Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 I just posted this on the list and I thought some of you would be interested. Read down the thread to get the gist of the post! Bill ----- Forwarded Message ---- From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Cc: Sent: Tue, August 24, 2010 9:38:12 PM Subject: Re: Imunovir & Dr Goldberg Kay sorry you can not get posted on the list but I CC'ed the list so everyone is in the loop. followers read down the post in that Kay and I have been conversing off list. No Dr K does not see children but she is an integral part of the protocol we are on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a week with these folks). She is a board member on the foundation and brought Imunovir among other aspects of this treatment to the table. Her focus is on research and does not see children, in in her words " I have no experience with these meds effects on kids and I will not go there any time soon " . She can't. Her focus is finding a cure to neuroimmune disorders and right now her focus is on adults. My son is not her patient, she sent us to Dr G. It is helpful having a scientist in the family that is focused on my sons illness even if it is a related illness and I will share what I can. I will say the she is very excited about the new retrovirus and sits on the committee that is reviewing the national blood supply for the NIH, in doing so is very connected with all of the current research. I asked her the time line and she responded that we will know if this is a root cause in the next 6-9 months. " IF " and this is a VERY big IF, this new family of virus is a root cause 2011 may be a very big year in the world of Autism I will ask her if any of her associates are focused on this facet of the illness and see children but do not get excited. When I worked to get this out on the SCIA (No longer working with them) She told me I would drive parents crazy in that there is " NO " money for immune research and few Doctors that truly understand immune and neuroinflammation and Autism. Scientists go where the dollars are. Look for the WPI and CSF to find us a cure! Call Autism speaks and give them an ear full, We need their bucks in the correct sector! Bill ________________________________ From: Kay <kp_mlist@...> Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 6:01:27 PM Subject: Re: Imunovir & Dr Goldberg Got it. Thanks Bill. Does she see kids with the Autism label in clinical practice? We live in Northern CA so is a big trek to goto Florida. Are there other immunologist perhaps in the west coast that are close to her research? We asked the folks at Stanford but doesn't look like they buy into the immune connection just yet. Thanks, ________________________________ From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Sent: Tue, August 24, 2010 2:32:00 PM Subject: Re: Imunovir & Dr Goldberg Kay I believe she addresses that. She is not only a clinician and researcher but also director of the U of M immunology lab. She uses NK cell counts and NK cell function as a surrogate for cytotoxic T cell function. It is in the immune panels that she runs. I do know she has ID'ed several markers that she can use to determine the severity of CSF in her patients but I am not up on those and I do not believe that any other immunologist is using these markers. Primarily research driven. ________________________________ From: Kay <kp_mlist@...> klimas_bill@... Sent: Tue, August 24, 2010 4:58:24 PM Subject: Re: Imunovir & Dr Goldberg Bill, This is interesting to know. My posts don't make it to the board so am writing off the list. Are there any biomarkers for low granzyme & perforin content or how do we ascertain that the cells are poorly functioning? ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 1:18:33 PM Subject: Re: Imunovir & Dr Goldberg Dr Klimas' explanation of the function of imunovir In my experience imunovir increases NK cell function by increasing the amount of granzymes/cell; in effect improving the ability of the cell to kill virally infected targets. I usually see elevated NK cell numbers when the function is poor - a compensation for poor function, making increasing number of cells to do the job. Its not all bad to have compensatory mechanisms, it is worse when there is poor function and a low number. In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell function is poor because there is a low granzyme and perforin content of the cell. This is also true of cytotoxic T cells, the other antiviral cell and possibly the more important of the two - its function is harder to measure, so we have used NK cell function as a surrogate for cytotoxic T cell function, after proving that the granzyme and perforin content of both NK and of Cytotoxic T cells is low. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 3:31:59 PM Subject: Re: Imunovir & Dr Goldberg Thanks, Bill. Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 10:57:34 AM Subject: Re: Imunovir & Dr Goldberg Yes according to Dr K. I will bring down high NK . I will drop her a note and ask her to explain then forward it back to the list. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 1:26:27 PM Subject: Re: Imunovir & Dr Goldberg Hi, Bill. Another question about Imunovir...does it function to normalize NK cells whether they're high or low? Thanks! Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 5:37:44 AM Subject: Re: Imunovir & Dr Goldberg Sorry if i was not clear. We are on and have been on Acyclovir continuously for several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir or Acyclovir. These three block vital replication. Imunovir is an Immune modulator that increases NK cell function and counts. In that it supports the immune systems effectiveness it acts as an antiviral. Dr Klimas explained after several months on Imunovir the immune system hits a plateau. To get additional benefit you need to take a hiatus - (Dr K does a one month break after six months - Dr G does a two week break after three months) and when you restart it you can boost the immune system another notch.. ________________________________ From: " Googahly@... " <Googahly@...> Sent: Tue, August 24, 2010 12:00:59 AM Subject: Re: Imunovir & Dr Goldberg Do you take another antiviral during the hiatus? Gaylen In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time, klimas_bill@... writes: yes, We were on a pulse dosage such as yours for six months (Dr Klimas' recommendation) and the effects hit a plateau. We then took a two month hiatus and restarted several months ago with good gains. We do five tablets a day - week one and three tables a day - week two, week ends off. Uric acid is generally slightly high 6.5 +/- on monthly blood work with no negative side effects ________________________________ From: Fund <_susan_fund@..._ (mailto:susan_fund@...) > _ _ (mailto: ) Sent: Mon, August 16, 2010 2:27:48 PM Subject: Imunovir & Dr Goldberg My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc follows Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day Mon thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon thru Fri with none on Sat and Sun.You rotate week one and week two for 2 months and then take a month off. Dr Cheney says that if you dose it consistently the Imunovir will stop working so you need to pulse it and change the dose to trick the immune system into kicking in. Does Dr Goldberg recommend changing the dose or keeping a constant dose? Has anyone who has used Imunovir consistently found it to stop working? Thanks! [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 2010 Report Share Posted August 24, 2010 Hi Newbies here and glad to see conversations on Immunovir. My son is 14.5kg and is currently on his second week of immunovir. Unfortunately as prescribed, he is on 500mg per day in 3 doses for the past two weeks, and I wasn't told to vary the dosage weekly and neither pauses in between. Is it too late to go into into Dr. Cheney's protocal (in terms of varying the dosage everyweek and pulse it on the weekend and on the 3rd month)? The part of the world i'm from, DAN is scarce and I doubt there is any experts who wants to work on ASD children and so really hope you could advise. Let me know this plan of mine makes sense: Month 1: Week 1 - Week 2: 500mg per day continuous (this has happened and could't be undone) Week 3: 750mg per day, stop over the weekend Week 4: 500mg per day, stop over the weekend Month 2: week 1: 750mg per day, Week 2: 500mg per day Week 3: repeat week 1 Week 4: repeat week 2 Pause for 1 month and repeat the above. My son is on Rx Methisoprinol liquid, 50mg/ml. And I haven't done any other antiviral protocol. Looking forward to your reply. Shan > > I just posted this on the list and I thought some of you would be > interested. Read down the thread to get the gist of the post! > Bill > > > > ----- Forwarded Message ---- > From: Bill klimas <klimas_bill@...> > Kay <kp_mlist@...> > Cc: > Sent: Tue, August 24, 2010 9:38:12 PM > Subject: Re: Imunovir & Dr Goldberg > > > Kay sorry you can not get posted on the list but I CC'ed the list so > everyone is in the loop. followers read down the post in that Kay and I > have been conversing off list. > No Dr K does not see children but she is an integral part of the protocol we are > on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a > week with these folks). She is a board member on the foundation and > brought Imunovir among other aspects of this treatment to the table. Her focus > is on research and does not see children, in in her words " I have no experience > with these meds effects on kids and I will not go there any time soon " . She > can't. Her focus is finding a cure to neuroimmune disorders and right now her > focus is on adults. My son is not her patient, she sent us to Dr G. It is > helpful having a scientist in the family that is focused on my sons illness even > if it is a related illness and I will share what I can. > > I will say the she is very excited about the new retrovirus and sits on the > committee that is reviewing the national blood supply for the NIH, in doing so > is very connected with all of the current research. I asked her the time line > and she responded that we will know if this is a root cause in the next 6-9 > months. " IF " and this is a VERY big IF, this new family of virus is a root cause > 2011 may be a very big year in the world of Autism > > I will ask her if any of her associates are focused on this facet of the illness > and see children but do not get excited. When I worked to get this out on the > SCIA (No longer working with them) She told me I would drive parents crazy in > that there is " NO " money for immune research and few Doctors that truly > understand immune and neuroinflammation and Autism. Scientists go where the > dollars are. Look for the WPI and CSF to find us a cure! > > Call Autism speaks and give them an ear full, We need their bucks in the correct > sector! > > Bill > > > > > ________________________________ > From: Kay <kp_mlist@...