EPSTEIN-BARR VIRUS in MC and AUTOIMMUNITY!!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Tex,
PDF works well for me thank you. I will "digest" chapter 5. I know it may go against the grain here but the thing I see in the article is perhaps in some of our cases there may be a "smoking gun" like an infection that has dysregulated VDR. That was my point in posting this article...along with the point that a one size fits all recommendation to supplement vitamin D perhaps shouldn't be blindly accepted. From my observation it seems the whole practicing medical community has now embraced this notion and jumped in with the herd. That right there is enough to give me pause.
Gigi
PDF works well for me thank you. I will "digest" chapter 5. I know it may go against the grain here but the thing I see in the article is perhaps in some of our cases there may be a "smoking gun" like an infection that has dysregulated VDR. That was my point in posting this article...along with the point that a one size fits all recommendation to supplement vitamin D perhaps shouldn't be blindly accepted. From my observation it seems the whole practicing medical community has now embraced this notion and jumped in with the herd. That right there is enough to give me pause.
Gigi
LC diagnosed July 2014
At this stage of the game, everything is a smoking gun as far as AI diseases are concerned. I try to bring all that confusion into perspective in the book. At this point, nothing is chiseled in stone, and the book is also loaded with medical research references, but remember when reading research articles that most of them reach the wrong conclusions. Unlike most research articles, the fact that most of them reach invalid conclusions is a proven fact.
You should have the email by now.
Tex
You should have the email by now.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I'm jumping in here even though I do not have any detailed understanding of vitamin d and inflammation. I believe that the search for a smoking gun is based on a faulty perspective on how the body functions. The body is a complex system so that searching for that one thing that will bring everything else into perspective feels to me like a fools errand. The foundation for any "healing" plan needs to be remove all things that are causing inflammation and provide those things that the body needs to function optimally (first real "safe" foods and then supplemental nutrients as needed). I tend to be more practically oriented towards figuring out what works than theoretically oriented so mostly I do not read the research articles. The research often seems like blind men feeling an elephant, touching only a part and thinking you understand the whole thing.tex wrote:At this stage of the game, everything is a smoking gun as far as AI diseases are concerned. I try to bring all that confusion into perspective in the book.
Tex
Jean
Interesting read. I had Epstein Barr back in my 20's when this all first started! They kept calling it "Atypical Mononucleosis" until someone AGAIN decided to look further and found the Epstein Barr. I went from that into pleurisy and pericardial infection (it was quite a ride).
Now I have MANY autoimmune issues.
Something quite interesting in all this, for sure!
Now I have MANY autoimmune issues.
Something quite interesting in all this, for sure!
Hi all,
This is not about me, but about my 35 year old son. He had EBV back in 1999, and had symptoms for 3-4 years after that.
Now, in 2014-2015 he has recurrent flu symptoms, and now his doctor has said that he must not exercise for the rest of the year. He's of course frustrated, because he cannot participate in ski races and bicycle races, and these are his hobbies (he is single). He is allowed to take walks only. He has no strength to do anything after work, just watch tv...
The blood tests taken last week show that he has some "EBV residue".
He has turned to me, and asked me to help him. Up till now I have given him some of my magnesium and vitamin D3, but he says it doesn't help, and I'll soon run out of the good vitamins that we can no longer get a hold of because of new import regulations.
I have researched a lot on the internet, but there is not much to find other than medications, medications... and I'm afraid that he will end up with digestive problems like his mother, if he goes into "the medication trap".
Do you have any suggestions? He is a well trained 2 meter tall young man, who has never been sick other than the EBV in 1999.
PS: He quit drinking cow's milk last year, because he noticed that milk upset his stomach.
Lilia
This is not about me, but about my 35 year old son. He had EBV back in 1999, and had symptoms for 3-4 years after that.
Now, in 2014-2015 he has recurrent flu symptoms, and now his doctor has said that he must not exercise for the rest of the year. He's of course frustrated, because he cannot participate in ski races and bicycle races, and these are his hobbies (he is single). He is allowed to take walks only. He has no strength to do anything after work, just watch tv...
The blood tests taken last week show that he has some "EBV residue".
He has turned to me, and asked me to help him. Up till now I have given him some of my magnesium and vitamin D3, but he says it doesn't help, and I'll soon run out of the good vitamins that we can no longer get a hold of because of new import regulations.
I have researched a lot on the internet, but there is not much to find other than medications, medications... and I'm afraid that he will end up with digestive problems like his mother, if he goes into "the medication trap".
Do you have any suggestions? He is a well trained 2 meter tall young man, who has never been sick other than the EBV in 1999.
