Does anyone here NOT have EBV, HHV-6, or CMV?

[morgan_25]

In the meantime, I’m piling down lysine, viracid, selenium, zinc, etc. I have a jar of Lauricidin I may try too.

Do you feel like you have found some good supplements that are somewhat effective?

 

[EddieB]

Do you feel like you have found some good supplements that are somewhat effective?

Not really. I’ve been taking the lysine for months, it may or may not be helping. The selenium is new, so too soon to tell. The Lauricidin is supposed to be the bomb, but I’ll probably throw it up. I don’t do well with meds or supplements.

I wish there was something else that worked, cause I’ll probably have a hard time with the valcyclovir too.

 

[EddieB]

Also the reason why people say supplements don't work (I was one of them). They do help a lot if you know exactly why you're using them.

Is there something that I’m missing?

 

[morgan_25]

Not really. I’ve been taking the lysine for months, it may or may not be helping. The selenium is new, so too soon to tell. The Lauricidin is supposed to be the bomb, but I’ll probably throw it up. I don’t do well with meds or supplements.

I wish there was something else that worked, cause I’ll probably have a hard time with the valcyclovir too.

It kind of seems like people like us would have to take multiple different kinds of supplements for multiple different things while using probiotics and other things to help us absorb them better. I personally don’t know if I have that much energy for all that research to find out what works with what, what doesn’t work with what, how to take them, when to take them, etc.

 

[EddieB]

It kind of seems like people like us would have to take multiple different kinds of supplements for multiple different things while using probiotics and other things to help us absorb them better. I personally don’t know if I have that much energy for all that research to find out what works with what, what doesn’t work with what, how to take them, when to take them, etc.

It’s exhausting. I have boxes full of supplements that either didn’t help of made me sick. Yes, it would be nice to know what worked, and stick to it.

I’m certain my reflux, IBS, and gut problems are tied to it as well.

 

[morgan_25]

It’s exhausting. I have boxes full of supplements that either didn’t help of made me sick. Yes, it would be nice to know what worked, and stick to it.

I’m certain my reflux, IBS, and gut problems are tied to it as well.

I have been diagnosed with IBS-D in the past, but from some of the research I have done, it seems that autonomic dysfunctions, MCAS, HHV-6 and possibly some more can all be culprits of stomach or integral issues. I am also very sensitive to acidic things and any drinks that are carbonated.

 

[andyguitar]

It kind of seems like people like us would have to take multiple different kinds of supplements for multiple different things while using probiotics and other things to help us absorb them better.

Your best bet @morgan_25 is to start a new thread under "General Treatments". A title like "What are the best supplements to (and then describe what outcome you want ie improve digestion/pain relief/immunity and so on.

 

[morgan_25]

Your best bet @morgan_25 is to start a new thread under "General Treatments". A title like "What are the best supplements to (and then describe what outcome you want ie improve digestion/pain relief/immunity and so on.

That’s not necessary for me, it’s not really something I’m looking into currently. I already have multiple supplements I’m taking and suggested supplements for me to try in the future.

 

[sometexan84]

I was having a hard time even getting my doctor to order the tests that I was needing done and giving me meds. Of course at that time I didn’t know as much as I do now, but I had heard Valtrex was great, but she wouldn’t put me on anything without knowing why and when I would tell her she looked at me like I was crazy. That’s why I’m in between doctors right now. I am hoping to find one that will at least get me the medications I need.

Yea, I'm not sure if I got lucky, or what in finding mine. She's an "Internal Medicine Physician". "Functional Medicine" is also appropriately used for what she does. So that sort of doc might be something to look into.

Also, online reviews are really important. I've learned that great reviews online often correlate w/ good listening and communication w/ patients. Whereas medium or bad reviews can suggest the doc doesn't listen well. I actually haven't seen a super strong correlation between reviews and skills. But that's ok, you just need someone who will listen to you.

Mine is very nice, great communication. After a while, it was apparent to both of us that I knew more about what was going on w/ me then she did, and we're both ok w/ that. But it took me ordering labs on my own through walkinlab.com and showing her telling, abnormal results, which I do because I am in impatient and when I want to get tested for something, I want it ASAP. And it also took things like sharing my theories and backing those theories up w/ documentation.

 

[sometexan84]

It was suggested that I see an infectious disease specialist, but from what I understand, they are just as likely to ignore EBV, and with the covid virus, yeah right...

I was trying to get in to see an infectious disease doctor as well, but they had told me that their infectious disease doctors don’t know anything about EBV.

Actually, I was trying see an infectious disease doc for a while. My physician would send them referrals for me, and they kept getting denied.

I mean, at this point, I don't much care, nor do I think they'd be of much use to me. Anyway, that is my infectious disease story.

 

[EddieB]

Actually, I was trying see an infectious disease doc for a while. My physician would send them referrals for me, and they kept getting denied.

