Is it stomach biopsies or colon biopsies? Just curious. Do you know if he is looking for just XMRV or is he looking for entiroviruses as well?
GcMAF for XMRV--Gc protein-derived macrophage activating factor--anyone taking it?
- Thread starter Sushi
- Start date
August59,
In the forum where I saw this it was reported as stomach biopsies and only mentioned looking for XMRV. But, this is a patient forum and translated from Dutch, so not a study and the translation could have skewed the meaning.
Since KDM knows the importance of gut abnormalities, seems like if he were going to do a biopsy he would look for other things than XMRV--but this is just supposition.
Sushi
In the forum where I saw this it was reported as stomach biopsies and only mentioned looking for XMRV. But, this is a patient forum and translated from Dutch, so not a study and the translation could have skewed the meaning.
Since KDM knows the importance of gut abnormalities, seems like if he were going to do a biopsy he would look for other things than XMRV--but this is just supposition.
Sushi
Just back from my second visit with KDM, now 6 weeks into my GcMAF injections. Just a few things i thought i would mention.
- Earlier i had said that GcMAF needed to be kept frozen... that's what the nurse told me. I asked KDM about this and he said it was not the case as it will store in ambient room temperature for a couple of weeks. This makes transport a lot easier!
- I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
- He said i should know if its going to work for me after about 15 weeks on it. He said it seem to work a lot of the time on lower VDR responders too but it just takes more time.
- He said his daughter is fully recovered after her treatment on Nexavir and GcMAF. She is now back in college full time after being unwell with CFS for years.
- I asked him if it was a case that 50% of patients were doing well on GcMAF + Nexavir and he said more like 80%
- I asked if it was true that GcMAF works better in summer time when you are exposed to more sunlight but he said this was not true. He said when you go on GcMAF your Vitamin D spikes very high anyway. he said you should not take Vitamin D while using it as you will be getting too much Vitamin D which is very toxic.
Thats all i can remember right now
)
- Earlier i had said that GcMAF needed to be kept frozen... that's what the nurse told me. I asked KDM about this and he said it was not the case as it will store in ambient room temperature for a couple of weeks. This makes transport a lot easier!
- I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
- He said i should know if its going to work for me after about 15 weeks on it. He said it seem to work a lot of the time on lower VDR responders too but it just takes more time.
- He said his daughter is fully recovered after her treatment on Nexavir and GcMAF. She is now back in college full time after being unwell with CFS for years.
- I asked him if it was a case that 50% of patients were doing well on GcMAF + Nexavir and he said more like 80%
- I asked if it was true that GcMAF works better in summer time when you are exposed to more sunlight but he said this was not true. He said when you go on GcMAF your Vitamin D spikes very high anyway. he said you should not take Vitamin D while using it as you will be getting too much Vitamin D which is very toxic.
Thats all i can remember right now
)I am really encouraged to learn that KDM is going to be looking for XMRV in GI biposys. (If I am understanding this right). It only seems logical, and its substantiated by the fact that when they infected the monkeys at Emory, they found XMRV in the GI tract. And of course we all have GI symptoms. Hopefully he will write a paper about his findings.
Thanks so much Ronan for posting this!
I am just preparing to travel to Belgium for my first visit with KDM and with all the prep, travel and $$, it is great to hear some encouraging news. Also great that you are not as poor a responder as you thought. I am worse! But it is hopeful that maybe more treatments will make it effective.
Did he have any comments on the apheresis technique that someone proposed for people who are low responders?
Also, did he seem confident in the accuracy of RedLab's VDR test? So many of us are coming back as poor responders....
Thanks again,
Sushi
I am just preparing to travel to Belgium for my first visit with KDM and with all the prep, travel and $$, it is great to hear some encouraging news. Also great that you are not as poor a responder as you thought. I am worse! But it is hopeful that maybe more treatments will make it effective.
Did he have any comments on the apheresis technique that someone proposed for people who are low responders?