> > Bill klimas <klimas_bill@...> > Sent: Tue, August 24, 2010 6:01:27 PM > Subject: Re: Imunovir & Dr Goldberg > > > Got it. Thanks Bill. > Does she see kids with the Autism label in clinical practice? We live in > Northern CA so is a big trek to goto Florida. > Are there other immunologist perhaps in the west coast that are close to her > research? We asked the folks at Stanford but doesn't look like they buy into the > immune connection just yet. > > Thanks, > > > > ________________________________ > From: Bill klimas <klimas_bill@...> > Kay <kp_mlist@...> > Sent: Tue, August 24, 2010 2:32:00 PM > Subject: Re: Imunovir & Dr Goldberg > > > Kay > I believe she addresses that. She is not only a clinician and researcher but > also director of the U of M immunology lab. She uses NK cell counts and NK cell > function as a surrogate for cytotoxic T cell function. It is in the immune > panels that she runs. I do know she has ID'ed several markers that she can use > to determine the severity of CSF in her patients but I am not up on those and I > do not believe that any other immunologist is using these markers. Primarily > research driven. > > > > > > ________________________________ > From: Kay <kp_mlist@...> > klimas_bill@... > Sent: Tue, August 24, 2010 4:58:24 PM > Subject: Re: Imunovir & Dr Goldberg > > > Bill, This is interesting to know. My posts don't make it to the board so > am writing off the list. > Are there any biomarkers for low granzyme & perforin content or how do we > ascertain that the cells are poorly functioning? > > > > ________________________________ > From: Bill klimas <klimas_bill@...> > > Sent: Tue, August 24, 2010 1:18:33 PM > Subject: Re: Imunovir & Dr Goldberg > > > Dr Klimas' explanation of the function of imunovir > > In my experience imunovir increases NK cell function by increasing the amount of > > granzymes/cell; in effect improving the ability of the cell to kill virally > infected targets. I usually see elevated NK cell numbers when the function is > poor - a compensation for poor function, making increasing number of cells to > do > > the job. Its not all bad to have compensatory mechanisms, it is worse when > there is poor function and a low number. > > In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell > function is poor because there is a low granzyme and perforin content of the > cell. This is also true of cytotoxic T cells, the other antiviral cell and > possibly the more important of the two - its function is harder to measure, so > we have used NK cell function as a surrogate for cytotoxic T cell function, > after proving that the granzyme and perforin content of both NK and of > Cytotoxic T cells is low. > > ________________________________ > From: Robyn & Greg Coggins <rngcoggs@...> > > Sent: Tue, August 24, 2010 3:31:59 PM > Subject: Re: Imunovir & Dr Goldberg > > Thanks, Bill. > > Robyn > > ________________________________ > From: Bill klimas <klimas_bill@...> > > Sent: Tue, August 24, 2010 10:57:34 AM > Subject: Re: Imunovir & Dr Goldberg > > Yes according to Dr K. I will bring down high NK . I will drop her a note and > ask her to explain then forward it back to the list. > > ________________________________ > From: Robyn & Greg Coggins <rngcoggs@...> > > Sent: Tue, August 24, 2010 1:26:27 PM > Subject: Re: Imunovir & Dr Goldberg > > Hi, Bill. > > Another question about Imunovir...does it function to normalize NK cells whether > > > they're high or low? > > Thanks! > > Robyn > > ________________________________ > From: Bill klimas <klimas_bill@...> > > Sent: Tue, August 24, 2010 5:37:44 AM > Subject: Re: Imunovir & Dr Goldberg > > Sorry if i was not clear. We are on and have been on Acyclovir continuously for > several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir > > > or Acyclovir. These three block vital replication. Imunovir is an Immune > modulator that increases NK cell function and counts. In that it supports the > immune systems effectiveness it acts as an antiviral. Dr Klimas explained after > > > several months on Imunovir the immune system hits a plateau. To get additional > benefit you need to take a hiatus - (Dr K does a one month break after six > months - Dr G does a two week break after three months) and when you restart it > you can boost the immune system another notch.. > > ________________________________ > From: " Googahly@... " <Googahly@...> > > Sent: Tue, August 24, 2010 12:00:59 AM > Subject: Re: Imunovir & Dr Goldberg > > Do you take another antiviral during the hiatus? > Gaylen > > In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time, > klimas_bill@... writes: > > yes, We were on a pulse dosage such as yours for six months (Dr Klimas' > recommendation) and the effects hit a plateau. We then took a two month > hiatus > and restarted several months ago with good gains. We do five tablets a day > - > week one and three tables a day - week two, week ends off. Uric acid is > generally slightly high 6.5 +/- on monthly blood work with no negative > side > effects > > ________________________________ > From: Fund <_susan_fund@..._ (mailto:susan_fund@...) > > _ _ (mailto: ) > Sent: Mon, August 16, 2010 2:27:48 PM > Subject: Imunovir & Dr Goldberg > > My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc > follows > Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day > Mon > thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon > thru Fri > with none on Sat and Sun.You rotate week