I mean, at this point, I don't much care, nor do I think they'd be of much use to me. Anyway, that is my infectious disease story.

Same here, I’d get referrals and they wouldn’t return my calls. Probably useless anyway.

 

[morgan_25]

Yea, I'm not sure if I got lucky, or what in finding mine. She's an "Internal Medicine Physician". "Functional Medicine" is also appropriately used for what she does. So that sort of doc might be something to look into.

Also, online reviews are really important. I've learned that great reviews online often correlate w/ good listening and communication w/ patients. Whereas medium or bad reviews can suggest the doc doesn't listen well. I actually haven't seen a super strong correlation between reviews and skills. But that's ok, you just need someone who will listen to you.

Mine is very nice, great communication. After a while, it was apparent to both of us that I knew more about what was going on w/ me then she did, and we're both ok w/ that. But it took me ordering labs on my own through walkinlab.com and showing her telling, abnormal results, which I do because I am in impatient and when I want to get tested for something, I want it ASAP. And it also took things like sharing my theories and backing those theories up w/ documentation.

I am so very impatient too. I am still waiting on my new insurance to kick in (Sorry if I already told you that lol) and it should at the beginning of August. So when that happens, I am hopefully going to find someone. I have my eye on a certain clinic in my area so I’m hoping to get in with them.

 

[sometexan84]

@EddieB

oooo, I'd love to see testing from an immunologist. If that's your current doc, you should ask about Natural Killer Cell Function testing, Neutrophil Function testing, and just like "Immune Cell Function" testing.

An immunologist should know the testing and what the results mean. Could 100% benefit you going forward to see abnormal results here. And I for one would LOVE to see test results for this and what the doc says about them.

It gets really difficult when testing for things like CD4+, CD8+, CD4:CD8 ratio, CD3+CD8+ suppressor, CD8+HLA-DR+, etc etc. (as far as like, what it means)

But if you learn about specific type of cell dysfunction going on, it would be a great clue.

 

[morgan_25]

Actually, I was trying see an infectious disease doc for a while. My physician would send them referrals for me, and they kept getting denied.

I mean, at this point, I don't much care, nor do I think they'd be of much use to me. Anyway, that is my infectious disease story.

That’s pretty much what kept happening with me until I finally called them. Because my crappy doctor never told me what happened-I don’t know if even they were aware of the referrals being denied-and I ended up calling the clinic where the infectious disease doctor was and they were like “We denied it a while ago you should have gotten a call from your doc” so annoying

 

[morgan_25]

@EddieB

oooo, I'd love to see testing from an immunologist. If that's your current doc, you should ask about Natural Killer Cell Function testing, Neutrophil Function testing, and just like "Immune Cell Function" testing.

An immunologist should know the testing and what the results mean. Could 100% benefit you going forward to see abnormal results here. And I for one would LOVE to see test results for this and what the doc says about them.

It gets really difficult when testing for things like CD4+, CD8+, CD4:CD8 ratio, CD3+CD8+ suppressor, CD8+HLA-DR+, etc etc. (as far as like, what it means)

But if you learn about specific type of cell dysfunction going on, it would be a great clue.

Wouldn’t it just be great if we could all afford to go see a CFS specialists? they are so knowledgeable about multiple viruses and every test that you would need to get done, at least that’s like the one in my area.

 

[andyguitar]

But if you learn about specific type of cell dysfunction going on, it would be a great clue.

th 17 cells are worth a look.

 

[EddieB]

If that's your current doc, you should ask about Natural Killer Cell Function testing, Neutrophil Function testing, and just like "Immune Cell Function" testing

th 17 cells are worth a look.

I’ll ask, thanks

 

[sometexan84]

Is there something that I’m missing?

Haha, I'm just saying. Like, ok, so early early on, my doctor put me on lots of supplements. Piles of them. Wasn't until later though that I learned about the specific things in my body that required attention and about what each type of medicine and supplement does to you. I ended up ditching a bunch of the supplements I was given initially.

I feel like I'm getting better faster, taking supplements w/ a specific purpose. Whereas, if I just took a bunch of stuff in hopes that it cured my CFS, I know I'd just end up being disappointed in the end and say, Well that shit didn't do anything.

Plus, knowing about all of it helps in different ways like... I'm on antibiotics right now. So I know I need to wait a couple hours after taking that until I can take my probiotics + vitamins. That sort of thing. Makes a difference.

 

[sometexan84]

Wouldn’t it just be great if we could all afford to go see a CFS specialists? they are so knowledgeable about multiple viruses and every test that you would need to get done, at least that’s like the one in my area.

The 1 CFS specialist in Texas died in 2018.

 

[morgan_25]

The 1 CFS specialist in Texas died in 2018.

Oh damn there’s one in Arizona in Flagstaff.