Also, did he seem confident in the accuracy of RedLab's VDR test? So many of us are coming back as poor responders....
Thanks again,
Sushi
Acer some docs r looking into entero retrovirus as well. It is knw to cos gastrititis or IBS too. So their might be a connection there as well and since they are all retroviruses the same ARV will work on all of them. Personally for me, i think cfs is an immune system disorder which allows all these infections into us and depending on what is attacking u at that time or where u are, diff viruses can then set it. It explains the myraid of different symptoms that we have.
If that is the case then XMRV is a cross species virus ( murine: from mouse) so it might not be it. It cud be too new. Of course that is not to say that it has been around all this while and just happened to be opportunistic. But it seems more likely that a virus that human being have been exposed to for a long time that MOST OF THE POPULATION have already built resistance to, is infecting us. In that case I wud look at older viruses, and viruses that have been with us for a long time.
It still has to be a retrovirus because retroviruses seem to have an affinity for our immune systems, *huge sigh here* and this is what is happening to us.
Someone on PR posted that Joe Dirisi tested several cfser with the Virochip. XMRV wasnt that consistent, instead HERV was. (Human Entero retrovirus) another one that turned up quite abit was HGRV (Human Gamma retrovirus).
What really really concerns me is that sooner or later everyone with cfs will evetually sucuumb to the virus attack and be diagnosed with either lymphoma or leukemia. It makes sense cos the virus hides out in the B cells and as I understand it in CD57 cells. And like many other viruses that hide out in their host cells (human papilloma - cervical cancer), (HHV8 - Kaposi) they eventually turn them cancerous.
If that is the case then XMRV is a cross species virus ( murine: from mouse) so it might not be it. It cud be too new. Of course that is not to say that it has been around all this while and just happened to be opportunistic. But it seems more likely that a virus that human being have been exposed to for a long time that MOST OF THE POPULATION have already built resistance to, is infecting us. In that case I wud look at older viruses, and viruses that have been with us for a long time.
It still has to be a retrovirus because retroviruses seem to have an affinity for our immune systems, *huge sigh here* and this is what is happening to us.
Someone on PR posted that Joe Dirisi tested several cfser with the Virochip. XMRV wasnt that consistent, instead HERV was. (Human Entero retrovirus) another one that turned up quite abit was HGRV (Human Gamma retrovirus).
What really really concerns me is that sooner or later everyone with cfs will evetually sucuumb to the virus attack and be diagnosed with either lymphoma or leukemia. It makes sense cos the virus hides out in the B cells and as I understand it in CD57 cells. And like many other viruses that hide out in their host cells (human papilloma - cervical cancer), (HHV8 - Kaposi) they eventually turn them cancerous.
Just back from my second visit with KDM, now 6 weeks into my GcMAF injections. Just a few things i thought i would mention.
- Earlier i had said that GcMAF needed to be kept frozen... that's what the nurse told me. I asked KDM about this and he said it was not the case as it will store in ambient room temperature for a couple of weeks. This makes transport a lot easier!
- I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
- He said i should know if its going to work for me after about 15 weeks on it. He said it seem to work a lot of the time on lower VDR responders too but it just takes more time.
- He said his daughter is fully recovered after her treatment on Nexavir and GcMAF. She is now back in college full time after being unwell with CFS for years.
- I asked him if it was a case that 50% of patients were doing well on GcMAF + Nexavir and he said more like 80%
- I asked if it was true that GcMAF works better in summer time when you are exposed to more sunlight but he said this was not true. He said when you go on GcMAF your Vitamin D spikes very high anyway. he said you should not take Vitamin D while using it as you will be getting too much Vitamin D which is very toxic.
Thats all i can remember right now)
- Earlier i had said that GcMAF needed to be kept frozen... that's what the nurse told me. I asked KDM about this and he said it was not the case as it will store in ambient room temperature for a couple of weeks. This makes transport a lot easier!
- I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
- He said i should know if its going to work for me after about 15 weeks on it. He said it seem to work a lot of the time on lower VDR responders too but it just takes more time.
