Why did antivirals (valcyte, etc) for SEIDs fail?

[Judee]

I always mention that when I'm well enough to exert myself in any way, I have some kind of crash that feels like something is going after my heart.

This is me too. I have mentioned this to several doctors over the years but it is not taken seriously since, as you say, blood tests and stress test/EKG come back normal. One doctor even screamed at me when I said I had "heart pain." He said he was sure he had some friends that had experienced heart attacks who could tell me what true heart pain felt like.

Also when he was titrating me up on thyroid meds I realized that the meds made me more "heart tired." My description for it. They must have been speeding my heart up too much and making it work harder.

It's like some of the times my crash fatigue actually originates from my heart especially when I have been pushing myself to do too much. I think and fear that whatever caused the ME/CFS, is causing some damage to my heart as well.

Is that how you feel, @lukesirde?

 

[lukesirde]

This is me too. I have mentioned this to several doctors over the years but it is not taken seriously since, as you say, blood tests and stress test/EKG come back normal. One doctor even screamed at me when I said I had "heart pain." He said he was sure he had some friends that had experienced heart attacks who could tell me what true heart pain felt like.

Also when he was titrating me up on thyroid meds I realized that the meds made me more "heart tired." My description for it. They must have been speeding my heart up too much and making it work harder.

It's like some of the times my crash fatigue actually originates from my heart especially when I have been pushing myself to do to much. I think and fear that whatever caused the ME/CFS, is causing some damage to my heart as well.

Is that how you feel, @lukesirde?

Exactly this!!
I'm so glad I'm not alone, but it is very upsetting knowing there are others suffering so horribly.
I'll perhaps reply in more detail when o have a bit more energy.
Best wishes.

 

[gbells]

This is me too. I have mentioned this to several doctors over the years but it is not taken seriously since, as you say, blood tests and stress test/EKG come back normal. One doctor even screamed at me when I said I had "heart pain." He said he was sure he had some friends that had experienced heart attacks who could tell me what true heart pain felt like.

Also when he was titrating me up on thyroid meds I realized that the meds made me more "heart tired." My description for it. They must have been speeding my heart up too much and making it work harder.

It's like some of the times my crash fatigue actually originates from my heart especially when I have been pushing myself to do too much. I think and fear that whatever caused the ME/CFS, is causing some damage to my heart as well.

Is that how you feel, @lukesirde?

Dr. Lehrner's research showed that viral infection of SEIDs patients caused heart muscle damage and improved with antivirals.

Sinus tachycardias decreased and abnormal cardiac wall motion improved. Serum antibody titers to EBV VCA IgM decreased. Patients resumed normal activities.

http://iv.iiarjournals.org/content/21/5/707.long
Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Valacyclovir treatment in
Epstein-Barr virus subset chronic fatigue syndrome: thirty-six months follow-up.
In Vivo. 2007 Sep-Oct;21(5):707-13. PubMed PMID: 18019402.

 

[lukesirde]

Dr. Lehrner's research showed that viral infection of SEIDs patients caused heart muscle damage and improved with antivirals.



http://iv.iiarjournals.org/content/21/5/707.long
Lerner AM, Beqaj SH, Deeter RG, Fitzgerald JT. Valacyclovir treatment in
Epstein-Barr virus subset chronic fatigue syndrome: thirty-six months follow-up.
In Vivo. 2007 Sep-Oct;21(5):707-13. PubMed PMID: 18019402.

I've lost count of the amount of times I've asked to trial antivirals or even certain antibiotics. Heck, they won't even test for 80% of what I ask for!!
I'm in the UK, and I have very little hope for any level of treatment. Feeling very lost at the mo.

 

[gbells]

I've lost count of the amount of times I've asked to trial antivirals or even certain antibiotics. Heck, they won't even test for 80% of what I ask for!!
I'm in the UK, and I have very little hope for any level of treatment. Feeling very lost at the mo.

Antivirals fell out of favor in the US too after Montoya's study didn't get good results. They aren't accepted for SEIDs though patients can get them if their doctor diagnoses another disorder.

 

[Hip]

Antivirals fell out of favor in the US too after Montoya's study didn't get good results.

Where did you read that, may I ask?

To my knowledge, ME/CFS doctors are still using antivirals. I know for sure that Dr Chia continues to use antiviral/immunomodulators such as oxymatrine, Epivir, tenofovir and if interferon beta to treat enterovirus ME/CFS.

I have not got any recent updates regarding the treatments used by the herpesvirus-oriented ME/CFS doctors such as Peterson, Klimas, Kogelnik, Kaufman, Chheda, etc, but I've certainly not heard any statements saying that they no longer use antivirals such as Ampligen, Valcyte, cidofovir.

 

[gbells]

Where did you read that, may I ask?

