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Did KDM's treatment help you or did you get worse?
- Thread starter bedman
- Start date
Sushi
Moderation Resource Albuquerque
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Yes, a great deal better.
Sushi
Sushi
Hi Bedman - im also thinking of going to see him. My M.E is not so severe now so i figure that i can probably tolerate treatments better than i could have in the last few years. I wonder if it is those who are more severely ill who have a harder time.
I tried searching on the boards for threads about his clinic but kept getting no results found - which seemed odd - im sure his treatments have been discussed many times before.
All the best Justy.
I tried searching on the boards for threads about his clinic but kept getting no results found - which seemed odd - im sure his treatments have been discussed many times before.
All the best Justy.
Sushi
Moderation Resource Albuquerque
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Hi Justy,
It is more what you are severely ill with! With some test results you may have problems with GcMAF. After a couple years of experience with GcMAF he screens carefully before giving it.
Sushi
It is more what you are severely ill with! With some test results you may have problems with GcMAF. After a couple years of experience with GcMAF he screens carefully before giving it.
Sushi
Hi Sushi, to be honest im not that keen on trying GcMAF at the moment. Im concerned about the whole inflammation issue. I have to be especially careful of immune stuff as i have a lung problem. But i am interested in the testing he does and his approach through the gut makes a lot of sense to me. Even if the gut is not the starting point - mine feels so messed up these days i dont know what to do with it anymore!
take care, Justy.
take care, Justy.
Sushi
Moderation Resource Albuquerque
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Or, you could try MAF 878 and see if it helps. Too bad they haven't made the starter available from the UK. I guess the shipping is a lot.
Sushi
Sushi
filfla4
Senior Member
- Messages
- 236
I've been seeing KDM for 18 months now. I was rigorous with his treatment last year for about six months and saw a lot of improvement. I had to stop the treatment for about six months for family reasons. I am now getting back on track. I think that KDM's approach and testing makes an enormous amount of sense. With me, from the outset he said that my profile didn't fit that of a typical ME patient and he wanted to get to the bottom of it. He persisted and carried on checking various things until finally this March I tested positive for Lyme by PCR at Redlabs and confirmed by DNA Sequencing at the University of Liege. KDM was almost "excited" about this diagnosis because he knew he had solved the puzzle. I have just started IV abx treatment for the Lyme this week which will continue for 4 weeks. After that I will switch oral abx and probably restart the GcMAF once again.
Good luck!
Good luck!
Vojta
Senior Member
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- Czech Republic
After more than year of treatment under KDM I have no improvement. I have gut dysbiosis and reactivated EBV. I had been taking GcMAF for 31 weeks. Now I've been on Valaciclovir for few weeks.
I could say same thing as cansado. I am not responding to medications so he is still missing something.
I could say same thing as cansado. I am not responding to medications so he is still missing something.
One person writes about his personal experience visiting KDM on his blog here:
http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/
I have not visited him myself.
I met one woman who saw him. She improved although I feel she was not that ill to begin with. He put her on a fructose + lactose free diet and gamma globulin.
She told me she did not improve on gamma globulin much when I last talked to her. However she had a massive improvement avoiding fructose and lactose. I already avoid those things without paying a fortune to his clinic.
I also get the impression that some improve and some don't on his treatment.
http://www.pugilator.com/personal/first-visit-to-himmunitas-and-prof-dr-de-meirleir/
I have not visited him myself.
I met one woman who saw him. She improved although I feel she was not that ill to begin with. He put her on a fructose + lactose free diet and gamma globulin.
She told me she did not improve on gamma globulin much when I last talked to her. However she had a massive improvement avoiding fructose and lactose. I already avoid those things without paying a fortune to his clinic.
I also get the impression that some improve and some don't on his treatment.
Sorry, but I've suddenly found a better blog post from the same author on Dr DeMeirleir.
http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/
This was written years after he finished his treatment. (See my edit below.)
The address and information about his clinic in Brussels is on this webpage. So it is useful if you still decide to go.
Edit: I have just talked to someone who was helped by him. I found out that the webpage/blog link I posted is biased against KDM for a reason and that really he has helped a significant number of people.
http://www.pugilator.com/awareness/prof-dr-kenny-de-meirleir-and-himmunitas/
This was written years after he finished his treatment. (See my edit below.)
The address and information about his clinic in Brussels is on this webpage. So it is useful if you still decide to go.
