Has anyone tried Dr VanElzakker's treatment protocol? (Famvir, Ibudilast, VNS, Mestinon, Celebrex)

[Jesse2233]

At the end of his seminal vagus nerve infection hypothesis paper, Dr VanElzakker puts forward a potential treatment protocol (1). I was wondering if anyone here has deliberately followed it, especially with all treatments done concurrently.

Note: Dr VanElzakker is a researcher not a clinician. He makes clear that both his hypothesis and treatment proposal are theoretical.

• Famvir - Rodent studies have shown that the antiviral Famvir (famciclovir) penetrates peripheral nerve ganglia better than other antivirals, which makes it an attractive option if symptoms are driven by latent or active herpesvirus infection of peripheral vagus ganglia.

• lbudilast - An anti-inflammatory drug used mainly in Japan for asthma, stroke, and treatment of neuropathic pain as an adjunct with opioids. Ibudilast crosses the blood-brain barrier and suppresses glial cell activation.

• Vagus nerve stimulation (VNS) - involves delivering electrical impulses to the vagus nerve via a medical device. Use is currently reserved as an adjunctive treatment for certain types of intractable epilepsy and treatment-resistant depression. Vagus nerve stimulation promotes the anti-inflammatory effects of the motor (efferent) vagus nerve. In the case of the vagus nerve infection hypothesis, it may also regulate exaggerated sensory (afferent) signaling.

• Mestinon (Pyridostigmine) - a drug that blocks the enzymatic breakdown of acetylcholine, which is the primary neurotransmitter of the vagus nerve, especially the parasympathetic/ motor/ efferent branch. Mestinon is frequently prescribed for POTS, especially to improve tachycardia, and can work synergistically with vagus nerve stimulation.

• Celebrex - Celebrex is a COX2 inhibitor, which blocks an enzyme that is part of the production of prostaglandins. When glial cells become activated, they produce neuroexcitatory mediators - molecules that turn on nerve cells. According to the vagus nerve infection hypothesis, infection of vagus nerve ganglia causes activation of associated glial cells, which in turn overly-excite the vagus nerve via these mediators. Prostaglandins are one of these neuroexcitatory mediators, along with proinflammatory cytokines, nitric oxide, reactive oxygen species, glutamate, and nerve growth factor. Beside the antiinflammatory mechanism of COX2 inhibition, herpesviruses upregulate COX2 to aid with its own replication.

Credit to MEPedia for collating the above.

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Less accessible options...

• Ampligen - a drug that stimulates the production of natural interferon
  
  
• Anesthetization of the vagus nerve - to temporarily disrupt cytokine signaling and microglial brain inflammation
  
  
• Vagotomy - severing of the vagus nerve to permanently disrupt cytokine signaling and microglial brain inflammation

 

[BadBadBear]

I am on Famvir, Celebrex, and Mestonin but I didn't realize that this is Dr. VE's protocol. I have not been on Famvir and Celebrex for very long, only two months.

I feel like his vagus infection theory totally accounts for the course of my disease.

 

[Jesse2233]

I am on Famvir, Celebrex, and Mestonin but I didn't realize that this is Dr. VE's protocol. I have not been on Famvir and Celebrex for very long, only two months.

I feel like his vagus infection theory totally accounts for the course of my disease.

Interesting! And you’ve been having some good results recently right?

Ever tried adding in a microglial inhibitor such as LDN or Ibudilast?

 

[Ema]

I've basically done a variation of that protocol...though I tended to use ibuprofen more than Celebrex and huperzine A over Mestinon. I took ibudilast for a looong time. For vagal nerve stimulation, I do gargling and singing/chanting.

 

[Jesse2233]

I've basically done a variation of that protocol...though I tended to use ibuprofen more than Celebrex and huperzine A over Mestinon. I took ibudilast for a looong time. For vagal nerve stimulation, I do gargling and singing/chanting.

How’d it work for you?

 

[Ema]

How’d it work for you?

Well, it didn't cure me. But it didn't do me any harm either.

I always thought I had low acetylcholine levels but I've been thinking the opposite lately...because when I take choline or cholinesterase inhibitors, I tend to get really stiff neck and jaw muscles. This seems like an excess of cholinergic activity possibly but I'm not sure. Either way, it wasn't a good fit.

I gave up on the AVs after years of high dose Valtrex, plus Valcyte and cidofovir IVs after a lack of improvement.

But I still take quite a lot of ibuprofen and sing/chant daily.

 

[BadBadBear]

Interesting! And you’ve been having some good results recently right?

Ever tried adding in a microglial inhibitor such as LDN or Ibudilast?

I looked at Ibudilast today. . I have not tried LDN yet. Its early in the trial for me, but Mestonin really helps. I take a tiny quarter tab dose QID (prescribed a full tab per dose). It bothers my gut if I go any higher. The small dose is enough to make a positive difference.

I should start seeing real improvement by Spring if the antivirals work. I was able to tolerate a errands and grocery shopping trip yesterday and some light recreation this afternoon with no PEM or crash.

