• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

New Book on Epstein Barr

Messages
53
Hi,

My osteopath just referred me to a new book on Epstein Barr by Dr. Kasia Kines.

The Epstein-Barr Virus Solution: The Hidden Undiagnosed Epidemic of a Virus Destroying Millions of Lives through Chronic Fatigue, Autoimmune Disorders, and Cancer.

https://www.amazon.com/Epstein-Barr...3&sr=1-1&keywords=epstein+barr+virus+solution

It's extremely thorough and presents the research in a comprehensive and easy to understand manner, including how to interpret lab tests. She also includes an extensive roadmap to recovery. I'm finding the book very hopeful in its message that recovery from Epstein Barr is possible.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
@Mary can you please move this to the Treatment section /Antivirals, Antibiotics and Immune Modulators?

I saw a presentation of the naturopath author of this book Kasia Kines on Youtube.


I liked her coverage of how EBV citrilineization of amino acids causes autoimmune disease but the reviews of the treatment recommendations are scathing. They say she often posts research she hasn't read and the herbal recommendations aren't good. I looked over the treatment section of the book and it was using strong antioxidants, herbs and making the general naturopath recommendations about mold and avoiding Wifi that looked very sketchy.

Frankly, it just looks like another ineffective treatment and there are no studies showing that her approach actually works.

Has anyone tried it?
 
Messages
33
Actually, (for what it's worth) at the moment, 74% of reviewers have given this book a 5-star rating, and many of the "scathing" reviews are just complaints that the Kindle version (not currently available) had "print" that was too faint to read.

The 7 supplements Kines recommends (in the video posted above) are (specific dosages for "acute" and "long-term" are suggested in the book):
--Selenium
--Zinc
--Vitamin E
--Vitamin A
--NAC
--Lysine
--Licorice

Kines says this program can suggest if EBV is a problem in about 3 weeks, and the response she sees in patients/clients is "consistent." (She acknowledges that mold and Lyme and/or other co-infections can confuse things.)

While we wait 50 years for mainstream medicine to make sense of EBV and its possible role in CFS/ME, a 3-week trial of some supplements might not be a bad idea. Has anyone tried this?

Dr. Martin Lerner thought EBV was a problem (and evidently cured his own EBV-caused CFS), but he passed in 2015.
https://www.healthrising.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/dr-martin-lerner/
 

nyanko_the_sane

Because everyday is Caturday...
Messages
655
I think EBV's days are numbered. While this does not help us, it will help to prevent others from getting sick.
  • Epstein-Barr virus (EBV) vaccine (mRNA-1189): mRNA-1189 is a vaccine against EBV containing five mRNAs that encode viral proteins (gp350, gB, gp42, gH and gL) in EBV. Similar to Moderna’s CMV vaccine (mRNA-1647), the viral proteins in mRNA-1189 are expressed in their native membrane-bound form for recognition by the immune system.
  • Cytomegalovirus (CMV) vaccine (mRNA-1647): Positive interim data from the phase 2 study assessing the safety, reactogenicity, and immunogenicity of different dose levels of mRNA-1647 were presented at Moderna’s annual R&D Day. Based on the interim analysis of the phase 2 study, the 100 μg dose has been chosen for the phase 3 pivotal study.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
I think EBV's days are numbered. While this does not help us, it will help to prevent others from getting sick.
  • Epstein-Barr virus (EBV) vaccine (mRNA-1189): mRNA-1189 is a vaccine against EBV containing five mRNAs that encode viral proteins (gp350, gB, gp42, gH and gL) in EBV. Similar to Moderna’s CMV vaccine (mRNA-1647), the viral proteins in mRNA-1189 are expressed in their native membrane-bound form for recognition by the immune system.
  • Cytomegalovirus (CMV) vaccine (mRNA-1647): Positive interim data from the phase 2 study assessing the safety, reactogenicity, and immunogenicity of different dose levels of mRNA-1647 were presented at Moderna’s annual R&D Day. Based on the interim analysis of the phase 2 study, the 100 μg dose has been chosen for the phase 3 pivotal study.

