Some older symptoms came back, is there a contagious component to some of these illnesses?

[Martial]

Hi guys I used to post here quite a bit when I first got sick back around 2013. Since then I found out I had a serious case of Lyme disease and some co infections that I went to treat with a local LLMD. I eventually got on the Buhner healing lyme protocol and did very well with it.

Never took an aggressive amount of doses but gradually my symptoms went away and my health was restored in an up and down process. I just consistently took a moderate doses of some herbs based on my symptoms and infections I was dealing with. Along with weight lifting exercise and diet and lifestyle changes.

I was never 100 percent recovered as I sometimes would feel certain symptoms come up that also reminded me that I was still dealing with some lingering stuff from the infection. I never had an herbalist I worked with or knew the best doses and things to use in the first place, so that could also have to do with it.


Anyways I work as a behavior therapist, and one of my most recent cases actually had a diagnosis of CFS and went to the same doctor I once did. Since working that case a few weeks ago. Some short time after that I also noticed some older strong symptoms come back that I haven't really felt that strong in a couple years at least.

Although I always had things here and there come up, it was probably more severe then I was used to. Neuro Lyme/ brain symptoms. Being that I had some stuff come up around the same time I worked on that case. It could just be coincidental and I wasn't ever 100 percent recovered in the first place.

But could it be possible that I picked something up from that other person? From my understanding CFIDS/ME is not something that is known to be contagious to others. Even more so with chronic cases and not in early stages of acute infection too. I was just in the same room as this person and had social contact for a few amount of times working with them.

So unless aerosols spread something and there is something that can be spread from close social contact I really am just scratching my head about it. Perhaps they might have mold in their home? Or maybe most likely I just have a flare of old symptoms again and need to stay on top of my treatment.

Anyways it had been a few years since I have been on this site as well, so I don't know what has changed in that time in terms of knowledge about all these different illnesses and wanted to just get other peoples feed back and see what others think.


My understanding is CFS/ME can have times of re activating certain infections which the person carries because there immune system is unable to handle it. And those infections or viruses can be spread. But those same infections and viruses are just as common in normal public. And the actual chronic long lasting condition itself cannot be spread.

 

[ljimbo423]

My understanding is CFS/ME can have times of re activating certain infections which the person carries because there immune system is unable to handle it. And those infections or viruses can be spread. But those same infections and viruses are just as common in normal public. And the actual chronic long lasting condition itself cannot be spread.

I have been researching CFS for 11 years and have many thousands of hours into it. I have never seen research showing that CFS can be contagious. I think it's more likely that you are experiencing a minor flare of some kind.

I hope this helps to relieve some of your concerns. Congrats on your health improvement!!

Jim

 

[Hip]

But could it be possible that I picked something up from that other person?

It is possible, but typically you would have experienced some acute symptoms when contracting a new pathogen, such as a gastrointestinal illness, sore throat, flu-like illness (although you can also pick up new viruses asymptomatically).

I have never seen research showing that CFS can be contagious.

There is research showing that genetically unrelated spouses or partners of ME/CFS patients have 10 times the prevalence of ME/CFS. And relatives have 2 to 3 times higher risk of developing ME/CFS. See this post.

So that suggests the viruses linked to ME/CFS when they transmit to spouses and relatives may trigger ME/CFS.

 

[ljimbo423]

There is research showing that genetically unrelated spouses or partners of ME/CFS patients have 10 times the prevalence of ME/CFS. And relatives have 2 to 3 times higher risk of developing ME/CFS. See this post.

So that suggests the viruses linked to ME/CFS when they transmit to spouses and relatives may trigger ME/CFS.

I believe if one has enough of a compromised gut. Which is very common in the general public.

Then a viral infection, especially a particularly virulent one like EBV, could trigger CFS in that person. The viral infection doesn't cause CFS, it only triggers it.

Jim

 

[Martial]

It is possible, but typically you would have experienced some acute symptoms when contracting a new pathogen, such as a gastrointestinal illness, sore throat, flu-like illness (although you can also pick up new viruses asymptomatically).





There is research showing that genetically unrelated spouses or partners of ME/CFS patients have 10 times the prevalence of ME/CFS. And relatives have 2 to 3 times higher risk of developing ME/CFS. See this post.

So that suggests the viruses linked to ME/CFS when they transmit to spouses and relatives may trigger ME/CFS.

Interesting, I had a common cold somewhat recently but nothing out of the usual. I didn't drink out of the same cups or share utensils or anything though. No saliva contact. He didnt ever sneeze or cough in front of me either. I know this because I was slightly edgy after I heard about the diagnosis and my own health issues. So I was very on top of keeping my hands clean and was pretty paranoid about getting sick again lol.