Like Ema, I also sing, and if I am well enough, take a short ride on my horse. I have read some interesting info about riding a horse being vagal stimulating due to the large electomagnetic field a horses heart generates, and I am glad that I am starting to be able to ride a little again (easier for me to take a walk on my horses legs than my own).

 

[Sushi]

I was wondering if anyone here has deliberately followed it, especially with all treatments done concurrently.

I alluded to this issue on another thread yesterday: I think that the success of protocols like this may be related to your autonomic profile. I test as parasympathetic dominant (high vagal activation).

Famvir

I did not tolerate famvir at all--probably not because of autonomic issues though.

Mestinon

Didn't tolerate--made me much more tired.

Celebrex

Didn't tolerate due to heart rhythm issues.

My guess is that those who are sympathetic dominant (that is the majority of those with dysatonomia) would do better with some of these therapies.

 

[BadBadBear]

That is interesting, @Sushi.. Does that high tone affect BP, pulse, etc?

I am definitely sympathetic dominant. Also my main issues seem rooted in EBV so my case is not as complex or severe as many PWME.

 

[Sushi]

Does that high tone affect BP, pulse, etc?

Yes, it does. I have OI and without meds would have POTS. Interestingly, because of the high vagal tone the drug I did best with was strattera--norepinephrine re-uptake inhibitor.

I am definitely sympathetic dominant. Also my main issues seem rooted in EBV so my case is not as complex or severe as many PWME.

Glad to hear that you aren't as complex and severe. Are you considering vagal stimulation? I don't think that Dr VanElzakker has broken down response in terms of autonomic testing--at least that I have heard of.

 

[BadBadBear]

@Sushi - Thank you, I have not tried VNS. I am very open to the idea and will be researching my options.

 

[dreampop]

I've basically done a variation of that protocol...though I tended to use ibuprofen more than Celebrex and huperzine A over Mestinon. I took ibudilast for a looong time. For vagal nerve stimulation, I do gargling and singing/chanting.

Where did you get ibudilast, I thought it was only available in Japan? IIt always looked like a perfect drug for ME/CFS, but then I'd thought I'd hear about it working by now, and I never have.

 

[Ema]

Where did you get ibudilast, I thought it was only available in Japan? IIt always looked like a perfect drug for ME/CFS, but then I'd thought I'd hear about it working by now, and I never have.

Mimaki and/or IRC

 

[dreamydays]

Ok I have tried most of these:

Famvir: Took for a year, made me much worse overall with no benefits

Celebrex: Have taken numerous times during famvir trial with no effect at all

Mestinon: Take occasionally with next to no real effect. May improve blood pressure slightly.

Ibudilast: Absolutely no effect, may as well be a sugar pill. Bought from mimaki.

Overall a complete failure in my experience.

 

[Mary]

@Jesse2233 - did you see this thread about Skip Pridgen's protocol which uses Famvir and Celebrex, and possibly an antidepressant? http://forums.phoenixrising.me/inde...-on-hr-famvir-celebrex-dr-skip-pridgen.56708/

He believes that FM and possibly ME/CFS are due to HSV-1.

 

[godlovesatrier]

@dreamydays just saw your comments about famvir. Did you experience a worsening or symptoms in the first few weeks of famvir? Bad brainfog that improved with time or tonsillitis pain that again improved with more time on famvir?

My experience is that famvir ameliorates my fatigue when I take it. In the first 16 days I experienced not only extremely bad brain fog and some unpleasant side effects neurocognitively but also very bad tonsillitis for 4 days with deep pain in the tonsil. It's completely gone now and all the swelling in my neck and throat which was background but there has gone too. Also my persistent sore throats gone too.

I'm still hoping famvir has more long term benefits for me. I've only been on it 4 to 6 weeks and done some valtrex trials too so early days for me.

Thanks.

 

[dreamydays]

Yes first day, so if you get bad first day i would stop straight away and not assume it’s ‘herx’

 

[godlovesatrier]

I have a theory now based on my medical history that when I take famvir what's happening is that the drug is stimulating my immune system because it sort of goes into overdrive. Hence why I get bad insomnia from the drug. Usually 500mg to induce insomnia. This lasts about a week and then there's a crash and then after that I just seem to suffer from terrible brain fog and fatigue that only seems to get worse and worse.

I don't think it works for me. It also leaves me with higher hrv and agitation/anxiety. Which isn't good. It could be a filler but European famvir costs a fortune so that's out.

Thanks for your experience. I've tried it 4 times now so I know this isn't a one off.

It could well be a productive herx but I haven't got 6 months of time off work to try it and see.

 

[dreamydays]

It doesn’t work, ibudulast and celebrex do nothing. Famvir is not dangerous generally but sent me from moderate to severe so it can be. No one gets better from it at any statistically significant way or it would be all over here for 15 years! VNS could be interesting and Mestinon doesn’t help me but works for some. I don’t post often because I’m ill and focus is elsewhere but I’ve tried the most things probably and sadly only a few things help.