Fuck... EBV mono triggered my ME
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
The 7 supplements Kines recommends (in the video posted above) are (specific dosages for "acute" and "long-term" are suggested in the book):
--Selenium
--Zinc
--Vitamin E
--Vitamin A
--NAC
--Lysine
--Licorice
https://www.healthrising.org/chronic-fatigue-syndrome-mecfs-doctor-resource-center/dr-martin-lerner/

Licorice and NAC are tricky. Licorice is easily overdosed. Allowed dose is only 4 pieces per day of the real black candy form because it depletes potassium which when licorice is overdosed causes fatal arrthymias. I can see using it to slow progression but watch the quantity.

By the way, it is much more economical to purchase powered licorice and make tea rather than using candy. One teaspoon makes 16 oz which if you add lemon can be stored in the refrigerator and keeps 1 week. Goes well with stevia after brewing and before chilling. I think 1/2 cup of tea=1 piece of candy so I'd limit it to 2 cups of tea per day.

NAC is a very strong antioxidant which increases cancer risk. I would avoid it. Reduced glutathione or S-adenyl-L-glutathione to increase antioxidant protection in adults is safer and allows the body to self regulate.
 
Last edited:

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
Actually, (for what it's worth) at the moment, 74% of reviewers have given this book a 5-star rating, and many of the "scathing" reviews are just complaints that the Kindle version (not currently available) had "print" that was too faint to read.

You have to remember that most of the people are laymen. When research qualified people say she doesn't do good research then that is a serious complaint and that outweights popularity. If her approach was really curing EBV I'd want to see some evidence as lab test changes in EBV load, improved exercise tests, lowered nagalase levels, something that can directly measure it. I track periosteal inflammation which is easy to quantify visually with photos and also monitor changes in depression, anxiety and energy level. I can also lower my immunosuppressant and cytokine medication levels and see if the lupus flares return to see where the autoimmunity is. Appetite sensing tells me how much supplement is being absorbed which reflects the number of infected cells still present. When I start treating patients with this I'd like to monitor nagalase level as an endpoint.
 
Last edited by a moderator:

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
and junk science (EMFs and microwave use).
It's not junk science. Actually, EMFs have been found to negatively affect the body in different ways. This can vary due to genetics and environmental factors.
The 7 supplements Kines recommends (in the video posted above) are (specific dosages for "acute" and "long-term" are suggested in the book):
--Selenium
--Zinc
--Vitamin E
--Vitamin A
--NAC
--Lysine
--Licorice

Kines says this program can suggest if EBV is a problem in about 3 weeks, and the response she sees in patients/clients is "consistent." (She acknowledges that mold and Lyme and/or other co-infections can confuse things.)

While we wait 50 years for mainstream medicine to make sense of EBV and its possible role in CFS/ME, a 3-week trial of some supplements might not be a bad idea. Has anyone tried this?
I've been on all of the above for the past 6 years, except for the licorice, which can significantly increase blood pressure. Though they've helped my general health, they did nothing for my EBV. Valganciclovir for over a year was the only thing I've tried that beat back my EBV, CMV, and HHV6, with the support of IVIG.
 

gbells

Improved ME from 2 to 6
Messages
1,494
Location
Alexandria, VA USA
I've been on all of the above for the past 6 years, except for the licorice, which can significantly increase blood pressure. Though they've helped my general health, they did nothing for my EBV. Valganciclovir for over a year was the only thing I've tried that beat back my EBV, CMV, and HHV6, with the support of IVIG.

That was my impression as well. Kines is your typical naturopath giving poorly researched general recommendations for a condition while pretending that this is specific and effective. This is why they aren't taken seriously by medicine. Integrative physicians do this all the time too. They rarely work and you end up wasting a lot of money.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
It's not junk science. Actually, EMFs have been found to negatively affect the body in different ways. This can vary due to genetics and environmental factors.

