they do it, I decided trying Benicar (olmesartan) wouldn't hurt and might help. My GP and endocrinologist didn't seem willing to go along, so I found an integrative physician who was, and started the Benicar in August 2011, then Minocycline in late November 2011. My 1,25D and calcium were coming down nicely, and my PTH went from low-normal to normal.

    My doctor also wanted me to try curcumin, which I started in December 2011. My 1,25D and calcium headed back up through the spring/summer, and I stopped it back in July. I feel strongly that since curcumin acts at the VDR, and I clearly have issues there, that it was interfering with Benicar's action (note: my doctor does not agree with this, he feels I was "detoxing", but I don't agree and am not willing to have hypercalcemia and all the symptoms that go with that). I am waiting for a few months before retesting 1,25D and calcium, as it took 3-4 months to get it down when I started back in 2011.

    I am also currently taking Azithromycin, Malarone, and LDN (low-dose naltrexone), so I don't really fit in the Marshall box since they frown upon that. My doctor has also talked on and off about IVIG, but I'm not ready to do that yet. Our most recent discussions related to Transfer Factor and GcMAF. I had my blood drawn for Nagalase testing on October 8, so still waiting for results. I have ordered and received Homeo KMAF while waiting, and started it last night (I suspect my Nagalase will come back high, and my doctor suggested starting right away).

    There hasn't been much activity in this part of the forum lately, but I've joined in the hopes of getting more info on Homeo KMAF from those of you who have tried it or have knowledge about it (Sushi?). I am trying to avoid the injections if at all possible, but might consider them if I have to. I don't think I could stomach the yogurt version.

    Anyway, thanks for listening, and I am hopeful that someone can provide more info about my upcoming ride with Homeo KMAF.
     
  2. suzanne

    suzanne Senior Member

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    Hi
    Happy to continue with PM, but I thought I should post some early responses to the KMAF in case it helps others down the track. It is early days for me on KMAF...I will outline what I think is happening , on a very small dose!

    Others hear know the background which is that I took 20ng of GcMAF each week for about 4 weeks and had some signs that it might be helpful ( days 4-7 in each cycle where better). However, by week 4 I crashed with severe inflammation symptoms and it has taken a good 3+ months for that to settle.

    I am now taking benicar and that has helped break my rolling migraine cycle, so I am staying with this medication for now. Unlike Marshal Protocol I only take about 1 mg every 6-8 hours rather than 40 mg!!!! it may be hard to believe that such a tiny dose can do any thing but I can feel the itchy skin and increased back ache and hip pain, even on this tiny dose. It is definitely having an immune activation effect of some kind. I am mainly keen to stay with it as my migraines have been so much better in this last 2 week period.

    So, I added KMAF, one drop a week ago ( last Sunday). I did not think much more about it until tonight and so I went back in my diary to review my notes. I have noted in my diary that Tuesday a was a shocking day. I kept thinking I was about to vomit and just felt seriously unwell. That evening I did vomit after dinner. Now this may be coincidence or a bug, but I will pay more attention after my next dose. Tonight ( 6 days later) I took another drop of the KMAF. I will continue to keep my diary notes of symptoms each day, and I will report in next week on whether there is any noticable pattern. I do notice that I am very itchy all over at the moment and I took my KMAF a few hours ago. I will try and track my reactions a bit more closely this week in case there is something happening here.

    To be honest, I have always thought that homeopathics are a load of bunk and so I did not really expect anything to eventuate from these drops.

    Fingers crossed that it might be more tolerable for me than the GcMAF. And that if we get more feedback here over time, this may be of some use to others.

    I realise that others have taken between 3-10 drops a day. It does seem ridiculous to be on such a tiny dose ( and notice anything), but my experience to date is that I am really reactive to anything that stimulates my immune system. It is too soon to be definite about any of my reactions being linked to KMAF but over time there may be more to report.

    warmest
    Suzanne
     
  3. maryb

    maryb iherb code TAK122

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    Suzanne there is definitely more to homeopathy than anyone including scientists can explain. I have always had a very powerful response to even tiny amounts so can understand you taking it a drop a week and assessing your responses, very important especially for us with this illness.
    Hope it works for you and you see some improvement.
     
  4. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Does it say anywhere what the potency (dilution) of KMAF is? I ask because with homeopathy, the more dilute (which is a higher potency) the stronger the effect...usually!

    Sushi
     
  5. Forebearance

    Forebearance Senior Member

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    Thank you for the report, Suzanne. That was really helpful. I might try KMAF next, since MAF 314 is probably too hard for me.

    Hey Symptomatic, I am also skeptical about your doctor's idea that curcumin would be making you detox. It's supposed to be an anti-inflammatory, isn't it? Anti-inflammatories shouldn't be causing detox!