Edit: I have just talked to someone who was helped by him. I found out that the webpage/blog link I posted is biased against KDM for a reason and that really he has helped a significant number of people.
Vojta,
I also tested positive for those. Do you have any clue why GcMaf is not kicking in? I had 38 full doses shots without any results. I don't respond to medicine although there are a few antibiotics which made a little difference.
Maybe it is the leaky gut? It is difficult situation for me as I want to research but the brainfog and concentration issues are preventing me from doing this.
Even the diet I am following doesn't give me much improvement. I have a few moderate intolerances which I avoid and this helps a little.
I am thinking of homeopathic might be more in the lining of my body.. I am clueless however I might return to KDM just for some testing...
Vojta
Senior Member
- Messages
- 167
- Location
- Czech Republic
Cansado,
I don't know why GcMAF doesn't work for us but I suppose leaky gut could be the problem. Diet and probiotics don't give me much improvement too although at least I don't have stomach pains when I follow the diet.
My immunologist told me I have some traces of Borrelia and Anaplasma in my blood so it could be hidden problem for me. I'm going to try pursuing these bacterias now. But I have already tried different antibiotics and I have never seen any effects. Maybe I need higher doses or some combination. But I'm too brainfogged to research like you...
I don't know why GcMAF doesn't work for us but I suppose leaky gut could be the problem. Diet and probiotics don't give me much improvement too although at least I don't have stomach pains when I follow the diet.
My immunologist told me I have some traces of Borrelia and Anaplasma in my blood so it could be hidden problem for me. I'm going to try pursuing these bacterias now. But I have already tried different antibiotics and I have never seen any effects. Maybe I need higher doses or some combination. But I'm too brainfogged to research like you...
- Messages
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filfla4~ I was diagnosed with Lyme...CDC +, as well as Bartonella and babs. Also the usual EBV titers.
My body reacts Terribly to the GCMAF. I mean really bad. And I take a miniscal dose. I have felt close to ER trips
after injections. I am hearing most lyme + patients are not resonding to it very well at all.
I am seeing a new specialist who is starting me back on antibiotics and possibly IV's soon. My hips are very bad and I am still quite young. From what I am reading, am I missing the good results? I'm not on here enough to catch the happy stories.
So, I am confused on what to do... My new LLMD/ND said he feels I should stop. What do I do then w/ 1 1/2 vials?
That is a lot of money and if it is helping patients with cancer...should I donate or sell it to them? Have anyone of you used it for cancer or HIV purposes or heard of anyone?
The initial dr. (dr. klinghardt), who said..."you need to take gcmaf for 3 months and I gaurantee you will be almost 100% better", obviously did not understand the bold statement of that. I have not heard of one lyme patient benefiting physically from this. I have heard of their nagalase going down, but no physical benefits. Of course I do not know all lyme patients and all lyme patients who have used this.
It just makes me question why our bodies react so vehemently poorly to this? And I wish I had a good doctor to explain the biological affects. Dr. K wouldnt answer. Obviously he couldnt explain.
Any thoughts? are you guys who are going on IV's still taking gcmaf?
Thank you~
Barbara
My body reacts Terribly to the GCMAF. I mean really bad. And I take a miniscal dose. I have felt close to ER trips
after injections. I am hearing most lyme + patients are not resonding to it very well at all.
I am seeing a new specialist who is starting me back on antibiotics and possibly IV's soon. My hips are very bad and I am still quite young. From what I am reading, am I missing the good results? I'm not on here enough to catch the happy stories.
So, I am confused on what to do... My new LLMD/ND said he feels I should stop. What do I do then w/ 1 1/2 vials?
That is a lot of money and if it is helping patients with cancer...should I donate or sell it to them? Have anyone of you used it for cancer or HIV purposes or heard of anyone?
The initial dr. (dr. klinghardt), who said..."you need to take gcmaf for 3 months and I gaurantee you will be almost 100% better", obviously did not understand the bold statement of that. I have not heard of one lyme patient benefiting physically from this. I have heard of their nagalase going down, but no physical benefits. Of course I do not know all lyme patients and all lyme patients who have used this.
It just makes me question why our bodies react so vehemently poorly to this? And I wish I had a good doctor to explain the biological affects. Dr. K wouldnt answer. Obviously he couldnt explain.