- He said his daughter is fully recovered after her treatment on Nexavir and GcMAF. She is now back in college full time after being unwell with CFS for years.
- I asked him if it was a case that 50% of patients were doing well on GcMAF + Nexavir and he said more like 80%
- I asked if it was true that GcMAF works better in summer time when you are exposed to more sunlight but he said this was not true. He said when you go on GcMAF your Vitamin D spikes very high anyway. he said you should not take Vitamin D while using it as you will be getting too much Vitamin D which is very toxic.
Thats all i can remember right now
)
Hi Ronan
I also just wanted to say thanx a lot for sharing all of that info. Its very encouraging news knowing people are doing well on the combo treatment of Nexavir and GcMAF and especially the news about KDM's daughter being fully recovered.
Ive been on weekly injections of Hepapressin (Dr Enlanders version of Nexavir) for the past couple of months although i had a break from it for a few weeks so havent taken it consistently. I think its different to Nexavir in that it contains glutathione, magnesium, methyb12 and some other stuff in there, although im not quite sure if KDM's version has added ingredients too. Do u know? Are u also on the Nexavir aswell? I definitely notice some benefits from the Hep at certain times in the days following my injection...eg reduced inflammation, better sleep but these effects are usually only temporary unfortunately and its too expensive for me to inject more often. I cant wait to add GcMAF into the mix and just hope that i get some response from both treatments working together.
Thats very interesting about the vitamin D cos i had heard the opposite, that we need to take vit D to get the most benefits from GcMAF! I find that I have to be careful with vit D anyway as it can make me a lot more inflamed depending on my dose.
Thats good news about the GcMAF not having to be kept frozen. I guess this is from the recent Pacini et al research.
Ive got my appt with KDM on Tuesday so I will also be very interested to hear what KDM thinks about the validity of the VDR testing and the conflicting lab results from so will ask him about that next week too.
Good luck with the treatments!
All the best.
I also just wanted to say thanx a lot for sharing all of that info. Its very encouraging news knowing people are doing well on the combo treatment of Nexavir and GcMAF and especially the news about KDM's daughter being fully recovered.
Ive been on weekly injections of Hepapressin (Dr Enlanders version of Nexavir) for the past couple of months although i had a break from it for a few weeks so havent taken it consistently. I think its different to Nexavir in that it contains glutathione, magnesium, methyb12 and some other stuff in there, although im not quite sure if KDM's version has added ingredients too. Do u know? Are u also on the Nexavir aswell? I definitely notice some benefits from the Hep at certain times in the days following my injection...eg reduced inflammation, better sleep but these effects are usually only temporary unfortunately and its too expensive for me to inject more often. I cant wait to add GcMAF into the mix and just hope that i get some response from both treatments working together.
Thats very interesting about the vitamin D cos i had heard the opposite, that we need to take vit D to get the most benefits from GcMAF! I find that I have to be careful with vit D anyway as it can make me a lot more inflamed depending on my dose.
Thats good news about the GcMAF not having to be kept frozen. I guess this is from the recent Pacini et al research.
Ive got my appt with KDM on Tuesday so I will also be very interested to hear what KDM thinks about the validity of the VDR testing and the conflicting lab results from so will ask him about that next week too.
Good luck with the treatments!
All the best.
Just back from my second visit with KDM, now 6 weeks into my GcMAF injections. Just a few things i thought i would mention.
- Earlier i had said that GcMAF needed to be kept frozen... that's what the nurse told me. I asked KDM about this and he said it was not the case as it will store in ambient room temperature for a couple of weeks. This makes transport a lot easier!
- I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
- He said i should know if its going to work for me after about 15 weeks on it. He said it seem to work a lot of the time on lower VDR responders too but it just takes more time.
- He said his daughter is fully recovered after her treatment on Nexavir and GcMAF. She is now back in college full time after being unwell with CFS for years.
