What is there to try next?

nryanh94

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Did 3 months Valtrex (kidney levels elevated)
6 months Famvir (nothing)
Been on Valcyte for 1 month
LDN for about a year (nothing)
Curcumin fro about a year (nothing)
Memantine for about a month (stopped working)
abilify (took me to almost completely healthy from pretty bad moderate; quit working after 2 weeks
Tried various antihistamines/mast cell stabilizers

Idk what to try or what to test at this point; I still have unreasonably high EBV levels, but seems like research is going away from that being impactful
 

dylemmaz

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for ebv, possibly try spironlactone. my cfs specialist recently recommended me this (didn’t have success with valcyte after 4 months). she also recommended metformin and ivermectin (no i’m not a long hauler and no these weren’t recommended based on ebv).

mestinon would be good to try. anti inflammatories like celebrex. calcium channel blockers possibly? stimulants + micronutrient formula (synergy trial) may help a subset of us. ketamine?

those are all on my list. i need more ideas though
 

nryanh94

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for ebv, possibly try spironlactone. my cfs specialist recently recommended me this (didn’t have success with valcyte after 4 months). she also recommended metformin and ivermectin (no i’m not a long hauler and no these weren’t recommended based on ebv).

mestinon would be good to try. anti inflammatories like celebrex. calcium channel blockers possibly? stimulants + micronutrient formula (synergy trial) may help a subset of us. ketamine?

those are all on my list. i need more ideas though
Thanks, yeah the more you name the more I realize I’ve tried more stuff. Ivermectin did nothing for me; I haven’t tried Celebrex (though I’ve asked for it) but was given meloxican; I tried the synergy stuff i believe (a stimulant and k pax). I haven’t tried any of the other stuff.

I am interested in the spironlactone, though I’m concerned over testosterone suppression with that.
 

Hip

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ME/CFS treatments that have a track record of helping, and are employed by ME/CFS doctors, include:

GENERAL ME/CFS TREATMENTS:
B12 methylcobalamin injections, or Greg's B12 oils (can help brain fog)
Methylation protocol (includes B12 and active folate; can improve ME/CFS)
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS, but may stop working after some weeks)
Nimodipine (calcium channel blocker which improves blood flow to brain)
Dr Joseph Brewer's anti-biofilm nasal spray to target possible mold growths in the nose and sinuses

ANTIVIRAL AND IMMUNE BOOSTING ME/CFS TREATMENTS:
Oxymatrine for enterovirus ME/CFS (antiviral immunomodulator) can make major improvements
Epivir for enterovirus ME/CFS can result in mild improvement
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS) can make major improvements
Valtrex or Famvir (for EBV ME/CFS)
Spironolactone can be curative for EBV ME/CFS
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator) can make major improvements

BRAIN FOG AND FATIGUE:
Piracetam (good supplement for brain fog)
Methylphenidate (stimulant drug for brain fog and fatigue)
Modafinil (stimulant drug for brain fog)
Dr David Bell's low dose amantadine protocol can reduce fatigue

PEM:
Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)
See also the PEM-busters thread: https://forums.phoenixrising.me/threads/48438

GUT ISSUES:
Probiotics and prebiotics (can improve fatigue and brain fog)
Rifaximin antibiotic for IBS, SIBO or gut dysbiosis (improving SIBO will also improve ME/CFS)
Herbal protocols for SIBO (can work better than antibiotics in the long term)

EXPENSIVE AND HARD TO OBTAIN TREATMENTS:
Ampligen (antiviral immunomodulator) for enterovirus or herpesvirus ME/CFS
IVIG (works well for pain)
Interferon beta for enterovirus ME/CFS (antiviral immunomodulator, benefits usually do not last)



See also the List of ME/CFS Recovery and Improvement Stories thread: https://forums.phoenixrising.me/threads/80502
 

seamyb

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Whilst deciding on what seem more like "proper" treatments, get yourself some cumin (not curcumin, not black cumin) from the shop and eat a load of it. Maybe a teaspoonful. May not work, or it may, like for me and others, have highly significant effects.
 

nryanh94

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ME/CFS treatments that have a track record of helping, and are employed by ME/CFS doctors, include:

GENERAL ME/CFS TREATMENTS:
B12 methylcobalamin injections, or Greg's B12 oils (can help brain fog)
Methylation protocol (includes B12 and active folate; can improve ME/CFS)
Low-dose naltrexone (only works for around 10% of patients, but when it works, it works well)
Abilify (can make major improvements in ME/CFS, but may stop working after some weeks)
Nimodipine (calcium channel blocker which improves blood flow to brain)
Dr Joseph Brewer's anti-biofilm nasal spray to target possible mold growths in the nose and sinuses

ANTIVIRAL AND IMMUNE BOOSTING ME/CFS TREATMENTS:
Oxymatrine for enterovirus ME/CFS (antiviral immunomodulator) can make major improvements
Epivir for enterovirus ME/CFS can result in mild improvement
Valcyte (for EBV, HHV-6 or cytomegalovirus ME/CFS) can make major improvements
Valtrex or Famvir (for EBV ME/CFS)
Spironolactone can be curative for EBV ME/CFS
GcMAF as transdermal cream, capsules or injections (immunomodulator)
Tenofovir (antiviral immunomodulator) can make major improvements

BRAIN FOG AND FATIGUE:
Piracetam (good supplement for brain fog)
Methylphenidate (stimulant drug for brain fog and fatigue)
Modafinil (stimulant drug for brain fog)
Dr David Bell's low dose amantadine protocol can reduce fatigue

PEM:
Pyridostigmine (reduces or eliminates PEM)
D-ribose (to speed up PEM recovery)
See also the PEM-busters thread: https://forums.phoenixrising.me/threads/48438

GUT ISSUES:
Probiotics and prebiotics (can improve fatigue and brain fog)
Rifaximin antibiotic for IBS, SIBO or gut dysbiosis (improving SIBO will also improve ME/CFS)
Herbal protocols for SIBO (can work better than antibiotics in the long term)

EXPENSIVE AND HARD TO OBTAIN TREATMENTS:
Ampligen (antiviral immunomodulator) for enterovirus or herpesvirus ME/CFS
IVIG (works well for pain)
Interferon beta for enterovirus ME/CFS (antiviral immunomodulator, benefits usually do not last)



See also the List of ME/CFS Recovery and Improvement Stories thread: https://forums.phoenixrising.me/threads/80502
Thank you, Hip. I’m operating under the assumption that EBV is having a huge impact on this current flare I’m having (going on 3 months now), so maybe I will attempt spironlactone with Valcyte and have someone monitor my testosterone
 

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nerd

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Did 3 months Valtrex (kidney levels elevated)
May I ask what kidney markers in particular? And what dosage did you use? I didn't expect it to be this much of a filtration burden... I've also started using it with its lowest dose of 500mg once daily.
 

Aidan Walsh

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Did 3 months Valtrex (kidney levels elevated)
6 months Famvir (nothing)
Been on Valcyte for 1 month
LDN for about a year (nothing)
Curcumin fro about a year (nothing)
Memantine for about a month (stopped working)
abilify (took me to almost completely healthy from pretty bad moderate; quit working after 2 weeks
Tried various antihistamines/mast cell stabilizers

Idk what to try or what to test at this point; I still have unreasonably high EBV levels, but seems like research is going away from that being impactful
Look into all the types of Porphyria urine blood stool, DNA testing after there are some now ME/CFS EDS they are positive to porphyria testing. A Group on Facebook is called 'porphyria sucks'
 

Wishful

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My suggestion is to not limit yourself to theoretical treatments, such as antivirals. We don't know how ME works, so we don't know what will work and what won't. Is cumin recommended by theory? No, but it worked very well for me and is working for others, yet we don't know why. I'm presently sensitive to proline. What, theoretically, should I try for that? Theory provides a blank list. However, I discovered that something in beef and lamb counteracts the sensitivity. That's yet another accidental discovery, still lacking in a theoretical basis, but it works well.

So, expand your list of things to try to items found in your local grocery store, for starters. Maybe expand into ethnic grocery stores, and try some foods, herbs&spices that you haven't tried before. The chances of finding things that work well may be low, but definitely non-zero, and things bought in grocery stores are far less likely to have serious side-effects. Cheaper too.

Addition: if you've tried a number of antivirals, and had no positive response, maybe take that as a sign that it's the wrong approach for you.
 

nryanh94

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My suggestion is to not limit yourself to theoretical treatments, such as antivirals. We don't know how ME works, so we don't know what will work and what won't. Is cumin recommended by theory? No, but it worked very well for me and is working for others, yet we don't know why. I'm presently sensitive to proline. What, theoretically, should I try for that? Theory provides a blank list. However, I discovered that something in beef and lamb counteracts the sensitivity. That's yet another accidental discovery, still lacking in a theoretical basis, but it works well.

So, expand your list of things to try to items found in your local grocery store, for starters. Maybe expand into ethnic grocery stores, and try some foods, herbs&spices that you haven't tried before. The chances of finding things that work well may be low, but definitely non-zero, and things bought in grocery stores are far less likely to have serious side-effects. Cheaper too.

Addition: if you've tried a number of antivirals, and had no positive response, maybe take that as a sign that it's the wrong approach for you.
I guess for me the thought behind the antivirals is that I have had the relapse/remit type of ME. My flares are directly correlated with my highest EBV titer levels.
 

lenora

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Have you been given a definitive diagnosis? If not, a neurologist, preferably one that knows about ME/FM and you'll be tested for all types of autoimmune illnesses.

Failing that, a rheumatologist who specializes in the same illnesses. You may be put on low-dose antidepressants if you have pain. The first line of defense is generally elavil, but that's becoming rather dated now as gabapentin came along and then pregabalin (lyrica). These do help with the pain, take my word on that. It will never disappear, but it can be reduced considerably. There will be side-effects, don't look them up ahead of time but give the drug at least 2-3 wks. before you think it's not working. Gabapentin may take even longer.

A knowledgeable doctor can also prescribe a compound ointment that can be used a few times/day.

Failing that, ice for pain.

Yours, Lenora.
 
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nryanh94

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May I ask what kidney markers in particular? And what dosage did you use? I didn't expect it to be this much of a filtration burden... I've also started using it with its lowest dose of 500mg once daily.
I had elevated creatinine. Believe it was 1500mg twice a day
 

nryanh94

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Have you been given a definitive diagnosis? If not, a neurologist, preferably one that knows about ME/FM and you'll be tested for all types of autoimmune illnesses.

Failing that, a rheumatologist who specializes in the same illnesses. You may be put on low-dose antidepressants if you have pain. The first line of defense is generally elavil, but that's becoming rather dated now as gabapentin came along and then pregabalin (lyrica). These do help with the pain, take my word on that. It will never disappear, but it can be reduced considerably. There will be side-effects, don't look them up ahead of time but give the drug at least 2-3 wks. before you think it's not working. Gabapentin may take even longer.

A knowledgeable doctor can also prescribe a compound ointment that can be used a few times/day.

Failing that, ice for pain.

Yours, Lenora.
Dr. Levine diagnosed me with ME; fortunately pain isn’t much of an issue for me. Just unrelenting fatigue (mostly mental), PEM, brain fog and poor sleep
 

Wishful

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I guess for me the thought behind the antivirals is that I have had the relapse/remit type of ME. My flares are directly correlated with my highest EBV titer levels.
My perspective is that the viral activity is increasing your ME severity, but that stopping the virus wouldn't cure you of ME. Reducing the symptoms to the minimal level would certainly be of benefit, but since the antiviral treatments you've already tried had no effect, I think you're aiming at the wrong target. Instead, think about blocking whatever it is that the virus generates (cytokines or whatever) that modulates your ME. Cuminaldehyde may have worked for me by blocking something in the pathway between immune cell activation (from damaged muscle cells) and whatever PEM involves. Of course, the pathway between viral activity and ME symptoms is a mystery, so there's no convenient theory for what to try. I've simply gotten lucky with the 'try lots of things and pay attention to changes' method.
 
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My perspective is that the viral activity is increasing your ME severity, but that stopping the virus wouldn't cure you of ME. Reducing the symptoms to the minimal level would certainly be of benefit, but since the antiviral treatments you've already tried had no effect, I think you're aiming at the wrong target. Instead, think about blocking whatever it is that the virus generates (cytokines or whatever) that modulates your ME. Cuminaldehyde may have worked for me by blocking something in the pathway between immune cell activation (from damaged muscle cells) and whatever PEM involves. Of course, the pathway between viral activity and ME symptoms is a mystery, so there's no convenient theory for what to try. I've simply gotten lucky with the 'try lots of things and pay attention to changes' method.
The titers are very high. It's causing damage to cells and mitos... If it gets latent he has a lot of mess and broken DNA and a risk for cancer as a consequence... I would treat it. What he does in addition is another question
 

lenora

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Hello.....If it's a matter of staying on the antivirals, Many people are on them for really extended periods of time now. Perhaps they have to be stopped slowly, I don't know the answer to that.

I do know that you don't want shingles and you may be a candidate for them if you stop them anti-virals. Ask your Dr., any doctors (and I'm sure you'll get differing answers, although they may have reached a consensus now, I don't know). Also check and see if you can have the shingles vaccine (two step process, just like COVID).

I was bedridden with them for over a year and wouldn't wish them on anyone...at all. I've had them 4 times in total, although this was before the antivirals were widely used. Please talk to a Dr. before you decide what to do...your life is important.

@Martin aka paused||M.E. .....do you have shingles now. If so, how are you doing? Nasty business. I hope the antivirals are at least limiting the outbreaks. You will recover. Yours, Lenora.
 
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jump44

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Look into all the types of Porphyria urine blood stool, DNA testing after there are some now ME/CFS EDS they are positive to porphyria testing. A Group on Facebook is called 'porphyria sucks'
really. I had porphyria tested and had elevations in blood stool samples. Drs had no clue what it meant or what to do for it. I wonder if this is a common finding in people with cfs who actually test for it.
 
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really. I had porphyria tested and had elevations in blood stool samples. Drs had no clue what it meant or what to do for it. I wonder if this is a common finding in people with cfs who actually test for it.
My contact in Stanford wanted me to check that and it confused me. Only did the urine test it was negative.

@lenora I'm not on tenofovir yet. I don't have shingles. My VZV is latent.
 

lenora

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@Martin aka paused||M.E. I'm so glad you don't have shingles. Something everyone should definitely try to avoid.

@Nyranh94.....I'm glad that you don't suffer from pain. One less thing on the list. Sleep is a problem for so many of us and sleeping meds only work for l-2 nights for me. I take nothing now, although my neurologist did give me samples of one that is to work in a different way. I should at least try it as he goes out of his way to help.

I used to have very swollen glands, a sore throat constantly, swollen lymph nodes and one day I realized they had all gone. Even with getting the vaccine, I didn't have a reappearance of those symptoms. I now have severe allergies, sinus problems and tooth infections in their place. I do get sore throats, but they come & go.

Lack of sleep, unfortunately, has stayed with me. So symptoms do change, some disappear forever or others step in and take their place. My pain levels are also lower than they were years ago....a major plus.

I hope you're eating well as I believe that's of ultra-importance to us. Well balanced, nourishing meals, plenty of water....that type of thing. Wishing you well.
 
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Mary

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@nryanh94 - I suggest you try andrographis for EBV. See: Inhibition of the epstein-barr virus lytic cycle by andrographolide - PubMed (nih.gov)
Therapies based on targeting Epstein‐Barr virus lytic replication for EBV‐associated malignancies (nih.gov)

molecules-24-00997 (3).pdf
Andrographis paniculata, commonly used to treat a range of illnesses, including bacterial infections, inflammations and high blood pressure, was shown to inhibit transcription of EBV IE genes and the production of EBV virions [90]. The diterpenoid andrographolide present in A. paniculata is important because of its anti-inflammatory, antithrombotic, anticancer and anti-immunostimulatory activities. Furthermore, andrographolide showed antiviral activity not only against EBV but also against other viruses including HIV [91,92], influenza virus, SARS [93] and HSV-1 [92,94]. It is currently unknown how andrographolide inhibits the transcription of EBV BRLF1 and BZLF1 genes but it is plausible that andrographolide inhibits signaling pathways that activate the transcription of EBV IE genes
It's helped me a lot with a recurrent sinus infections - I get sick every time I crash and I recover much more quickly from being sick now. Several years ago my HHV-6 numbers were quite high, my doctor at the time knew nothing about anything, and I didn't know either. A few years later I saw another doctor who was knowledgeable and he looked at my lab reports from before and said if he had been treating me then, he would have put me on an antiviral. However, my HHV-6 numbers had gone down significantly. The only thing I recall doing differently was starting andrographis. Also, my NK cell number went up a bit, I think again due to the andrographis. I won't be without it! This is what I take: Planetary Herbals, Full Spectrum, Andrographis, 400 mg, 120 Tablets - iHerb

When sick, I take 2 tablets 3 x a day. When I first started I took it regularly off and on - on for 3 weeks or so, then off for a week or 2, then back on. But now I only take it when sick.

Also, you might try branched chain amino acids - they cut my PEM recovery time by more than half. They've helped several people here with energy. I take about 5000 mg a day (divided doses on an empty stomach). @ljimbo423 takes about twice that.