Any thoughts? are you guys who are going on IV's still taking gcmaf?
Thank you~
Barbara
filfla4
Senior Member
- Messages
- 236
@ Lerae
I took GcMAF for 7 months last year from January to July. Although the first few months were very tough, by about April I saw a lot of improvement. I was also taking VitB12 injections, Nexavir, Chlorella, Stomach Meds and monthly courses of abx. I stopped the treatment because my son was diagnosed with a brain tumour and I was juggling an enormous amount. I was feeling better and I simply let my own treatment slip.
I tested positive for Borrelia for the first time this April. I had tested negative prior to that. It could be that the increase in macrophages brought the sprochetes out of hiding. It could also be that the very very tense and worrying situation I have been in is an ideal climate for the bugs to proliferate. Another factor is the fact that the lab I use has recently improved it's way of testing. I tested positive by PCR and this was confirmed by DNA Sequencing.
I'm afraid I can't advise on GcMAF and Lyme. I haven't had GcMAF since last summer. I am in the middle of a 4-week course of IV abx for Lyme. I am struggling at the moment and although I'm planning to restart the GcMAF and have recently bought a new supply, I won't do so until I feel that the initial herxing is under control.
You might like to check out this site: http://www.betterhealthguy.com/joomla/index.php I know that Scott was using GcMAF as part of his battle against Lyme.
I took GcMAF for 7 months last year from January to July. Although the first few months were very tough, by about April I saw a lot of improvement. I was also taking VitB12 injections, Nexavir, Chlorella, Stomach Meds and monthly courses of abx. I stopped the treatment because my son was diagnosed with a brain tumour and I was juggling an enormous amount. I was feeling better and I simply let my own treatment slip.
I tested positive for Borrelia for the first time this April. I had tested negative prior to that. It could be that the increase in macrophages brought the sprochetes out of hiding. It could also be that the very very tense and worrying situation I have been in is an ideal climate for the bugs to proliferate. Another factor is the fact that the lab I use has recently improved it's way of testing. I tested positive by PCR and this was confirmed by DNA Sequencing.
I'm afraid I can't advise on GcMAF and Lyme. I haven't had GcMAF since last summer. I am in the middle of a 4-week course of IV abx for Lyme. I am struggling at the moment and although I'm planning to restart the GcMAF and have recently bought a new supply, I won't do so until I feel that the initial herxing is under control.
You might like to check out this site: http://www.betterhealthguy.com/joomla/index.php I know that Scott was using GcMAF as part of his battle against Lyme.
I am "under his wings "now and taking GcMAF, 4ME, lactoferring, antibiotics and probiotics, and b12, i have seen an improvement , but i have just started and my disease fluctuates a bit
i am so greatful in having a doctor who does testing and interprets the results, before i had to be my own doctor,
it has been hard having to go to my parents for the money but i hope that it will be worth it,
is anyone else taking 4ME?
i am so greatful in having a doctor who does testing and interprets the results, before i had to be my own doctor,
it has been hard having to go to my parents for the money but i hope that it will be worth it,
is anyone else taking 4ME?
I was diagnosed with Borrelia, Bartonella and Cpn (not by KdM) and the MAF314 has been working well for me.
I also started out with abx but then after a while they stopped working. So I tried biofilm-reducing enzymes and abx started working again. Then my improvements again to plateau so went for Maf314 and improved a bit more.
In the meanwhile I took my amalgams out and did some chelation which helped a bit more.
I don't think there's a safe and unique road to recovery, it seems to me more like to a trial and error process.
I also started out with abx but then after a while they stopped working. So I tried biofilm-reducing enzymes and abx started working again. Then my improvements again to plateau so went for Maf314 and improved a bit more.
In the meanwhile I took my amalgams out and did some chelation which helped a bit more.
I don't think there's a safe and unique road to recovery, it seems to me more like to a trial and error process.
Sushi
Moderation Resource Albuquerque
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Hi Alexa,
4ME is the name in Europe for Nexavir, so probably a good number here are taking it under one name or another. It has another name in New Zealand. I am taking it too.
Best,
Sushi
filfla4
Senior Member
- Messages
- 236
@ Alexa
4ME is identical to Nexavir. I have been on it for 18 months. They changed the name/packaging a few months ago.
filfla4
4ME is identical to Nexavir. I have been on it for 18 months. They changed the name/packaging a few months ago.
filfla4