one and week two for 2 months and > then > take a month off. Dr Cheney says that if you dose it consistently the > Imunovir > will stop working so you need to pulse it and change the dose to trick the > immune system into kicking in. > > Does Dr Goldberg recommend changing the dose or keeping a constant dose? > Has > anyone who has used Imunovir consistently found it to stop working? > > Thanks! > > > [Non-text portions of this message have been removed] > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Thank you Bill for this. I am waaaaaaay behind on my emails so I am thankful I did not miss this. Monday was a HUGE day and unfortunately, I had little time to absorb it all. Oh, I forgot, there is a mother with a 29 year old adult ASD son. This kid is in bad shape. He does well on Motrin but she does not want to give it to him very often. I asked her to contact you but I don't remember what you do to control inflammation. Do not you use aspirn/ibuprofen for your son. I am thinking about doing this for my son as well. Thank you.  All the best,  Jill Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA email: sjillboyer@..., phone: 614-538-8986  From: Bill klimas <klimas_bill@...> Subject: Fw: Imunovir & Dr Goldberg mb12 valtrex Cc: Date: Tuesday, August 24, 2010, 9:46 PM  I just posted this on the list and I thought some of you would be interested. Read down the thread to get the gist of the post! Bill ----- Forwarded Message ---- From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Cc: Sent: Tue, August 24, 2010 9:38:12 PM Subject: Re: Imunovir & Dr Goldberg Kay sorry you can not get posted on the list but I CC'ed the list so everyone is in the loop. followers read down the post in that Kay and I have been conversing off list. No Dr K does not see children but she is an integral part of the protocol we are on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a week with these folks). She is a board member on the foundation and brought Imunovir among other aspects of this treatment to the table. Her focus is on research and does not see children, in in her words " I have no experience with these meds effects on kids and I will not go there any time soon " . She can't. Her focus is finding a cure to neuroimmune disorders and right now her focus is on adults. My son is not her patient, she sent us to Dr G. It is helpful having a scientist in the family that is focused on my sons illness even if it is a related illness and I will share what I can. I will say the she is very excited about the new retrovirus and sits on the committee that is reviewing the national blood supply for the NIH, in doing so is very connected with all of the current research. I asked her the time line and she responded that we will know if this is a root cause in the next 6-9 months. " IF " and this is a VERY big IF, this new family of virus is a root cause 2011 may be a very big year in the world of Autism I will ask her if any of her associates are focused on this facet of the illness and see children but do not get excited. When I worked to get this out on the SCIA (No longer working with them) She told me I would drive parents crazy in that there is " NO " money for immune research and few Doctors that truly understand immune and neuroinflammation and Autism. Scientists go where the dollars are. Look for the WPI and CSF to find us a cure! Call Autism speaks and give them an ear full, We need their bucks in the correct sector! Bill ________________________________ From: Kay <kp_mlist@...> Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 6:01:27 PM Subject: Re: Imunovir & Dr Goldberg Got it. Thanks Bill. Does she see kids with the Autism label in clinical practice? We live in Northern CA so is a big trek to goto Florida. Are there other immunologist perhaps in the west coast that are close to her research? We asked the folks at Stanford but doesn't look like they buy into the immune connection just yet. Thanks, ________________________________ From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Sent: Tue, August 24, 2010 2:32:00 PM Subject: Re: Imunovir & Dr Goldberg Kay I believe she addresses that. She is not only a clinician and researcher but also director of the U of M immunology lab. She uses NK cell counts and NK cell function as a surrogate for cytotoxic T cell function. It is in the immune panels that she runs. I do know she has ID'ed several markers that she can use to determine the severity of CSF in her patients but I am not up on those and I do not believe that any other immunologist is using these markers. Primarily research driven. ________________________________ From: Kay <kp_mlist@...> klimas_bill@... Sent: Tue, August 24, 2010 4:58:24 PM Subject: Re: Imunovir & Dr Goldberg Bill, This is interesting to know. My posts don't make it to the board so am writing off the list. Are there any biomarkers for low granzyme & perforin content or how do we ascertain that the cells are poorly functioning? ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 1:18:33 PM Subject: Re: Imunovir & Dr Goldberg Dr Klimas' explanation of the function of imunovir In my experience imunovir increases NK cell function by increasing the amount of granzymes/cell; in effect improving the ability of the cell to kill virally infected targets. I usually see elevated NK cell numbers when the function is poor - a compensation for poor function, making increasing number of cells to do the job. Its not all bad to have compensatory mechanisms, it is worse when there is poor function and a low number. In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell function is poor because there is a low granzyme and perforin content of the cell. This is also true of cytotoxic T cells, the other antiviral cell and possibly the more important of the two - its function is harder to measure, so we have used NK cell function as a surrogate for cytotoxic T cell function, after proving that the granzyme and perforin content of both NK and of Cytotoxic T cells is low. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 3:31:59 PM Subject: Re: Imunovir & Dr Goldberg Thanks, Bill. Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 10:57:34 AM Subject: Re: Imunovir & Dr Goldberg Yes according to Dr K. I will bring down high NK . I will drop her a note and ask her to explain then forward it back to the list. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 1:26:27 PM Subject: Re: Imunovir & Dr Goldberg Hi, Bill. Another question about Imunovir...does it function to normalize NK cells whether they're high or low? Thanks! Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 5:37:44 AM Subject: Re: Imunovir & Dr Goldberg Sorry if i was not clear. We are on and have been on Acyclovir continuously for several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir or Acyclovir. These three block vital replication. Imunovir is an Immune modulator that increases NK cell function and counts. In that it supports the immune systems effectiveness it acts as an antiviral. Dr Klimas explained after several months on Imunovir the immune system hits a plateau. To get additional benefit you need to take a hiatus - (Dr K does a one month break after six months - Dr G does a two week break after three months) and when you restart it you can boost the immune system another notch.. ________________________________ From: " Googahly@... " <Googahly@...> Sent: Tue, August 24, 2010 12:00:59 AM Subject: Re: Imunovir & Dr Goldberg Do you take another antiviral during the hiatus? Gaylen In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time, klimas_bill@... writes: yes, We were on a pulse dosage such as yours for six months (Dr Klimas' recommendation) and the effects hit a plateau. We then took a two month hiatus and restarted several months ago with good gains. We do five tablets a day - week one and three tables a day - week two, week ends off. Uric acid is generally slightly high 6.5 +/- on monthly blood work with no negative side effects ________________________________ From: Fund <_susan_fund@..._ (mailto:susan_fund@...) > _ _ (mailto: ) Sent: Mon, August 16, 2010 2:27:48 PM Subject: Imunovir & Dr Goldberg My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc follows Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day Mon thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon thru Fri with none on Sat and Sun.You rotate week one and week two for 2 months and then take a month off. Dr Cheney says that if you dose it consistently the Imunovir will stop working so you need to pulse it and change the dose to trick the immune system into kicking in. Does Dr Goldberg recommend changing the dose or keeping a constant dose? Has anyone who has used Imunovir consistently found it to stop working? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 I use ibuprofen but pretty seldom. I often see him get agitated after high stress periods like the first day of school. These kids react much like CFS folks in that stress can also trigger inflammation. Ibuprofen seems to be effective at these times. I also direct him to calm him self. He has learned that his agitation is unhealthy and most times he will take his pill then go to his room to lie down for an short while (generally in a dark room) and he gets back up back on base.This strategy came from the days we wold have melt downs. They are over but stress in particular can trigger near melt episodes. ________________________________ From: Jill Boyer <sjillboyer@...> Sent: Thu, August 26, 2010 11:12:56 AM Subject: Re: Fw: Imunovir & Dr Goldberg Thank you Bill for this. I am waaaaaaay behind on my emails so I am thankful I did not miss this. Monday was a HUGE day and unfortunately, I had little time to absorb it all. Oh, I forgot, there is a mother with a 29 year old adult ASD son. This kid is in bad shape. He does well on Motrin but she does not want to give it to him very often. I asked her to contact you but I don't remember what you do to control inflammation. Do not you use aspirn/ibuprofen for your son. I am thinking about doing this for my son as well. Thank you. All the best, Jill Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA email: sjillboyer@..., phone: 614-538-8986 From: Bill klimas <klimas_bill@...