PS: He quit drinking cow's milk last year, because he noticed that milk upset his stomach.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
About twenty five years ago as an adult, I contracted Coxackie Virus.
I had recurring bouts of Pleurodynia, starting in March each year. For the first two years I had it for eleven months out of twelve. Over time the bouts became shorter and shorter until one March twenty years later it seemed to vanish. It didn't vanish, I'd have the chest pain symptoms for a day or two and sometimes for a few hours at random times.
In my youth I was a registered nurse, midwife and community health nurse. It's possible I picked Coxackie virus up from those days. Just a few days ago I had involuntary muscle spasms in the same intercostal muscles as I used to get the Coxackie. I know this isn't Epstein Barr the same but it is fairly uncommon.
I had recurring bouts of Pleurodynia, starting in March each year. For the first two years I had it for eleven months out of twelve. Over time the bouts became shorter and shorter until one March twenty years later it seemed to vanish. It didn't vanish, I'd have the chest pain symptoms for a day or two and sometimes for a few hours at random times.
In my youth I was a registered nurse, midwife and community health nurse. It's possible I picked Coxackie virus up from those days. Just a few days ago I had involuntary muscle spasms in the same intercostal muscles as I used to get the Coxackie. I know this isn't Epstein Barr the same but it is fairly uncommon.
Psoriatic Arthritis
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
Hypertension
Hashimoto Thyroiditis
Allergies
Severe Atopic Reactions
HIT
Elimination Diet Start : 1/9/15
That is exactly how my MC symptoms began. For a year or so, I thought that I was just having relapses of the flu. Then I decided that I was just unlucky, and I was having food poisoning (repeatedly ) because of eating fast food while out making deliveries at work. Then one day the D started, and wouldn't stop.Lilia wrote:Now, in 2014-2015 he has recurrent flu symptoms
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Thank you, Gabes and Tex!
My friend has suggested that he measures his anti TPO, and if it is under 100, he needs iodine.
I don't understand the connection, but will convey the message.
Lilia
My friend has suggested that he measures his anti TPO, and if it is under 100, he needs iodine.
I don't understand the connection, but will convey the message.
Lilia
Collagenous Colitis diagnosis in 2010
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Psoriasis in 1973, symptom free in 2014
GF, CF and SF free since April, 2013
Lilia,
I have low grade chronic Epstein Barr Virus, proven by some antibody studies. My integrative medicine doc recommends Monolaurin as an antiviral for this purpose, and also the amino acid L-Lysine. She said if my numbers ever get high, like a reactivation, she would try prescription anti-virals on me, like the ones they use for Herpes infections.
I have low grade chronic Epstein Barr Virus, proven by some antibody studies. My integrative medicine doc recommends Monolaurin as an antiviral for this purpose, and also the amino acid L-Lysine. She said if my numbers ever get high, like a reactivation, she would try prescription anti-virals on me, like the ones they use for Herpes infections.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
For what it's worth (or not) I came across this snippet of a book that came out recently. After reading through it, I realized I had seen some conversations on EBV here and so this may be interesting to some.
http://goop.com/the-medical-medium-and- ... mysteries/
Taia
http://goop.com/the-medical-medium-and- ... mysteries/
Taia
Yes, I read that too. I'm very intrigued, although I don't think I'm buying that EBV causes Hep C!
Check this out. It seems EBV may be implicated in MS and other neurological diseases because it can infect our neurons!! We already know EBV can be found in large numbers in the diseased tissue of IBDs. It seems to cause havoc everywhere!
http://medicalxpress.com/news/2015-12-h ... urons.html
Check this out. It seems EBV may be implicated in MS and other neurological diseases because it can infect our neurons!! We already know EBV can be found in large numbers in the diseased tissue of IBDs. It seems to cause havoc everywhere!
http://medicalxpress.com/news/2015-12-h ... urons.html
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
There is a new book out called Medical Medium. You can look up this guys history and story and make fun of me later . I find it interesting that he claims most of our medical issues are caused by centuries old EBV that is lurking throughout our bodies in different stages. He says that Dr.s are not aware that EBV can live in tissues and cells and not show up on any blood tests. A pretty interesting read if you have an open mind and for this thread. He gives a lot of good info and some advice on natural ways to kill the virus that is lurking in hidden places. If there is one thing that this disease has taught me is ANYTHING IS POSSIBLE!
Boy I'm smart....Just read the above post.
Boy I'm smart....Just read the above post.
Vanessa
- Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
my pondering is - like many things, we may all have traces of EPV, it is the process of how far it gets into our cells/Neurons that is the linkage to illness.
other environmental issues (diet, inflammation, parasites etc) will contribute to the impact that EPV can have.