- I asked him if it was a case that 50% of patients were doing well on GcMAF + Nexavir and he said more like 80%
- I asked if it was true that GcMAF works better in summer time when you are exposed to more sunlight but he said this was not true. He said when you go on GcMAF your Vitamin D spikes very high anyway. he said you should not take Vitamin D while using it as you will be getting too much Vitamin D which is very toxic.
Thats all i can remember right now)
- Earlier i had said that GcMAF needed to be kept frozen... that's what the nurse told me. I asked KDM about this and he said it was not the case as it will store in ambient room temperature for a couple of weeks. This makes transport a lot easier!
- I got a copy of my VDR Genotyping results and they were not as bad as i had first thought. According to RED Labs my BSM1 is "Moderate to Low" and my FOK1 is "Moderate Responder". Initially i believed i was a low responder on both so i am a bit more hopeful now.
- He said i should know if its going to work for me after about 15 weeks on it. He said it seem to work a lot of the time on lower VDR responders too but it just takes more time.
- He said his daughter is fully recovered after her treatment on Nexavir and GcMAF. She is now back in college full time after being unwell with CFS for years.
- I asked him if it was a case that 50% of patients were doing well on GcMAF + Nexavir and he said more like 80%
- I asked if it was true that GcMAF works better in summer time when you are exposed to more sunlight but he said this was not true. He said when you go on GcMAF your Vitamin D spikes very high anyway. he said you should not take Vitamin D while using it as you will be getting too much Vitamin D which is very toxic.
Thats all i can remember right now
)
Hi Undcvr,
With all due respect, I would like to ask you, if possible, to write the complete words in your messages...Many of us are non-english-speakers, and struggle everyday to manage in this language.
I would really appreciate your consideration with this matter. Think that this forum is read internationally.
Thanks in advance,
Sergio
With all due respect, I would like to ask you, if possible, to write the complete words in your messages...Many of us are non-english-speakers, and struggle everyday to manage in this language.
I would really appreciate your consideration with this matter. Think that this forum is read internationally.
Thanks in advance,
Sergio
Hi Ronan,
WOW!, this is an "injection of hope" for most of us! Personally I am visiting KDM on the 24th, so you could imagine how welcome is your message!
How are you doing as for now? Could you tell already?
Thanks for your report, and wishing you the best!
Sergio
WOW!, this is an "injection of hope" for most of us! Personally I am visiting KDM on the 24th, so you could imagine how welcome is your message!
How are you doing as for now? Could you tell already?
Thanks for your report, and wishing you the best!
Sergio
- Messages
- 1,727
- Likes
- 754
Hi
can anyone tell me what they are paying for hepapressin or nexavir.. since they are complementary therapies for the gcmaf?
thanks!
can anyone tell me what they are paying for hepapressin or nexavir.. since they are complementary therapies for the gcmaf?
thanks!
Hi aquariusgirl,
I am not taking Nexavir yet but have checked out the price people are paying--about $450 per month. It is the most expensive part of the protocol. I did hear of one person who is getting Medicare to pay for it, but that may depend on your drug plan.
Sushi
I am not taking Nexavir yet but have checked out the price people are paying--about $450 per month. It is the most expensive part of the protocol. I did hear of one person who is getting Medicare to pay for it, but that may depend on your drug plan.
Sushi
- Messages
- 1,727
- Likes
- 754
Someone just posted about Medicare pulling coverage for it. It's on the blog site here.
Another person said it may be covered for acne.
I called my insurance company about it ages ago.. and they were completely clueless.
Thanks for the info.
Another person said it may be covered for acne.
I called my insurance company about it ages ago.. and they were completely clueless.
Thanks for the info.