> Subject: Fw: Imunovir & Dr Goldberg mb12 valtrex Cc: Date: Tuesday, August 24, 2010, 9:46 PM I just posted this on the list and I thought some of you would be interested. Read down the thread to get the gist of the post! Bill ----- Forwarded Message ---- From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Cc: Sent: Tue, August 24, 2010 9:38:12 PM Subject: Re: Imunovir & Dr Goldberg Kay sorry you can not get posted on the list but I CC'ed the list so everyone is in the loop. followers read down the post in that Kay and I have been conversing off list. No Dr K does not see children but she is an integral part of the protocol we are on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a week with these folks). She is a board member on the foundation and brought Imunovir among other aspects of this treatment to the table. Her focus is on research and does not see children, in in her words " I have no experience with these meds effects on kids and I will not go there any time soon " . She can't. Her focus is finding a cure to neuroimmune disorders and right now her focus is on adults. My son is not her patient, she sent us to Dr G. It is helpful having a scientist in the family that is focused on my sons illness even if it is a related illness and I will share what I can. I will say the she is very excited about the new retrovirus and sits on the committee that is reviewing the national blood supply for the NIH, in doing so is very connected with all of the current research. I asked her the time line and she responded that we will know if this is a root cause in the next 6-9 months. " IF " and this is a VERY big IF, this new family of virus is a root cause 2011 may be a very big year in the world of Autism I will ask her if any of her associates are focused on this facet of the illness and see children but do not get excited. When I worked to get this out on the SCIA (No longer working with them) She told me I would drive parents crazy in that there is " NO " money for immune research and few Doctors that truly understand immune and neuroinflammation and Autism. Scientists go where the dollars are. Look for the WPI and CSF to find us a cure! Call Autism speaks and give them an ear full, We need their bucks in the correct sector! Bill ________________________________ From: Kay <kp_mlist@...> Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 6:01:27 PM Subject: Re: Imunovir & Dr Goldberg Got it. Thanks Bill. Does she see kids with the Autism label in clinical practice? We live in Northern CA so is a big trek to goto Florida. Are there other immunologist perhaps in the west coast that are close to her research? We asked the folks at Stanford but doesn't look like they buy into the immune connection just yet. Thanks, ________________________________ From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Sent: Tue, August 24, 2010 2:32:00 PM Subject: Re: Imunovir & Dr Goldberg Kay I believe she addresses that. She is not only a clinician and researcher but also director of the U of M immunology lab. She uses NK cell counts and NK cell function as a surrogate for cytotoxic T cell function. It is in the immune panels that she runs. I do know she has ID'ed several markers that she can use to determine the severity of CSF in her patients but I am not up on those and I do not believe that any other immunologist is using these markers. Primarily research driven. ________________________________ From: Kay <kp_mlist@...> klimas_bill@... Sent: Tue, August 24, 2010 4:58:24 PM Subject: Re: Imunovir & Dr Goldberg Bill, This is interesting to know. My posts don't make it to the board so am writing off the list. Are there any biomarkers for low granzyme & perforin content or how do we ascertain that the cells are poorly functioning? ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 1:18:33 PM Subject: Re: Imunovir & Dr Goldberg Dr Klimas' explanation of the function of imunovir In my experience imunovir increases NK cell function by increasing the amount of granzymes/cell; in effect improving the ability of the cell to kill virally infected targets. I usually see elevated NK cell numbers when the function is poor - a compensation for poor function, making increasing number of cells to do the job. Its not all bad to have compensatory mechanisms, it is worse when there is poor function and a low number. In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell function is poor because there is a low granzyme and perforin content of the cell. This is also true of cytotoxic T cells, the other antiviral cell and possibly the more important of the two - its function is harder to measure, so we have used NK cell function as a surrogate for cytotoxic T cell function, after proving that the granzyme and perforin content of both NK and of Cytotoxic T cells is low. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 3:31:59 PM Subject: Re: Imunovir & Dr Goldberg Thanks, Bill. Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 10:57:34 AM Subject: Re: Imunovir & Dr Goldberg Yes according to Dr K. I will bring down high NK . I will drop her a note and ask her to explain then forward it back to the list. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 1:26:27 PM Subject: Re: Imunovir & Dr Goldberg Hi, Bill. Another question about Imunovir...does it function to normalize NK cells whether they're high or low? Thanks! Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 5:37:44 AM Subject: Re: Imunovir & Dr Goldberg Sorry if i was not clear. We are on and have been on Acyclovir continuously for several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir or Acyclovir. These three block vital replication. Imunovir is an Immune modulator that increases NK cell function and counts. In that it supports the immune systems effectiveness it acts as an antiviral. Dr Klimas explained after several months on Imunovir the immune system hits a plateau. To get additional benefit you need to take a hiatus - (Dr K does a one month break after six months - Dr G does a two week break after three months) and when you restart it you can boost the immune system another notch.. ________________________________ From: " Googahly@... " <Googahly@...