    Forebearance
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Is 1,25D, talking about your Vitamin D level or something else?

    GG

    PS How long have you been on LDN, and are you doing better?
     
  7. Symptomatic

    Symptomatic Senior Member

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    Hi all,

    Thanks for your responses!

    I started the KMAF last Monday (10/29), 5 drops/day per doctor. I, too, feel like it's doing something. The best I can describe is that it makes me feel weird/woozy, and also slightly nauseous (nausea seems to be a typical response for me, it's happened with all antibiotics I've been taking as well as Malarone).

    Forebearance: Yes, curcumin should be anti-inflammatory. My CRP didn't budge while I was on it, and as mentioned, my 1,25D and calcium both started going back up. As an aside, my sister's acupuncturist suggested curcumin to her as well, as she has Hashimoto's. She doesn't have my 1,25D problems, and never had high calcium in the past. After 6 months on curcumin (different brand than mine), her calcium spiked high. I believe we have a genetic VDR thing going on here, as I don't think hypercalcemia is a normal response to curcumin.

    GG:1,25D is talking about the *active* form of Vitamin D, the one not typically measured. In healthy people, 25D (the inactive precursor, which is generally measured) tracks with 1,25D, so they measure it because it is cheaper and easier. I would be considered "Vit D deficient" if you looked at my 25D levels. My GP had actually been pushing me to take a VitD supplement, which I did during May 2011 until I realized I had hypercalcemia, at which time I stopped immediately. My 25D was usually around 20 ng/mL until I started Benicar, now it's below 10 ng/mL. 1,25D started at 140 pg/mL, came down to 67 then 47, then headed back up to 98 after several months on curcumin. I stopped the curcumin in late July, waiting a few months to see if 1,25D and calcium go back down.

    I started LDN in late April. It's hard to say if it's helping. Most of this year I've been feeling pretty good, but that is deceiving since my CRP is still elevated, along with cholesterol/triglycerides. So I'm not where I need to be, the inflammation still persists. Doctor thinks LDN is good for immune support, and to me it's worth a shot.

    Our goals right now for me are: "kill more bugs, provide more immune system support".

    Does anyone here have issues with (or knowledge of) excess phlegm as an inflammatory symptom? Particularly after eating? That was one of the earliest weird things that started happening to me, and one that still hasn't ever resolved.
     
  8. suzanne

    suzanne Senior Member

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    Hi all...sorry to just drop in and then out again. I will post more fully later.

    Sushi:
    The bottle of KMAF is not written in english but states:
    Alkohol, (I assume alcohol based). Someone may be able to translate the rest:
    Desierempfehiung, wenn nicht.
    anders angegeben 3x6 Trofen.
    Mind. 10Min Abstand zum Essen

    Symptomatic: You reported your 1,25 D is 140 pg/mL. If I convert my results I have a comparable reading of 691 pg/mL (someone might check my maths as follows:)

    In Aus they measure 1,25D as pmol/L, mine was 266 pmol/L. Based on the conversion as follows: 1 pmol/ 2.6 pg/ml, then I think my reading would be 266 pmol/L multiplied by 2.6 = 691.6pg/ml.

    My dr really did a double take when she saw my levels and started to dictate that I change my diet and sun exposure. It was after she saw these results that she recommend that I try Olmesartan, again. I am glad I took her advice- the results in a few weeks are encouraging.

    i know I have a double mutation Vit D receptor mutation on the VDR TAQ genome. This may prove to be significant , when the research catches up with the types of protocols we are all started to tinker with.

    The frustration is that no one can tell me how olmesartan and the KMAF or GcMAF may work together. For now I am sticking with the olmesartan as it has broken my intractable daily migraine cycle when nothing else seemed to make a difference. I have reported before, that I have noticed a difference in how I feel even though I am only taking about 1 mg of olmesartoan every 6-8 hours. I am taking a total of between 3-5 mg a day. I seem to be very sensitive to the dosing this time around- I used to be on 160mg of this a day when I did MP around 3 years ago.

    Talk again soon.
     
    GcMAF Australia likes this.
  9. suzanne

    suzanne Senior Member

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    My apologies- I have done a bit more reading and I think that my conversion calculation for 1,25 D is not right.

    266 pmol/L (Aus) is equivalent to 111 pg/ml in U.S.

    Symptomatic : your reading is really very high at 140.

    The MP people ( not that I follow their stuff religiously) indicate that a level of 1,25 D above 60 pg/ml indicate well perfused inflammation where the inflamed tissue is close to the blood stream. They say this means lung or heart involvement.

    They are of the view that high 1,25 D is always a sign of TH1 inflammation and intracellular bacterial infection.

