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

[EddieB]

Same here! It’s been bad since about February-March, but the last two weeks have been HORRIBLE. So much pain and migraines. I’ve had a bunch of weird things come along with the tinnitus in my ears. Pain in my face, jaw, behind my eyes, in my temples and yeah my lymph nodes have been really bad maybe in the past month or so.

Yep, everything exactly the same...

 

[sometexan84]

@morgan_25 @EddieB

Y'all might want to look at the symptoms for Autonomic Nervous System Dysfunction aka Dysautonomia

Lower back pain is mentioned...

Here are symptoms of Autonomic Dysfunction, specifically Sympathetic Dominance....

These are my symptoms, very much showing low parasympathetic, high sympathetic autonomic dysfunction

• Heart palpitations, especially in bed
• Unable to relax
• Waking up to urinate
• Startles easily
• Dry Eyes (not often)
• Dilated pupils
• Dry mouth
• Increased Heart Rate (near Tachycardia)
• Digestive issues
• Weakness (not often)
• Excessive sweating
• Fatigue
• Sleep apnea
• Exercise Intolerance
• Claminess
• Anxiety
• Noise sensitivity
• Brain fog
• Numbness and tingling in hands and feet (but rare)
• Waking mid of night, unable to go back to sleep

 

[EddieB]

Y'all might want to look at the symptoms for Autonomic Nervous System Dysfunction aka Dysautonomia

I believe the EBV or other viruses are responsible for this. This is that angle that my doctors have been trying to treat me from, had some success, but it didn’t last.

Just had a phone appointment with GP. Doctor said doing an EBV PCR wouldn’t matter at this point, already convinced I have reactivation from symptoms and IgG levels.

 

[morgan_25]

@morgan_25 @EddieB

Y'all might want to look at the symptoms for Autonomic Nervous System Dysfunction aka Dysautonomia

Lower back pain is mentioned...

View attachment 38330


Here are symptoms of Autonomic Dysfunction, specifically Sympathetic Dominance....

View attachment 38331

These are my symptoms, very much showing low parasympathetic, high sympathetic autonomic dysfunction

• Heart palpitations, especially in bed
• Unable to relax
• Waking up to urinate
• Startles easily
• Dry Eyes (not often)
• Dilated pupils
• Dry mouth
• Increased Heart Rate (near Tachycardia)
• Digestive issues
• Weakness (not often)
• Excessive sweating
• Fatigue
• Sleep apnea
• Exercise Intolerance
• Claminess
• Anxiety
• Noise sensitivity
• Brain fog
• Numbness and tingling in hands and feet (but rare)
• Waking mid of night, unable to go back to sleep

View attachment 38332

I had a CFS friend diagnosed with this recently and questioned me about if I knew anything about it. So I just started doing some research on this maybe yesterday and I swear I pretty much have most of not all of these symptoms. She said her doctor believes that it is something that may be developed or caused by EBV, especially if it’s chronic.

 

[morgan_25]

Yep, everything exactly the same...

It’s crazy after years and years of having no answers, and all it took was finding people with the same condition because doctors apparently don’t know anything, at least the doctors that I have seen.

 

[morgan_25]

Yes, and I also did a bone marrow biopsy. Whatever it is, they don’t seem worried about it.

One of the hematologists I saw said it could indicate a viral infection...

A viral infection? Well duh! Only it seems like they don’t realize the severity of certain viral infections 🙄🤦🏼‍♀️

 

[morgan_25]

Yes. I was on an antibiotic for a short time after the surgery. When the symptoms returned, I went back on it, but no help.

And after the surgery, I was living on milk shakes, macaroni and cheese, mashed potatoes, and scrambled eggs.
So much for the dietary cures...

I don’t know about you, but I have never had any luck with changing my diet giving me any relief anyways.

 

[EddieB]

It’s crazy after years and years of having no answers, and all it took was finding people with the same condition because doctors apparently don’t know anything, at least the doctors that I have seen.

Absolutely. I’ve learned more here in the past few months than from years of seeing different doctors. They’re just not looking beyond the basics.

 

[morgan_25]

Absolutely. I’ve learned more here in the past few months than from years of seeing different doctors. They’re just not looking beyond the basics.

Absolutely, same here.

 

[sometexan84]

Absolutely. I’ve learned more here in the past few months than from years of seeing different doctors. They’re just not looking beyond the basics.

It’s crazy after years and years of having no answers, and all it took was finding people with the same condition because doctors apparently don’t know anything, at least the doctors that I have seen.

Yea, it's true.

It took me months to realize that I was on my own, that doctors wouldn't solve it, I had to find the solution. I now just use doctors helping me get tests done, and helping me get the drugs I need.

Took me a while to find this forum too.

My CFS was never severe, only had periods where I'd be bedridden for days. I'd say I'm about halfway to full recovery, I'm feeling better, and am super confident that I'm on the right path. When it's all said and done, I'll have a very detailed post w/ everything I've learned to hopefully help others.