None of the other family members have it, and I have only been in contact a very limited amount of time. So unless there was someway that some kind of virus would be spread from just breathing the same air, or germs on a table or something I just don't think it would make sense in my case.

They have a CFS diagnosis but they were never as sick as I once was. And its not identified CFS/ME but they do have some kind of chronic fatigue/ lyme like illness. I am probably going to just request off the case so I don't have to stress risking my already not fully recovered health with any reactivated infections I could pick up.

Like you said I guess there is some studies to show possibility so anything is probable, but it just seems fairly unlikely. Maybe if I had a CFS/ME partner and having intimate contact with them over a period of time. Certainly it would feel given my own pre existing health conditions that it would put me higher at risk for something.

Possibility there could be some kind of mold or environmental hazard in the house I was in as well. Not really sure. Anyways I have been sick before and never really recovered fully. Still using treatment. So its not as if I am someone who was fully healthy and no symptoms and suddenly have a lot of issues. I am or was for the most part 85 - 90 percent better I would say.

I find it doesn't really fit current research or understanding that there is a single contagious bacteria or virus that is solely responsible for this condition and that it can spread to others after long term illness. It seems in most cases there is a variety of factors that attribute to a trigger and continued illness. Some environmental, genetic, etc.

That is an interesting study though and does make me wonder. Though I saw others that also said the opposite so it is a bit confusing. It seems there is some amount of contradictory research and studies pertaining to the illness.

Such as the xmrv virus being a possible means of CFS/ME infection, and the follow up study which said they disproved it. There was one about non HIV aids virus too. Not sure if that is the same virus or another too. But that seemed to cause some controversy as well.

 

[Martial]

I believe if one has enough of a compromised gut. Which is very common in the general public.

Then a viral infection, especially a particularly virulent one like EBV, could trigger CFS in that person. The viral infection doesn't cause CFS, it only triggers it.

Jim

That is my feeling as well. That there are a lot of different pathogens and or factors that seem to trigger CFS in a person. And that a lot of the viruses and infections common in ME/CFS are things that most the general public have dealt with at some point as well.

Unless somehow CFS/ME was discovered to be a transmittable long occurring illness on its own accord. But the evidence and research I have heard of so far did not seem to show that. And many of the top CFS researchers agree that risk of being contagious doesn't seem something to worry about.

I read some different threads on this forum and other stuff on the web about the risk of being contagious before posting. As I wanted to see what the general consensus was outside of what the CDC claimed. Some people mentioned family members or non blood related partners getting ill. But the full picture not really understood. As in those cases it doesn't seem as simple to point to a virus being spread and causing the other person to develop the condition by itself.

Most seemed to point to not likely to be contagious but that there is no single definitive factor. I read that some researcher did say however that blood products are a known factor in potentially spreading the illness though. I think a non saliva based means of transmission especially would show a LOT more people being ill and a faster spread of the condition.

Most people here are a lot more informed and educated on all of this stuff then me though. Especially when it comes down to ME/CFS. So I thought an open ended talk about it with different perspectives would be good to know. The other threads I saw were more then a few years old too. And there always seems to be new studies and research out that points in new directions.

 

[Hip]

Then a viral infection, especially a particularly virulent one like EBV, could trigger CFS in that person. The viral infection doesn't cause CFS, it only triggers it.

Nobody knows for sure whether a viral infection just triggers ME/CFS or is an ongoing cause of ME/CFS. It's a debate that has gone on for decades.

 

[Martial]

Nobody knows for sure whether a viral infection just triggers ME/CFS or is an ongoing cause of ME/CFS. It's a debate that has gone on for decades.

That's true and what I noticed as well. But in terms of spreading the illness most the research and studies I saw so far pointed to unlikely to be contagious after the acute illness stage.

Outside of blood products/transfusion. Though I see how saliva and bodily fluids could theoretically be a higher risk factor even if it was very marginal or slim of possibility. As a lot of conditions or much easier to spread that way.

But transmission be contaminated surfaces and or breathing in an airborne illness after someone sneezes or coughs. That would make me think this illness would be a pandemic disease of which a very large amount of people would be very ill.

 

[Hip]

But in terms of spreading the illness most the research and studies I saw so far pointed to unlikely to be contagious after the acute illness stage.

The viruses linked to ME/CFS will not cause ME/CFS in everyone they infect. If someones's ME/CFS were due to coxsackievirus B infection for example, then you could easily pass that infection on to someone else, but the chances are they would not get ME/CFS from it (although they might get something else like say myocarditis, which can be caused by coxsackievirus B).