    I did so well on the MP for 21/2 years and then it quite suddenly no longer helped me and I slipped back into chronic unwellness quite quickly- and no one on that site can explain that. So I am not inclined to go down the same path again. That said, there is definitely something in my 1,25 D reading, Vit D genome mutations and response to olmesartan ( and probably GcMAF, if I can get the dose down small enough to tolerate).

    Suzanne
     
  10. Symptomatic

    Symptomatic Senior Member

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    Greg Blaney (a physician who is probably the most experienced with MP-like protocols, though I get the feeling he is willing to consider and use additional modalities) wrote a paper and did a presentation on high 1,25D values that can be found here: http://mpkb.org/home/publications/blaney_annals_2009

    My 1,25D level is higher than any value on the slide in this presentation, that really put some fear into me. I contacted Dr. Blaney last year, who was quick to point out that none of the patients in that study had hypercalcemia, where I do. I asked his opinion on what he thinks could be causing such a high value for me, and he mentioned sarcoidosis. This was also suggested to me by one of the CIR nurses - I sent my 1,25D value and she also mentioned sarc. My chest X-ray was negative, so sarc wasn't pursued by my GP or endocrinologist. Sounds like some scientists (besides Marshall) believe that sarc is caused by bacteria, so whether or not I actually have it is kind of irrelevant to me.

    Since putting an exact name to whatever I have wasn't going to change my path, we aren't really tesing anymore to try to figure out exactly what bug (bacteria/virus/parasite) could be at play. In my case, it's clear the 1,25D needs to come down. Benicar is working for me in that regard, but I still have other unresolved symptoms and out of range lab values, hence my departure from strict MP and into other potential treatments.

    My doctor didn't hesitate to suggest KMAF to me, knowing I am currently on Benicar, Minocycline, Azithromycin, Malarone, and LDN. If the nagalase comes back high and doesn't go down with KMAF, I will have to seriously consider GcMAF injections. I will give the KMAF several months before I make any decisions.
     
  11. Symptomatic

    Symptomatic Senior Member

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    I also just wanted to say that although I am very excited about Benicar as a part of my own treatment plan (because it is working for me for at least one layer of my problems/symptoms at this time), I believe we are each an experiment of one and am not suggesting this (or any other treatments I'm trying) is appropriate or necessary for others.
     
  12. Forebearance

    Forebearance Senior Member

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    Here's what I think the label says:

    Desired usage, if nothing else is given, 3 x 6 drops.
    Minimum 10 minutes away from eating.

    It's kind of cryptic, but hopefully people who take homeopathic stuff will understand it.
     
  13. suzanne

    suzanne Senior Member

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    Thanks for the translation Forebearance.
    Wow, that is a large dose.
    I have been taking the KMAF as 1-2 drops once a week. On both occaisons I felt quite a bit worse on days 2-4. I noticed increased headache and nausea- tired too.
    18 drops a day- I just can't imagine what that might do to me.

    I am going to stay with the 1-2 drops once a week for a while and slowly titrate up as I feel ready. Of course. I am taking benicar at the same time and this also activates the immune system.

    I will keep in touch about progress as it seems others who have tried the KMAF route have gone a lot faster, crashed and then seemed to have disappeared from here!...more is the pity.
     
  14. Symptomatic

    Symptomatic Senior Member

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    Due to some comments in the MAF 878 thread, I thought I would throw this out here. I've always had horrendous periods (heavy bleeding, bad cramps)...I was on the pill for ~27 years and just got off a few months ago and started taking bioidentical progesterone (estrogen levels were OK but progestone was WAY low).

    My first few periods off pill/on progesterone still involved heavy bleeding, but no cramping. Cycles were 28-31 days.

    I started KMAFon 10/29, and my next period came on Day 19! Didn't think of it possibly being due to KMAF until I read the other thread, and didn't want to post there since they are trying to stay on topic for folks on MAF 878. I will keep an eye on this going forward.

    I am still taking 5 drops/day of KMAF, still waiting (impatiently!) for nagalase results, and if they come back elevated I will increase my KMAF dosage since I'm not crashing at this dose.
     
  15. Forebearance

    Forebearance Senior Member

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    Who says you have to titrate up, Suzanne? If your dose is working well for you, why mess with success?

    Fore
     
  16. dece

    dece

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    Hi all,

    Forebearance was pretty right, the label says: daily dose 3x6 drops unless indicated otherwise (by your physician)
    And indeed, minimum 10 minutes separated from food.