- Messages
- 368
- Likes
- 579
here is a summary of info on nexavir. it is a phoenix rising article:
http://aboutmecfs.org/Trt/TrtNexavir.aspx
in it, it says this (below) and much more, including a link to the company that makes it:
Nexavir Is a prescription drug produced from pig liver that is believed to have anti-inflammatory and anti-viral properties. Favorable responses to NEXAVIR in patients with skin diseases (acne vulgaris, herpes zoster, "poison ivy" dermatitis, pityriasis rosea, seborrheic dermatitis, urticaria and eczema) and severe sunburn have been reported. One study suggested in-vitro effectiveness against the HHV-6 virus. Nexavir, formerly kutapressin, is available from www.nexcopharma.com/.
http://aboutmecfs.org/Trt/TrtNexavir.aspx
in it, it says this (below) and much more, including a link to the company that makes it:
Nexavir Is a prescription drug produced from pig liver that is believed to have anti-inflammatory and anti-viral properties. Favorable responses to NEXAVIR in patients with skin diseases (acne vulgaris, herpes zoster, "poison ivy" dermatitis, pityriasis rosea, seborrheic dermatitis, urticaria and eczema) and severe sunburn have been reported. One study suggested in-vitro effectiveness against the HHV-6 virus. Nexavir, formerly kutapressin, is available from www.nexcopharma.com/.
- Messages
- 368
- Likes
- 579
i see my doctor tomorrow. i want to tell him about GcMAF and de meirleir. can anyone tell me de meirleir's contact info and/or his bio ASAP?
Address: Himmunitas
De Tyraslaan 111
1120 Neder-Over-Heembeek (Brussel)
Belgium
Telephone: +32 (0)2 266 87 40
Email: info at ehmb dot be
http://www.mecvs.net/module-ME_CVS_docs-viewpub-tid-4-pid-1.html
Translated from Dutch by Google Chrome:
Prof. Dr. Kenny De Meirleir
Internist
Himmunitas association , Neder-Over-Heembeek (Brussels), Belgium
Kenny De Meirleir is Professor of Physiology, Pathophysiology & Medicine, Internal Medicine & Cardiology at the VUB. He is also director and internist / cardiologist affiliated with ME / CFS clinic Himmunitas, also in Brussels. From 2005 to 2008, De Meirleir also Clinical Professor of Pathology at the University of Nevada Medical School in Reno (USA) where he worked closely with the discoverers of the XMRV retrovirus in ME / CFS. Kenny is (co) authored several hundred scientific peer reviewed publications on CFS and his work has received several awards. For years he was editor of the Journal of Chronic Fatigue Syndrome , collaborated on several books and is chairman of the Scientific Panel of the European think tank ESME. (Source: Congress 25 years ME / CFS )
Features : Professor of physiology, pathophysiology and medicine, internal medicine and cardiology
Specialty : disruption and immune activation, viral and bacterial infections, darmdysbiose, oxidative stress
Sushi
De Tyraslaan 111
1120 Neder-Over-Heembeek (Brussel)
Belgium
Telephone: +32 (0)2 266 87 40
Email: info at ehmb dot be
http://www.mecvs.net/module-ME_CVS_docs-viewpub-tid-4-pid-1.html
Translated from Dutch by Google Chrome:
Prof. Dr. Kenny De Meirleir
Internist
Himmunitas association , Neder-Over-Heembeek (Brussels), Belgium
Kenny De Meirleir is Professor of Physiology, Pathophysiology & Medicine, Internal Medicine & Cardiology at the VUB. He is also director and internist / cardiologist affiliated with ME / CFS clinic Himmunitas, also in Brussels. From 2005 to 2008, De Meirleir also Clinical Professor of Pathology at the University of Nevada Medical School in Reno (USA) where he worked closely with the discoverers of the XMRV retrovirus in ME / CFS. Kenny is (co) authored several hundred scientific peer reviewed publications on CFS and his work has received several awards. For years he was editor of the Journal of Chronic Fatigue Syndrome , collaborated on several books and is chairman of the Scientific Panel of the European think tank ESME. (Source: Congress 25 years ME / CFS )
Features : Professor of physiology, pathophysiology and medicine, internal medicine and cardiology
Specialty : disruption and immune activation, viral and bacterial infections, darmdysbiose, oxidative stress
Sushi
C
KDM also co-founded Red Labs Reno