 

[ljimbo423]

Nobody knows for sure whether a viral infection just triggers ME/CFS or is an ongoing cause of ME/CFS. It's a debate that has gone on for decades.

That part of the debate is over for me. I am quite certain my cfs is not being caused by an ongoing viral infection. It took me 8-9 years to figure that out but I finally have. Everyone is entitled to their own opinion though.

Jim

 

[Martial]

The viruses linked to ME/CFS will not cause ME/CFS in everyone they infect. If someones's ME/CFS were due to coxsackievirus B infection for example, then you could easily pass that infection on to someone else, but the chances are they would not get ME/CFS from it (although they might get something else like say myocarditis, which can be caused by coxsackievirus B).

Yes that was what I was thinking as well. With mentioning certain re activated viruses which could spread. But having picked up those viruses does not mean you will get CFS/ME. That there are other factors at play as well. In my opinion something with the person and environment too.

Those who are prone to developing it seem to get it from many different causes but the ongoing chronic illness is the part that separates them from someone who gets sick, and eventually their immune system takes care of things.

These viruses and pathogens are not things that are rare in the general population either.

So if I ever developed me/cfs symptoms combined with my lyme disease. I dont feel its likely i picked up the cfs/me pathogen and now I too have CFS /ME.

 

[Hip]

I am quite certain my cfs is not being caused by an ongoing viral infection. It took me 8-9 years to figure that out but I finally have.

So you single-handedly were able to prove that your ME/CFS does not involve any ongoing viral infection, even though the international scientific community have not been able to this, in spite of all their dedicated research. Please do tell me how you were able to outsmart all these scientists, and were able to prove that your ME/CFS does not involve any ongoing infection.

 

[ljimbo423]

So you single-handedly were able to prove that your ME/CFS does not involve any ongoing viral infection, even though the international scientific community have not been able to this, in spite of all their dedicated research. Please do tell me how you were able to outsmart all these scientists, and were able to prove that your ME/CFS does not involve any ongoing infection.

Putting aside the profound disrespectful tone of your post. I didn't have to prove to anyone but myself that my cfs is not being caused by an ongoing virus.

The leading researchers, in the last several years have not found an ongoing viral infection causing CFS and I don't believe they will.

 

[Hip]

Putting aside the profound disrespectful tone of your post. I didn't have to prove to anyone but myself that my cfs is not being caused by an ongoing virus.

Are you sure it is not your post that is being kind of disrespectful. You are implying you know better than the entire scientific community, who so far have not been able to uncover the cause of ME/CFS, and have not been able to either conclusively prove nor disprove the role of viruses in ME/CFS.

But you are implying you are smarter, and were able to disprove it in your case. Please do explain how you were able to work this out.

 

[Martial]

Are you sure it is not your post that is being kind of disrespectful. You are implying you know better than the entire scientific community, who so far have not been able to uncover the cause of ME/CFS, and have not been able to either conclusively prove nor disprove the role of viruses in ME/CFS.

But you are implying you are smarter, and were able to disprove it in your case.

I think he is just saying he doesn't think his current health issues are the result of an ongoing infection. So for him he is looking at other possibilties. Jim didnt state that every cfs case known doesnt contain the possibility of on going infection, he is just talking about his own issues. Just an opinion. The same as the rest of us.

 

[Hip]

But having picked up those viruses does not mean you will get CFS/ME. That there are other factors at play as well.

Yes, I think just from the ME/CFS infectious outbreaks that occurred, we can draw the conclusion that other factors are very likely involved. One of the salient characteristics of these outbreaks is that as the virus spread in the local community, it caused a very high incidence of ME/CFS.

But mysteriously, the outbreaks never spread much outside their own locales, even though we can assume that the virus itself must have spread beyond these locales. So only logical explanation I can come up with is that there must have been and additional environmental factor present only in the locales that, in combination with the virus, caused ME/CFS.

In fact, in the case of the Lake Tahoe outbreak, the lake was covered in toxic cyanobacteria in the year of the outbreak.

I think he is just saying he doesn't think his current health issues are the result of an ongoing infection.

@ljimbo423 used the phrase "I am quite certain", which you would normally only used if you have very solid evidence of something.

None of us can know with certainty what is causing our ME/CFS, because the cause is not known; though we may have some hunches, and may prefer some theories over others.

 

[Martial]

Yes, I think just from the ME/CFS infectious outbreaks that occurred, we can draw the conclusion that other factors are very likely involved. One of the salient characteristics of these outbreaks is that as the virus spread in the local community, it caused a very high incidence of ME/CFS.