To my knowledge, ME/CFS doctors are still using antivirals. I know for sure that Dr Chia continues to use antiviral/immunomodulators such as oxymatrine, Epivir, tenofovir and if interferon beta to treat enterovirus ME/CFS.

I have not got any recent updates regarding the treatments used by the herpesvirus-oriented ME/CFS doctors such as Peterson, Klimas, Kogelnik, Kaufman, Chheda, etc, but I've certainly not heard any statements saying that they no longer use antivirals such as Ampligen, Valcyte, cidofovir.

Aetna, Clinical Bulletin, Chronic Fatigue Syndrome, accessed 10/12/2019
http://www.aetna.com/cpb/medical/data/300_399/0369.html

Aetna considers the following laboratory tests and procedures experimental and investigational for the diagnosis or treatment of members with CFS. The peer-reviewed medical literature does not support their value in the diagnosis or treatment of individuals with CFS:

...Viral serologies including but not limited to:

1. Coxsackie virus serology
2. Enterovirus serology
3. Herpes virus serologies (e.g., cytomegalovirus, Epstein Barr virus, human herpes virus-6)
4. Retrovirus serologies (except HIV)

...The National Institute for Health and Clinical Excellence’s guideline on “Chronic fatigue syndrome/myalgicencephalomyelitis (or encephalopathy): Diagnosis and management of CFS/ME in adults and children” (NICE, 2007) stated that the following drugs should not be used for the treatment of CFS/ME:

• Anti-viral agents

So if patients are getting these treatments either the doctor is diagnosing something else or they are self paying because insurance won't cover them.

 

[Hip]

I know in the UK that NICE say that antiviral agents are not to be used. That's why it's only US doctors who use them, not UK doctors. Dr Myhill was using Valtrex in her practice, but she was forced to stop.

I am not familiar with Aetna. What do they do?

I know @Learner1 was prescribed Valcyte not so long ago. Perhaps @Learner1 you might like to comment on whether doctors can still prescribe Valcyte for ME/CFS and get insurance to pay for it.

 

[Galixie]

I am not familiar with Aetna. What do they do?

They are a large insurance company with such a large pool of members that they have a outsized influence on our health care by dictating what treatments they will or won't cover. The influence by insurance companies on medical practices is almost always done to cut cost/increase profits for the insurance companies. It's a major problem with healthcare in America currently.

It works like this: A person gets a job. Their workplace signs up all their workers under a group insurance policy. The policy is run by one of these mega-insurance companies. The policy lists what the insurance company will pay for and what they won't. The worker has to take the deal or leave it, because they have no bargaining power to change it. The policy also states things like deductibles and co-pays. Those are dollar amounts that have to be paid by the worker (on top of their monthly premium deducted from their paycheck) even if the medical care is covered by the insurance policy.

Frequently the monthly cost of paying for insurance is so expensive (hundreds of dollars per month) that the worker can't actually afford to go to a doctor (because they can't afford the co-pay). And, because the insurance companies have so much leverage, they are able to choose to decline coverage for expensive treatments.

The insurance companies will tell you that they aren't denying you the treatment you need, because you are free to get the treatment and pay for it yourself. But after you've sunk thousands of dollars into insurance coverage that doesn't cover your needs, that statement tends to sound a bit hollow.

One of my friends just got a letter from her insurance company telling her that they are only going to pay for half of a treatment she needs, even though they had been covering the full amount of that treatment until now.

 

[gbells]

Frequently the monthly cost of paying for insurance is so expensive (hundreds of dollars per month) that the worker can't actually afford to go to a doctor (because they can't afford the co-pay). And, because the insurance companies have so much leverage, they are able to choose to decline coverage for expensive treatments.

This isn't really true. It isn't the cost. Insurance companies require that all treatments have some level of evidence for reimbursement. Lots of drugs have unknown mechanisms of action but have outcomes studies that show effectiveness. Anything without evidence or with negative studies that suggest a therapy doesn't work is deemed experimental and their policies don't allow for experimental treatment.

In the case of antivirals for SEIDs both Montoya and Lerner's own studies failed to show effectiveness so it was concluded that they didn't work well enough to be used.

 

[olegsel]

I have perpetually high EBV antibodies, including the one that is only supposed to spike when you are first exposed to the virus. I took acyclovir in 2015. I can't remember for how long. I had zero symptom improvement and repeated antibody testing showed no reduction in antibodies.

I am in no way disparaging the use of antivirals, because there are some who benefit from them. I'm just speculating about why they didn't work for me.

Waltrex did not help me. Famvir brought harm.
Valcyte was effective. But I took it only 1.5 months.