You are stating this as if it’s fact. Trust me I’m not against it but show the science... please show me the high-quality studies which have shown there is a causal connection between non-ionizing EMFs and cancer for example, because that’s the main culprit people claim. There are none.

https://www.cancer.gov/about-cancer...k/radiation/electromagnetic-fields-fact-sheet

Why are non-ionizing EMFs studied in relation to cancer?

Power lines and electrical appliances that emit non-ionizing EMFs are present everywhere in homes and workplaces. For example, wireless local networks are nearly always “on” and are increasingly commonplace in homes, schools, and many public places.

No mechanism by which ELF-EMFs or radiofrequency radiation could cause cancer has been identified. Unlike high-energy (ionizing) radiation, EMFs in the non-ionizing part of the electromagnetic spectrum cannot damage DNA or cells directly. Some scientists have speculated that ELF-EMFs could cause cancer through other mechanisms, such as by reducing levels of the hormone melatonin. There is some evidence that melatonin may suppress the development of certain tumors.

Studies of animals have not provided any indications that exposure to ELF-EMFs is associated with cancer (912). The few high-quality studies in animals have provided no evidence that Wi-Fi is harmful to health (7).

Although there is no known mechanism by which non-ionizing EMFs could damage DNA and cause cancer, even a small increase in risk would be of clinical importance given how widespread exposure to these fields is.
 

leokitten

Senior Member
Messages
1,595
Location
U.S.
What have studies shown about possible associations between non-ionizing EMFs and cancer in adults?

Many studies have examined the association between non-ionizing EMF exposure and cancer in adults, of which few studies have reported evidence of increased risk (1).
Residential exposures. The majority of epidemiologic studies have shown no relationship between breast cancer in women and exposure to extremely low frequency EMFs (ELF-EMFs) in the home (4144), although a few individual studies have suggested an association; only one reported results that were statistically significant (45).
Workplace exposures to ELF radiation. Several studies conducted in the 1980s and early 1990s reported that people who worked in some electrical occupations that exposed them to ELF radiation (such as power station operators and telephone line workers) had higher-than-expected rates of some types of cancer, particularly leukemia, brain tumors, and male breast cancer (12). Most of the results were based on participants’ job titles and not on actual measurements of their exposures. More recent studies, including some that considered exposure measurements as well as job titles, have generally not shown an increasing risk of leukemia, brain tumors, or female breast cancer with increasing exposure to magnetic fields at work (4550).
Workplace exposures to radiofrequency radiation. A limited number of studies have evaluated risks of cancer in workers exposed to radiofrequency radiation. A large study of U.S. Navy personnel found no excess of brain tumors among those with a high probability of exposure to radar (including electronics technicians, aviation technicians, and fire control technicians); however, nonlymphocytic leukemia, particularly acute myeloid leukemia, was increased in electronics technicians in aviation squadrons, but not in Navy personnel in the other job categories (51). A case-control study among U.S. Air Force personnel found the suggestion of an increased risk of brain cancer among personnel who maintained or repaired radiofrequency or microwave-emitting equipment (52). A case-control study found the suggestion of an increased risk of death from brain cancer among men occupationally exposed to microwave and/or radiofrequency radiation, with all of the excess risk among workers in electrical and electronics jobs involving design, manufacture, repair, or installation of electrical or electronics equipment (53). There was no evidence that electrical utility workers who were exposed to pulsed electromagnetic fields produced by power lines were more likely to develop brain tumors or leukemia than the general population (54). Employees of a large manufacturer of wireless communication products were not more likely to die from brain tumors or cancers of the hematopoietic or lymphatic system than the general population (55). A large prospective study among police officers in Great Britain found no evidence for an association between radiofrequency EMF exposure from personal radio use and the risk of all cancers combined (56).