But mysteriously, the outbreaks never spread much outside their own locales, even though we can assume that the virus itself must have spread beyond these locales. So only logical explanation I can come up with is that there must have been and additional environmental factor present only in the locales that, in combination with the virus, caused ME/CFS.

In fact, in the case of the Lake Tahoe outbreak, the lake was covered in toxic cyanobacteria in the year of the outbreak.


My understanding is some of those cluster outbreaks later became identified as other illnesses as well such as post Q fever. I think I read that on here actually.


@ljimbo423 used the phrase "I am quite certain", which you would normally only used if you have very solid evidence of something.

None of us can know with certainty what is causing our ME/CFS, because the cause is not known; though we may have some hunches, and may prefer some theories over others.

I think thats just a matter of semantics though. We are talking amongst ourselves here. And what our feeling is for things going on with us. I was curious to know the wider held opinion on the risk of being contagious with CFS /ME and how it could possibly spread, which is why I made this thread.

I think the matter in which certain trigger pathogens can spread from persons with ME/CFS makes sense. They also arent that uncommon of viruses and healthy people carry them too.

So I wonder why some studies like the one you showed sited a higher risk factor for CFS/ME with spouses and family members. As they could pick up the same viruses and pathogens from anywhere, no?

Do we see a higher risk of viral myocarditis and other virus related death and or illness for those in close social contact with a CFS/ME person too? Or just a higher chance of catching things because the other persons immune system is constantly re activated various viruses?

And I believe then that there is the general wide spread confirmation between patients, researchers, and current findings that CFS/ME in itself as a chronic debiliting illness.

Is not a state of health which can simply be picked up by others in the way you catch a virus or bug from close social contact and the like. Right?

As opposed to an example of EBV, or even Aids in the case of intimate contact. These are illnesses which we know and understand. How it spreads, what the effects are, and what each case can present. And most importantly treatment.

 

[Hip]

Do we see a higher risk of viral myocarditis and other virus related death and or illness for those in close social contact with a CFS/ME person too?

According to the late Dr John Richardson, yes.

Richardson was a GP who studied ME/CFS and coxsackievirus B for nearly 50 years, and was a keen observationist who would often notice how once coxsackievirus B got into a family unit, it would spread from one family member to the next, causing perhaps ME/CFS in one person, a heart attack in the next, myocarditis in a third, pleurodynia in a fourth, and maybe some mysterious health problems in a fifth.

See the chapter "Familial Consequences of Viral Illness" in John Richardson's book Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.

 

[Martial]

According to the late Dr John Richardson, yes.

Richardson was a GP who studied ME/CFS and coxsackievirus B for nearly 50 years, and was a keen observationist who would often notice how once coxsackievirus B got into a family unit, it would spread from one family member to the next, causing perhaps ME/CFS in one person, a heart attack in the next, myocarditis in a third, pleurodynia in a fourth, and maybe some mysterious health problems in a fifth.

See the chapter "Familial Consequences of Viral Illness" in John Richardson's book Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.

Okay so certain viruses like coxsackievirus B have a higher chance of spreading with close family members and the like.

And sometimes this pathogen is known possibly trigger CFS/ME in certain individuals.

So is there any kind of treatment that is currebtly in place for enteroviruses such as CSV B?

Also most researchers and scientists on the M.E. /CFS front agree that something like CFS/ME is not easily contagious and some small chance it can posssibly spread in blood products/transfusion.

And sometimes cluster outbreaks in acute active stage. But other factors are at play too. A perfect storm of pre requisites to trigger it, maybe.

Although I also read some of those cases ended up being other identifiable infectious illness such as post Q fever.

Most importantly CFS/ME patients and loved ones should not worry and be paranoid about spreading illness or getting sick. Because its not likely to easily spread to others.

Its not like they ever felt the need to quarintine every single person who has contracted Me/CFS. And the obvious number of CFS/ ME people who had many people in their lives both social and romantic life who never became ill themselves.

One of the biggest diseases and burdens of all to me, is fear and paranoia. Because living under the control of those things is no healthy way to ever live your life.

And the biggest importance to always practice good sensiblilty and awareness. I say these last parts to mostly remind myself too.

 

[Seven7]

I am of the sub group with low natural killer cell nuMber and function. ( you can google NK cell dysfunction syndrome).
So I get low NK cause the herpes viruses to reactivate. So I struggled before w Parvo, coaxakie b2, hh6 and mono. They come and go based on how my immune system is Doing. I do not need test anymore to know which one is acting up.
Parvo= pain on joints is bad, specially on the hands.
Coaxakie b2= I get acid reflux, bumps in the roof of the mouth...
Hh6= random rashes and a lot of brain fog......
You get the drill.