> Sent: Tue, August 24, 2010 12:00:59 AM Subject: Re: Imunovir & Dr Goldberg Do you take another antiviral during the hiatus? Gaylen In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time, klimas_bill@... writes: yes, We were on a pulse dosage such as yours for six months (Dr Klimas' recommendation) and the effects hit a plateau. We then took a two month hiatus and restarted several months ago with good gains. We do five tablets a day - week one and three tables a day - week two, week ends off. Uric acid is generally slightly high 6.5 +/- on monthly blood work with no negative side effects ________________________________ From: Fund <_susan_fund@..._ (mailto:susan_fund@...) > _ _ (mailto: ) Sent: Mon, August 16, 2010 2:27:48 PM Subject: Imunovir & Dr Goldberg My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc follows Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day Mon thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon thru Fri with none on Sat and Sun.You rotate week one and week two for 2 months and then take a month off. Dr Cheney says that if you dose it consistently the Imunovir will stop working so you need to pulse it and change the dose to trick the immune system into kicking in. Does Dr Goldberg recommend changing the dose or keeping a constant dose? Has anyone who has used Imunovir consistently found it to stop working? Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 26, 2010 Report Share Posted August 26, 2010 Moderator I forwarded this by mistake as well so please kill the thread. Bill K ________________________________ From: Bill klimas <klimas_bill@...> Sent: Thu, August 26, 2010 11:40:30 AM Subject: Re: Fw: Imunovir & Dr Goldberg I use ibuprofen but pretty seldom. I often see him get agitated after high stress periods like the first day of school. These kids react much like CFS folks in that stress can also trigger inflammation. Ibuprofen seems to be effective at these times. I also direct him to calm him self. He has learned that his agitation is unhealthy and most times he will take his pill then go to his room to lie down for an short while (generally in a dark room) and he gets back up back on base.This strategy came from the days we wold have melt downs. They are over but stress in particular can trigger near melt episodes. ________________________________ From: Jill Boyer <sjillboyer@...> Sent: Thu, August 26, 2010 11:12:56 AM Subject: Re: Fw: Imunovir & Dr Goldberg Thank you Bill for this. I am waaaaaaay behind on my emails so I am thankful I did not miss this. Monday was a HUGE day and unfortunately, I had little time to absorb it all. Oh, I forgot, there is a mother with a 29 year old adult ASD son. This kid is in bad shape. He does well on Motrin but she does not want to give it to him very often. I asked her to contact you but I don't remember what you do to control inflammation. Do not you use aspirn/ibuprofen for your son. I am thinking about doing this for my son as well. Thank you. All the best, Jill Jill Boyer, 5544 Glasgow Place, Columbus, OH 43235, USA email: sjillboyer@..., phone: 614-538-8986 From: Bill klimas <klimas_bill@...> Subject: Fw: Imunovir & Dr Goldberg mb12 valtrex Cc: Date: Tuesday, August 24, 2010, 9:46 PM I just posted this on the list and I thought some of you would be interested. Read down the thread to get the gist of the post! Bill ----- Forwarded Message ---- From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Cc: Sent: Tue, August 24, 2010 9:38:12 PM Subject: Re: Imunovir & Dr Goldberg Kay sorry you can not get posted on the list but I CC'ed the list so everyone is in the loop. followers read down the post in that Kay and I have been conversing off list. No Dr K does not see children but she is an integral part of the protocol we are on. No Dr Klimas is focused on CFS and Gulf War adults (She works 120+ hours a week with these folks). She is a board member on the foundation and brought Imunovir among other aspects of this treatment to the table. Her focus is on research and does not see children, in in her words " I have no experience with these meds effects on kids and I will not go there any time soon " . She can't. Her focus is finding a cure to neuroimmune disorders and right now her focus is on adults. My son is not her patient, she sent us to Dr G. It is helpful having a scientist in the family that is focused on my sons illness even if it is a related illness and I will share what I can. I will say the she is very excited about the new retrovirus and sits on the committee that is reviewing the national blood supply for the NIH, in doing so is very connected with all of the current research. I asked her the time line and she responded that we will know if this is a root cause in the next 6-9 months. " IF " and this is a VERY big IF, this new family of virus is a root cause 2011 may be a very big year in the world of Autism I will ask her if any of her associates are focused on this facet of the illness and see children but do not get excited. When I worked to get this out on the SCIA (No longer working with them) She told me I would drive parents crazy in that there is " NO " money for immune research and few Doctors that truly understand immune and neuroinflammation and Autism. Scientists go where the dollars are. Look for the WPI and CSF to find us a cure! Call Autism speaks and give them an ear full, We need their bucks in the correct sector! Bill ________________________________ From: Kay <kp_mlist@...> Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 6:01:27 PM Subject: Re: Imunovir & Dr Goldberg Got it. Thanks Bill. Does she see kids with the Autism label in clinical practice? We live in Northern CA so is a big trek to goto Florida. Are there other immunologist perhaps in the west coast that are close to her research? We asked the folks at Stanford but doesn't look like they buy into the immune connection just yet. Thanks, ________________________________ From: Bill klimas <klimas_bill@...> Kay <kp_mlist@...> Sent: Tue, August 24, 2010 2:32:00 PM Subject: Re: Imunovir & Dr Goldberg Kay I believe she addresses that. She is not only a clinician and researcher but also director of the U of M immunology lab. She uses NK cell counts and NK cell function as a surrogate for cytotoxic T cell function. It is in the immune panels that she runs. I do know she has ID'ed several markers that she can use to determine the severity of CSF in her patients but I am not up on those and I do not believe that any other immunologist is using these markers. Primarily research driven. ________________________________ From: Kay <kp_mlist@...> klimas_bill@... Sent: Tue, August 24, 2010 4:58:24 PM Subject: Re: Imunovir & Dr Goldberg Bill, This is interesting to know. My posts don't make it to the board so am writing off the list. Are there any biomarkers for low granzyme & perforin content or how do we ascertain that the cells are poorly functioning? ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 1:18:33 PM Subject: Re: Imunovir & Dr Goldberg Dr Klimas' explanation of the function of imunovir In my experience imunovir increases NK cell function by increasing the amount of granzymes/cell; in effect improving the ability of the cell to kill virally infected targets. I usually see elevated NK cell numbers when the function is poor - a compensation for poor function, making increasing number of cells to do the job. Its not all bad to have compensatory mechanisms, it is worse when there is poor function and a low number. In my research area, Chronic Fatigue Syndrome and Gulf War Illness, NK cell function is poor because there is a low granzyme and perforin content of the cell. This is also true of cytotoxic T cells, the other antiviral cell and possibly the more important of the two - its function is harder to measure, so we have used NK cell function as a surrogate for cytotoxic T cell function, after proving that the granzyme and perforin content of both NK and of Cytotoxic T cells is low. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 3:31:59 PM Subject: Re: Imunovir & Dr Goldberg Thanks, Bill. Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 10:57:34 AM Subject: Re: Imunovir & Dr Goldberg Yes according to Dr K. I will bring down high NK . I will drop her a note and ask her to explain then forward it back to the list. ________________________________ From: Robyn & Greg Coggins <rngcoggs@...> Sent: Tue, August 24, 2010 1:26:27 PM Subject: Re: Imunovir & Dr Goldberg Hi, Bill. Another question about Imunovir...does it function to normalize NK cells whether they're high or low? Thanks! Robyn ________________________________ From: Bill klimas <klimas_bill@...> Sent: Tue, August 24, 2010 5:37:44 AM Subject: Re: Imunovir & Dr Goldberg Sorry if i was not clear. We are on and have been on Acyclovir continuously for several years. The Imunovir is not an antiviral in the sense that Valtrex, Famir or Acyclovir. These three block vital replication. Imunovir is an Immune modulator that increases NK cell function and counts. In that it supports the immune systems effectiveness it acts as an antiviral. Dr Klimas explained after several months on Imunovir the immune system hits a plateau. To get additional benefit you need to take a hiatus - (Dr K does a one month break after six months - Dr G does a two week break after three months) and when you restart it you can boost the immune system another notch.. ________________________________ From: " Googahly@... " <Googahly@...> Sent: Tue, August 24, 2010 12:00:59 AM Subject: Re: Imunovir & Dr Goldberg Do you take another antiviral during the hiatus? Gaylen In a message dated 8/16/2010 1:49:10 P.M. Central Daylight Time, klimas_bill@... writes: yes, We were on a pulse dosage such as yours for six months (Dr Klimas' recommendation) and the effects hit a plateau. We then took a two month hiatus and restarted several months ago with good gains. We do five tablets a day - week one and three tables a day - week two, week ends off. Uric acid is generally slightly high 6.5 +/- on monthly blood work with no negative side effects ________________________________ From: Fund <_susan_fund@..._ (mailto:susan_fund@...) > _ _ (mailto: ) Sent: Mon, August 16, 2010 2:27:48 PM Subject: Imunovir & Dr Goldberg My son has been on Imunovir for 6 months w/ some minor gains. My DAN doc follows Dr Cheney's dosing schedule for the Imunovir. First week 6 tablets per day Mon thru Fri and none on Sat and Sun. The next week It's just 2 tablets Mon thru Fri with none on Sat and Sun.You rotate week one and week two for 2 months and then take a month off. Dr Cheney says that if you dose it consistently the Imunovir will stop working so you need to pulse it and change the dose to trick the immune system into kicking in. Does Dr Goldberg recommend changing the dose or keeping a constant dose? Has anyone who has used Imunovir consistently found it to stop working? Thanks! Quote Link to comment Share on other sites More sharing options...
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