People in countries like Papua New Guinea are born with malaria, albeit they do not get sick from it, some can go a lifetime and never have active malaria illness. until other viruses enter the body (like TB and HIV etc) or if they travel to other countries and get parasites, bugs etc THEN they get sick with malaria issues.
it may well be that we are born with EPV, so yes it will be lurking in our bodies. If it gets awoken from its hibernation (like MC) and has damaging impact.
is it the root cause of the issues? I dont believe so, but it is contributing to the stress on the body, the cells and our wellness when it is active.
IMO, it is one of the 20-30 elements of illness, for some people it has greater impact and influence on what is happening.
other environmental issues (diet, inflammation, parasites etc) will contribute to the impact that EPV can have.
People in countries like Papua New Guinea are born with malaria, albeit they do not get sick from it, some can go a lifetime and never have active malaria illness. until other viruses enter the body (like TB and HIV etc) or if they travel to other countries and get parasites, bugs etc THEN they get sick with malaria issues.
it may well be that we are born with EPV, so yes it will be lurking in our bodies. If it gets awoken from its hibernation (like MC) and has damaging impact.
is it the root cause of the issues? I dont believe so, but it is contributing to the stress on the body, the cells and our wellness when it is active.
IMO, it is one of the 20-30 elements of illness, for some people it has greater impact and influence on what is happening.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Well, my ongoing science experiment seems to have gone full circle... I now have an active Epstein Barr Virus infection. A relapse, not just an activation of my chronic EBV. I've been dealing with leukopenia this year. It was low lymphocytes early in the year, then low lymphocytes and neutrophils in December, and my rash started flaring in November. I wasted my time being referred to a hematologist who merely assured me I didn't have lymphoma, then went for routine bloodwork to check my thyroid, Vit D, iodine and viral titers.
All my viral titers were very high (EBV and HHV-6), and for the first time, my EBV IgM was high, which indicates active infection.
My Vit D was 30 after being in the mid 40s the last couple of years. My iodine was 22, down from 50 two months ago (also low). Thyroid numbers were good, meaning my 3/4 grain Naturethyroid is a good dose.
So I'm left here wondering if my DM rash is actually a side effect of my immune system's battle against EBV. The rash is actually starting to fade somewhat. Maybe my immune system is too beat up and busy fighting the EBV? All my doctors agree that I'm in a medication conundrum. Standard therapies for DM like methotrexate might help, but more likely would be disastrous. Steroids could help increase the WBCs, but have so many downsides, and might let the EBV get more out of control.
So I've been prescribed 10 days of Valacyclovir, an antiviral used for herpes (EBV is in the herpes family), I'm tripling my doses of L-Lysine, Monolaurin, and Vitamin C, and I might even consider doing an IV of Vit C, B-12, glutathione, magnesium and other nutrients (worth it for $200?). I might visit my old acupuncturist while I'm throwing money at this.
I have no idea how long it could take to get the EBV under control, or what the side effects will be like. More D, I imagine (and the MC has been really mild lately!). Will all the immune system boosting make my rash go crazy? Ugh.
Anyway, I still stand by my smoking gun. F-ing EBV.
All my viral titers were very high (EBV and HHV-6), and for the first time, my EBV IgM was high, which indicates active infection.
My Vit D was 30 after being in the mid 40s the last couple of years. My iodine was 22, down from 50 two months ago (also low). Thyroid numbers were good, meaning my 3/4 grain Naturethyroid is a good dose.
So I'm left here wondering if my DM rash is actually a side effect of my immune system's battle against EBV. The rash is actually starting to fade somewhat. Maybe my immune system is too beat up and busy fighting the EBV? All my doctors agree that I'm in a medication conundrum. Standard therapies for DM like methotrexate might help, but more likely would be disastrous. Steroids could help increase the WBCs, but have so many downsides, and might let the EBV get more out of control.
So I've been prescribed 10 days of Valacyclovir, an antiviral used for herpes (EBV is in the herpes family), I'm tripling my doses of L-Lysine, Monolaurin, and Vitamin C, and I might even consider doing an IV of Vit C, B-12, glutathione, magnesium and other nutrients (worth it for $200?). I might visit my old acupuncturist while I'm throwing money at this.
I have no idea how long it could take to get the EBV under control, or what the side effects will be like. More D, I imagine (and the MC has been really mild lately!). Will all the immune system boosting make my rash go crazy? Ugh.
Anyway, I still stand by my smoking gun. F-ing EBV.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone