Has anyone tried the Pridgen protocol?

[Merida]

I just printed and read Dr. Pridgen et al. published study from last year. Wow. Makes a lot sense. I am taking this research to my infectious disease doc and plan to try it. I appreciate that I have structural issues that 'run' in my family. However, I recall my son's experience at age 5. Got EBV ( lab confirmed) at preschool, high fever 1 week. At 2 weeks he was getting well, then all H***broke loose - multiple neuro symptoms ( including extreme urinary frequency/ irritable bowel/ pain in fingers/toes, nighttime hunger, depression in a formerly happy little boy, sleep issues, and more). Thank you , Cort, Dr. Pridgen.

 

[Merida]

Follow up: Took my protocol to infectious disease/ CFS doc. Actually his P.A., as he has been on medical leave. Response: Not willing to try any treatment for which there are no abnormal lab results. Worried about losing her license. Any ideas?????

 

[BarbaraB]

Follow up: Took my protocol to infectious disease/ CFS doc. Actually his P.A., as he has been on medical leave. Response: Not willing to try any treatment for which there are no abnormal lab results. Worried about losing her license. Any ideas?????

My idea
No conventional doctor will follow this protocol. Where are you located? You need a functional medicine or other unconventional doctor.
If it were me I would buy the meds on-line and try it myself. It is a very simple inexpensive protocol. According to the reviews, you will know in a month if its working.

 

[Elizabeth Livingston]

Not yet!

 

[Not dead yet!]

Follow up: Took my protocol to infectious disease/ CFS doc. Actually his P.A., as he has been on medical leave. Response: Not willing to try any treatment for which there are no abnormal lab results. Worried about losing her license. Any ideas?????

That's just silly. My doc gives out Valtrex to anyone over a certain age just because they feel "unwell." And my mother in law had an antiviral cream she applied to the inner lips because she was bothered by constant simplex recurrences.

I got Valtrex at a younger age from my doc because my IgG was off the scale, which he interprets as reactivation of the virus. Actually several of them were very high, but highest were EBV and CMV.

However, the PA is not really the doctor. In my experience they are willing to help you more than the doctor, but this one sounds like a bad apple. She just denied you valid medical care. She is by law required to give you help. Anyway, what is it? Celebrex and Valtrex? Nothing serious about that. She sounds young and dumb.

The current definition of ME/CFS in the medical codes specifically mentions that it's the after effect of a viral infection and includes unusual inflammation. So they should get no problems with medical coding or diagnosis. Did your doctor (who oversees the PA) write ME/CFS in your diagnoses yet? Because if so, any antiviral should not raise eyebrows. And neither should Celebrex.

You can get all Will E. Coyote with her too... Gee, dear, it looks like I have arthritis... guess you'll have to get me celebrex. Oh gee shucks, look what the medical code says about ME/CFS.... the new code says it's viral... maybe I should be on Valtrex. (note that Famciclovir, Valtrex and Zovirax all have the same active ingredient, but the absorption rate is different).

It's absurd that doctors make you do this stuff to get what you already know you need. And neither of those drugs is at all risky.

 

[JES]

That's just silly. My doc gives out Valtrex to anyone over a certain age just because they feel "unwell." And my mother in law had an antiviral cream she applied to the inner lips because she was bothered by constant simplex recurrences.

I'm afraid it's not just silliness. Famous CFS doctor, Sarah Myhill, was stripped of her right to prescribe Valtrex off label, read more here. From my understanding, this is happening all over Europe to doctors that attempt to treat a large patient group with off-label use of medications, so her worry about losing her license is probably justified.

The best way to get Valtrex in the absence of finding a doctor to prescribe it is probably to order it from one of the more well-established online pharmacies. This is what many CFS/ME patients are already doing, i.e. self-treating by ordering medications online that they wouldn't otherwise get access to.

 

[Not dead yet!]

I'm afraid it's not just silliness. Famous CFS doctor, Sarah Myhill, was stripped of her right to prescribe Valtrex off label, read more here. From my understanding, this is happening all over Europe to doctors that attempt to treat a large patient group with off-label use of medications, so her worry about losing her license is probably justified.

The best way to get Valtrex in the absence of finding a doctor to prescribe it is probably to order it from one of the more well-established online pharmacies. This is what many CFS/ME patients are already doing, i.e. self-treating by ordering medications online that they wouldn't otherwise get access to.

The world has gone mad when doctors can be punished for prescribing what they feel is best for their patients, yet nobody punishes them when they give out antidepressants like candy, regardless of the known inefficacy of the treatment.

And it's gone mad when people are routinely berated for doing what you're describing... in their own quest for just basic functioning, patients are told that online pharmacies are "dangerous." Yet the feckless people who declare such things aren't willing to make it safer for people to get what they need form actual doctors. If someone goes off label, wouldn't they be safer with the help of an MD? That's the madness.

 

[Zapped]

My idea
No conventional doctor will follow this protocol. Where are you located? You need a functional medicine or other unconventional doctor.
If it were me I would buy the meds on-line and try it myself. It is a very simple inexpensive protocol. According to the reviews, you will know in a month if its working.

That is exactly what I did, about 45 days ago. So far, so good but I’m aware any antiviral protocol takes time. I suppose I could fudge a little and say it seems to be working but that’s more optimistic outlook than pure fact.

It's not that consequential, either way, IMO. Go for it!

 

[qkcam]

That is exactly what I did, about 45 days ago. So far, so good but I’m aware any antiviral protocol takes time. I suppose I could fudge a little and say it seems to be working but that’s more optimistic outlook than pure fact.

It's not that consequential, either way, IMO. Go for it!

can you share what the protocol is? and what you are taking with dosage, etc? how are you feeling with it?
i tried celebrex and it made me really exhausted (more than usual)
thank you

 

[Zapped]

can you share what the protocol is? and what you are taking with dosage, etc? how are you feeling with it?
i tried celebrex and it made me really exhausted (more than usual)
thank you

It’s really simple, a combination of Celebrex and Famcyclovir (Famvir). Usually start with basic doses, i.e. inn the amount the pharmacy sells, 250mg each p, once or twice a day

 

[Not dead yet!]

It’s really simple, a combination of Celebrex and Famcyclovir (Famvir). Usually start with basic doses, i.e. inn the amount the pharmacy sells, 250mg each p, once or twice a day

That's what I take, but not for ME/CFS reasons alone.

Celebrex: because I have OA.. I started taking it more than a decade ago after Vioxx was removed from the market... I passed from Vioxx to Bextra to Celebrex (all of these are COX-2 inhibitors... claims are made about Turmeric also being a COX-2 inhibitor) because it stopped chronic pain back then, later it wasn't enough without opiates. But after I became gluten free in my diet, the opiates weren't necessary anymore, and by then I'd had the OA diagnosis (which was 30 years overdue), so Celebrex stayed.

Valtrex is what I take, which if I remember correctly, is a weaker Famvir, and I go in cycles, the first cycle was 6 months, but my tolerance ran out at 4 months, so we cut back to 3 months on, and 2-3 months off based on how I'm feeling. It started when my immune reactions to common herpes type viruses was shown to be too high (such as, only one example, IgG multiple times higher than the upper limit for EBV, aka "mono"). One of the medical coding standards (not sure if it's old or the new one) mentioned that treatment as a possible choice. But it's been a while since I looked at med coding, so, if interested, you might have to search that up.

Back to the OP posts 1 and 2... I underlined the lab results that led me to take Valtrex.

It might explain why I didn't become completely bedridden. I"ve always been grateful that my case isn't as bad as others. However my function was terrible (chairbound most days) until the gluten free aspect was added. I now leave the house on nearly every day, but recently I gave a short, 30 minute speech and the trip out, the setup, and the speech, then returning home... that was nearly too much and afterward I spent the rest of the day sleeping or half awake... it set off brain fog for a few days, but I was mobile. So I won't call it a panacea, but the improvement from chairbound to "able to give a 30 minute speech with only a minor crash" is huge.

 

[Zapped]

The protocol overall sounds like you were better off taking it than not, even with adjustments.

 

[qkcam]

thanks for the dosing info. I have famvir in 500mg at 2x a day.. and celebrex at only 100mg, I would like to increase the celebrex but it makes me sleepy..and even if i take it at nite i still feel the sleepy effects the next day.

anyone else experience this and how long does it last? thank you

 

[Zapped]

FYI, I take 200 mg Celebrex and 250 mg Famvir, 1 x daily. I don’t notice their effect or how long they last each day. It just seems to be working. I have tried 2x daily on occasion but with same effect. So, I just keep the dose low. I take so many other pills, about 20 supplements 2x daily and 5 x 2 daily for CAD (coronary heart disease), there may be some interactions of which I’m not aware???

Funny, but professional information says Famvir (Famciclovir) is to relieve symptoms of herpes simplex and does not kill the virus, only stops it’s replication! I don’t know why it works in combo with Celebrex?

All in all, this researched protocol keeps me up and about, at about 30%-50% on the sofa ~3 days a week, walk~10” daily, and out for
drive/eat out a couple times weekly. I’ve really gotten lax on exercises and stretching for 5-10” daily but I used to add that to daily routine. The other 50%-70% (sometimes) is due to the limitations of MECFS = must go slow and rest or the percentages in my favor
decrease.

I hope this summary helps with planning your ‘comfort zone’ rx intake and overall activities. I consider myself in the moderate, not severe and not minimal category. It’s definitely limiting but has been worse in years past with more activity. It’s otherwise progressive, with caution. BTW, I gave up using docs a few years back, except for practical cardiology for heart. The rest is from DIY research over ~30 years.

 

[BarbaraB]

I haven't figured out this posting and picture business yet, so I can't who is posting what.
Hi Zapped and Not Dead Yet or anyone else I missed.
Which no script pharmacy did you use?
Need to buy some antibiotics for my other son who has PANDAS. Docs acting like its a controlled substance.
P.S. I read about Singular 10mg being good for brain fog. Seems to be helping my very sick son withCFS/ME stay more alert.

 

[BarbaraB]

Got the photo figured out

 

[Zapped]

Got the photo figured out

Do a search at the upper rright corner above your name for ‘online pharmacies.’ You’ll get referred to a list. Some are active and others gone. A fallback is ‘Alldaychemist.com.’

 

[Kahlor]

can you share what the protocol is? and what you are taking with dosage, etc? how are you feeling with it?
i tried celebrex and it made me really exhausted (more than usual)
thank you

Yes, it makes me feel exhausted too. Is there a way round this anyone?

 

[Helen Schoenfeld]

I have been on the Pridgen Protocol for about 4 months now and it's bringing down my HSV levels. I don't feel any better yet but I'm greatly encouraged by the labs. I don't like being on these meds, especially not celecoxib because it interferes with the protective mucus lining of the stomach and blood vessels. This is why it's been implicated with heart attacks, but I also take deglycerized licorice, but that doesn't help the blood vessels. The dosage for Valtrex is double what I used to take to keep the HSV at bay, but it's necessary to go after the critter in the dorsal root ganglia, not just to keep it from erupting. I've just learned that omeprazole also antiviral qualities so I'm going to ask my practitioner if he thinks that it would work as well as celecoxib. He's a biochemist as well as a naturopath, so I trust his judgment far more than if he was a M.D..