 

[Galixie]

This isn't really true. It isn't the cost. Insurance companies require that all treatments have some level of evidence for reimbursement. Lots of drugs have unknown mechanisms of action but have outcomes studies that show effectiveness. Anything without evidence or with negative studies that suggest a therapy doesn't work is deemed experimental and their policies don't allow for experimental treatment.

In the case of antivirals for SEIDs both Montoya and Lerner's own studies failed to show effectiveness so it was concluded that they didn't work well enough to be used.

I beg to differ. The example I gave about a friend of mine getting a letter telling her that her insurance was not going to pay as much as it used to for her treatment was based solely on the cost of the medication. It is a medication that the insurance company does cover and has deemed effective. They've simply decided it's too expensive and they want to limit its use to reduce their own cost.

 

[southwestforests]

I feel like such an idiot, had to Google what SEID means so I could understand what this thread would be about.
And it appears that SEID itself is why I had to do that about SEID ...
Ain't life something.

But a burst of insight into SEID's physiological substrate came only months ago when Stanford neuroradiologist Mike Zeineh, MD, PhD, working with patients from Montoya's registry, found that they shared a pattern of white-matter loss in specific parts of the brain. The discovery drew a great deal of attention in the press as well as the CFS community. (See our news release about that study for details.)

https://scopeblog.stanford.edu/2015...-its-blood-chemistry-signature-is-a-giveaway/

 

[gbells]

SEIDs is the new name for CFS to get healthcare professionals to take it more seriously now the NIH recognizes it as a physical disorder and not a mental disease.

 

[southwestforests]

SEIDs is the new name for CFS to get healthcare professionals to take it more seriously now the NIH recognizes it as a physical disorder and not a mental disease.

It indeed needs all the help it can get.
During the several years, 2009 to 2015, that I was Facebook before they kicked me off more times than I was willing to put up with, I was really active in CFS and fibromyalgia groups there and also kept track of what was happening, what little was happening, in science about it, at least what science was not behind paywalls.

In the course of the last couple years my mind just flat won't, maybe even can't, do that any more.

 

[Hip]

SEIDs is the new name for CFS to get healthcare professionals to take it more seriously now the NIH recognizes it as a physical disorder and not a mental disease.

SEID is a name confined to the dustbin of history, because nobody has adopted it. Just like other non-adopted names like CFIDS (chronic fatigue and immune dysfunction syndrome), and PVFS (post-viral fatigue syndrome).

The name CFS should also be eventually discontinued, because this name has trivialized the illness.

The original name of myalgic encephalomyelitis is still the best, as this name makes the disease sound as serious as it is.

 

[olegsel]

The main thing is not the name of the disease. An accurate understanding of its causes and the possibility of stopping the disease.
myalgic encephalitis is a more cumulative name for the condition

 

[gbells]

SEID is a name confined to the dustbin of history, because nobody has adopted it. Just like other non-adopted names like CFIDS (chronic fatigue and immune dysfunction syndrome), and PVFS (post-viral fatigue syndrome).

The name CFS should also be eventually discontinued, because this name has trivialized the illness.

The original name of myalgic encephalomyelitis is still the best, as this name makes the disease sound as serious as it is.

Well I learned something. Thanks HIP.
https://me-pedia.org/wiki/Systemic_Exertion_Intolerance_Disease

I'll switch to calling it ME.
https://me-pedia.org/wiki/Myalgic_encephalomyelitis

 

[Learner1]

I know @Learner1 was prescribed Valcyte not so long ago. Perhaps @Learner1 you might like to comment on whether doctors can still prescribe Valcyte for ME/CFS and get insurance to pay for it.

I was originally prescribed Valtrex for high CNV and HHV6 antibodies. My insurance was ok with a low dose, but balked at double the dose, which my doctor wanted me on. Then, my new a doctor, a top ME/CFS specialist, found that I had chronic, reactivated EBV, that everyone else had missed, as he did a PCR test.

He then prescribed generic Valcyte, 2 450mg tablets twice a day, which somehow, my insurance covered, even though they said they were saving me $3,000 a month which was more than the generic Valtrex. I am extremely thankful. Within 30 days, my significant brain fog cleared. I stayed on it for 20 months, the last 6 at 900mg per day, and my doctor had me stop it only after I had 4 negative EBV PCRs over a 9 month period - he's very experienced with EBV and took it quite seriously. Acyclovir would not be as effective.

I also had an immunodeficiency and was put on LDN at the same time as Valcyte. Three months later, I started IVIG, which I am still on, these days for the autoimmunity triggered by the EBV. I believe people who aren't helped by antivirals either don't have a virus that that antiviral helps, they have other infections the antivural doesn't treat, or their immune system is too dysfunctional, and they don't stay well afterwards as they got off them too soon.

As for names, no one in my part of the world has heard of ME or SEID. They do understand ME/CFS or chronic fatigue syndrome, unfortunately.