    All the best
     
  17. suzanne

    suzanne Senior Member

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    Hi Fore, and others
    I am not intending to titrate my dose unless my body seems ready. Having had to deal with what I assume was IRIS after only a month on GcMAF, I am going a lot more cautiously.
    I am currently taking a very very small dose of Olmetec and it has almost stopped my rolling daily migraine. I have been on the benicar about 4 weeks. Don't get me wrong, the Olmetec is no picnic. Anything that boosts my immune response seems to cause me some increased level of symptoms, but overall I am definitely making improvement..I have a bit more energy and definitely fewer migraine issues, and that alone is a huge blessing. I can also report another odd fact. I noticed that my thick white coating on my tongue is much cleare. It is an odd thing to report, but is definitely improved

    I have only added 1 drop a week of the KMAF at this point and am nervous to go faster. I reckon I am precariously balanced (at least that is how I feel and I have also experienced the IRIS response and it was a bit alarming). So there is definitely a more cautious approach needed this time. I am also getting tired of a stop start approach to so many of the protocols I have tried. As I have only been on the Olmetec for a month I may see how I am doing at about the 8 week stage and perhaps consider going to 1 drop every 4 days.

    I have taken about 3 doses of the KMAF so far, and even on this smallest of doses, I can feel my symptoms peak at about day 3 or so. It is too soon for me to say this absolutely, but I normally record increased head pain, more tiredness and some increased feeling of unwellness on those days.

    Thanks to all for translating the instructions. There is NO way I could be taking 6 drops x3 a day. But this is interesting.
     
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  18. GcMAF Australia

    GcMAF Australia Senior Member

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    hi Suzanne
    Interesting to read about your high 1,25D of 266 pmol (from homeopath post) and useage of benicar. I know the MP is a bit unfashionable. Chronic Illness Recovery is apparantly organised better than MP https://chronicillnessrecovery.org/
    They use the benicar. I have some good reports from a couple of Sarcoidosis people>
    I think Dr D is using Chronic Illness Recovery (not sure)
    A number of Lyme people are going to him, and he is helping them.
     
  19. GcMAF Australia

    GcMAF Australia Senior Member

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    Suzanne
    My finding from looking at the KMAF website is that this homeopathic preparation contains homeopathic things BUT the GcMAF component is straight forward ie basically the same as the GcMAF of other producers!!!
    • Many bacteria are known to intefere with the functioning of VDR by producing inhibitors that bind to it.Olmesartan medoxomil (trade names: Benicar in the US, Olmetec in EU and Canada, WinBP, Golme in India, Erastapex in Egypt) is theorised to bind to the VDR, displacing the bacterial inhibitor and allowing the VDR to function again
    • This problem is mentioned at the website of GcMAF.eu http://www.gcmaf.eu/info/, but probably not at other sites such as KMAF
    • This mechanism is explained at Chronic Illness Recovery which is apparantly organised better than MP https://chronicillnessrecovery.org/
      They use the benicar. I have some good reports from a couple of Sarcoidosis people>
      I think Dr Durham is using Chronic Illness Recovery (not sure)

      Many Regards
      GcMAF
     
  20. suzanne

    suzanne Senior Member

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    Hi GcMAF

    Yeah, it is fascinating that i have high 1-25 D and seem to get a reaction with the benicar and also the GcMAF. I am sure there is something in the Vit D theories that abound.

    That is really interesting about the KMAF having some GcMAF in it! I have no reason to doubt that the homeo has real components in it- I definitely feel the effects after about 3 days.

    I am really struggling at the moment with a dose of benicar that is tiny- about 1.5-2 mg three times a day. I have been on it for 4 weeks. The first 2 weeks I took a total daily dose of about 25 mg and did really well ( probably due to the anti inflammatory pathway of this drug). But after 2 weeks I had bad itching and headaches and was forced to reduce the dose. I can only assume ( from my research) that it was at about this point that my vit D blockade may have started kicking in , and therefor the immune system. I felt really toxic in my sickness.

    So, I have reduced down to this really small daily dose.

    Thanks for the Chronic Illness links, I too have read these adn made contact. I am not sure that they can offer me much more assistance than I can get myself thru trial and error with the benicar dose. I have even trialled stopping the benicar for 2 days, but felt so horrible, that I have kicked it back in again. It is really tricky to work out quite what the optimal dose is for me at this point.

    As I am struggling with the kicking in of my immune system on this tiny benicar dose, I have not taken my KMAF for about 2 weeks.

    I am going to go back to add the KMAF again soon - whenever my current symptoms settle.

    It is really frustrating to not be able to proceed very fast. I used to be able to take 140 mg of benicar a day. But this time around, I can only seem to handle under 10mg! hard to believe , but true. Perhaps I am sicker now than I was and this is the only pace my bodies detox pathways will handle- or something like that!

    I read everyones progress on the GcMAF with much interest. I feel better on both benicar and GcMAF than not- trouble is , I get chronic inflammatory symptoms and it is a struggle to work out what I can tolerate. My starting dose of GcMAF at 20ng was definitely too high. It seems that many others find that too.

    When I add the KMAF back in I will report on progress.

    S
     
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