I'll say this for now. Document everything. I have 16 pages of notes. Everyone on here is different, we all have different conditions, symptoms, and are all at different stages. You have to really dig deep and find out what's going on in your body. Document all the tests you think you need, and why. Each abnormal result will be another clue. Research what it all means, how it relates to you, rinse and repeat.

I think a pitfall I see often is people wanting a "CFS treatment" as fast as possible. And they try what other people have mentioned. In all likelihood, you'll need multiple treatments, and they all have to be perfect for exactly what you have. Or none of it will work.

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.

 

[morgan_25]

Yea, it's true.

It took me months to realize that I was on my own, that doctors wouldn't solve it, I had to find the solution. I now just use doctors helping me get tests done, and helping me get the drugs I need.

Took me a while to find this forum too.

My CFS was never severe, only had periods where I'd be bedridden for days. I'd say I'm about halfway to full recovery, I'm feeling better, and am super confident that I'm on the right path. When it's all said and done, I'll have a very detailed post w/ everything I've learned to hopefully help others.

I'll say this for now. Document everything. I have 16 pages of notes. Everyone on here is different, we all have different conditions, symptoms, and are all at different stages. You have to really dig deep and find out what's going on in your body. Document all the tests you think you need, and why. Each abnormal result will be another clue. Research what it all means, how it relates to you, rinse and repeat.

I think a pitfall I see often is people wanting a "CFS treatment" as fast as possible. And they try what other people have mentioned. In all likelihood, you'll need multiple treatments, and they all have to be perfect for exactly what you have. Or none of it will work.

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.

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.

 

[EddieB]

A viral infection? Well duh! Only it seems like they don’t realize the severity of certain viral infections 🙄🤦🏼‍♀️

No they don’t.

But in fairness, at least now, the doctors I’m seeing are convinced I’m suffering from a neurological/viral condition. They helped me get tested for entero virus, which was negative, but good to rule out. 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...

 

[godlovesatrier]

Someone's probably said this but do you mean high titers? Everyone on the planet has CMV and HHV-6 - I think 80% have EBV. As for high titers I sadly spent money on armin lab tests which may or may not have been any good. Also the reported test range was so dreadful that it's very hard to know what it even means.

Suffice to say I need to get all of mine redone at a cost of about £200 with IMD lab germany, which I have yet to do due to covid19.

 

[EddieB]

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.

Yeh, you definitely need to find someone that at least accepts the idea that viruses could be making you sick.
I’m hoping to get my immunologist to agree to a treatment plan, write scripts and do routine liver tests.

A Dr Podell has a less aggressive treatment plan with valcyclovir, that might be easier to convince a doctor to prescribe. Dr Lerner’s plan might scare them off...

 

[morgan_25]

No they don’t.

But in fairness, at least now, the doctors I’m seeing are convinced I’m suffering from a neurological/viral condition. They helped me get tested for entero virus, which was negative, but good to rule out. 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. This was at one of our big hospitals in Arizona, Barrow Institute and well as Mayo Clinic. That in itself made me lose a lot of faith in doctors, other than specific CFS specialist which apparently there are only 13 in the US.

 

[morgan_25]

Yeh, you definitely need to find someone that at least accepts the idea that viruses could be making you sick.
I’m hoping to get my immunologist to agree to a treatment plan, write scripts and do routine liver tests.

A Dr Podell has a less aggressive treatment plan with valcyclovir, that might be easier to convince a doctor to prescribe. Dr Lerner’s plan might scare them off...

Is your immunologists the same as like immunology and allergies? Whenever I search for immunology in my area, I only get results for immunology and allergy, as if they are part of the same thing.

I will have to check him out. So far, I have started reading Dr Lerner’s so once I’m finished with that I will be sure to check out Dr Podell.

 

[EddieB]

Someone's probably said this but do you mean high titers? Everyone on the planet has CMV and HHV-6 - I think 80% have EBV. As for high titers I sadly spent money on armin lab tests which may or may not have been any good. Also the reported test range was so dreadful that it's very hard to know what it even means.

Suffice to say I need to get all of mine redone at a cost of about £200 with IMD lab germany, which I have yet to do due to covid19.

I believe when referring to high titers, tithers, antibodies, it’s talking about the same thing.
Sorry, I don’t know what the armin test is for. But I get it, awful to pay for expensive test of no help.

 

[EddieB]

Is your immunologists the same as like immunology and allergies?

Yes. But this one was recommended by a friend, as she thinks outside the box.

Unfortunately, you have to weed through a number of practices before you find that certain someone that will try and help you. Example, my wife’s best doctor is her podiatrist, that treats her for everything...

 

[morgan_25]

Yes. But this one was recommended by a friend, as she thinks outside the box.

Unfortunately, you have to weed through a number of practices before you find that certain someone that will try and help you. Example, my wife’s best doctor is her podiatrist, that treats her for everything...

Yeah that definitely seems like what I will have to do. Just waiting on my new insurance to kick in and then I can see as many doctors as I need to.

 

[EddieB]

Yeah that definitely seems like what I will have to do. Just waiting on my new insurance to kick in and then I can see as many doctors as I need to.

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