What is there to try next?

[Aidan Walsh]

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.

I know a woman who had 3 urine tests for porphyria the first 2 were negative then the third was a positive

 

[Aidan Walsh]

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.

The stool test only picks up 2 types of porphyria I was negative on the stool test for variegate & coproporphyria it does not find acute porphyria.

I think 2 types in the stool may be skin type ones. Medichecks advised doing a urine test during an Acute porphyria attack. If your blood, stool was elevated I would try for more tests even genetic ones.

Your stool test points to 2 types of porphyria variegate or coproporphyria. I would go to a good Endo metabolic Doctor or Geneticist,

 

[Martin aka paused||M.E.]

I know a woman who had 3 urine tests for porphyria the first 2 were negative then the third was a positive

Do you know why? Perhaps I should repeat it! But I don't have any of these symptoms except high heart rate at rest.

 

[Aidan Walsh]

Do you know why? Perhaps I should repeat it! But I don't have any of these symptoms except high heart rate at rest.

I think it is because if it is the Acute type it only happens in the attacks during acute phases, some people with porphyria never get acute attacks but still have symptoms...I would do the stool sample to rule out variegate &

Coproporphyria. Are you in the UK? Medichecks runs the stool one by mail. I think my Appendix severe attack was not appendix, also I got a tetanus shot for a hockey cut I took on my elbow 4 stitches, it is safe for porphyria

but can make huge amounts of the Haem precursors. Do you get abdominal pains or have an IBS label? Do you have any skin issues or problems now with the Sun, maybe yours is the other types?

I am convinced the ME/CFS Fibro so-called Lyme even EDS H are all missed diagnosis illnesses, too many people it has happened to now. Some porphyria patients are psychotics, not all are...There are 3 types Neuro

 

[Martin aka paused||M.E.]

I think it is because if it is the Acute type it only happens in the attacks during acute phases, some people with porphyria never get acute attacks but still have symptoms...I would do the stool sample to rule out variegate &

Coproporphyria. Are you in the UK? Medichecks runs the stool one by mail. I think my Appendix severe attack was not appendix, also I got a tetanus shot for a hockey cut I took on my elbow 4 stitches, it is safe for porphyria

but can make huge amounts of the Haem precursors. Do you get abdominal pains or have an IBS label? Do you have any skin issues or problems now with the Sun, maybe yours is the other types?

I am convinced the ME/CFS Fibro so-called Lyme even EDS H are all missed diagnosis illnesses, too many people it has happened to now. Some porphyria is psychotics, not all are...There are 3 types Neuro

Germany... Could order the stool test. No don't have these symptoms except IBS/IBD (what's the difference btw?)

 

[lenora]

I think almost everyone with CFS/ME/FM has or had IBS at one point or another. I'll have to check on the 3rd type of porphyria. Interesting. Yours Lenora.

 

[Aidan Walsh]

Germany... Could order the stool test. No don't have these symptoms except IBS/IBD (what's the difference btw?)

I think the symptoms are similar to ME/CFS. Fatigue is one symptom, one Woman told IBS for years. Even if you do the stool test & negative it only knocks 2 types off the list of 7 types. Try if you can check out the link on

porphyria sucks on Facebook you will see some ideas on there. Europe is more open than the UK for tests especially genetics & these tests. Did you check your D-lactate levels yet? Tachycardia in some not all is a

symptom as well in Porphyria, Tachy is also involved in POTS Syncope dysautonomia, blood pressure drops standing more symptoms of Porphyria. There are symptom lists on each porphyria even the skin ones

 

[Springbok1988]

Which doctors are running these tests for you? I’ve seen a rheumatologist, neurologist, endocrinologist, and infectious disease specialist. None of them have done anything for me.

 

[Aidan Walsh]

Which doctors are running these tests for you? I’ve seen a rheumatologist, neurologist, endocrinologist, and infectious disease specialist. None of them have done anything for me.

I did the stool test privately, trying to do the urine blood DNA through a Doctor now

 

[Martin aka paused||M.E.]

I think the symptoms are similar to ME/CFS. Fatigue is one symptom, one Woman told IBS for years. Even if you do the stool test & negative it only knocks 2 types off the list of 7 types. Try if you can check out the link on

porphyria sucks on Facebook you will see some ideas on there. Europe is more open than the UK for tests especially genetics & these tests. Did you check your D-lactate levels yet? Tachycardia in some not all is a

symptom as well in Porphyria, Tachy is also involved in POTS Syncope dysautonomia, blood pressure drops standing more symptoms of Porphyria. There are symptom lists on each porphyria even the skin ones

I can crash for weeks looking too long at my phone. This is ME.
But maybe this comes in addition

 

[Wishful]

I think almost everyone with CFS/ME/FM has or had IBS at one point or another.

I don't recall every having anything like IBS.

 

[mitoMAN]

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

For me, NIMODIPINE greatly helped the last couple of weeks (might stop working like Abilify who knows)
It increases the blood flow to the brain.
https://forums.phoenixrising.me/thr...ve-guide-s-parker-mba-bsc-january-2014.62243/

A similar medication but increased bloodflow to the whole body:

Pentoxifylline might be worth a shot
https://forums.phoenixrising.me/thr...munesupresive-agent-your-opinion.82559/page-3

 

[Aidan Walsh]

I don't recall every having anything like IBS.

Maybe you are constipated

 

[Martin aka paused||M.E.]

For me, NIMODIPINE greatly helped the last couple of weeks (might stop working like Abilify who knows)
It increases the blood flow to the brain.
https://forums.phoenixrising.me/thr...ve-guide-s-parker-mba-bsc-january-2014.62243/

A similar medication but increased bloodflow to the whole body:

Pentoxifylline might be worth a shot
https://forums.phoenixrising.me/thr...munesupresive-agent-your-opinion.82559/page-3

I really should try nimodipine... It's one of Goldstein's go to drugs

 

[Aidan Walsh]

I had elevated creatinine. Believe it was 1500mg twice a day

How high was your creatine? Mine was recently tested it is in normal ranges

 

[frozenborderline]

Glycine site NMDA antagonists. P2x7 antagonists.
PDK antagonists (I think this is correct) or lactate dehydrogenase antagonists? Ethyl pyruvate.
Cci surgery.

Mcas treatment If applicable.

Iv saline.

 

[frozenborderline]

I really should try nimodipine... It's one of Goldstein's go to drugs

Me too

 

[nryanh94]

How high was your creatine? Mine was recently tested it is in normal ranges

1.48 mg/dl 1.35 is normal. Dr wanted me off once it hit that

 

[Aidan Walsh]

I know a woman who had 3 urine tests for porphyria the first 2 were negative then the third was a positive

Do you not find it odd they mentioned this to you? I wonder now what was the injection he got, they use infusion & injections in porphyria treatments, he did say injection procedure...Just a thought

 

[Learner1]

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

Expecting one intervention to help one at a time isnt too useful as there is a cascade of other things that happens in this illness. Working this as a systems biology problem is more helpful. For instance, EBV can deplete nutrients like zinc and vitamin C, deplete collagen and increase symptoms from the nerves between discs in the spine, stress the adrenals and thyroid causing adrenal insufficiency and low T3 syndrome, fragment mitochondria, cause oxidative and nitrosative stress, put a load on the immune system causing other viruses to reactivate and weakened immune function, and trigger all kinds of autoimmunity, none of which are fixed by the list of drugs you tried.

In addition to your ME/CFS specialist, you might try working with a functional medicine doctor who might help you with some of these issues.

And, my ME/CFS specialist had me on Valcyte for 20 months, not 3.

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

There are many things missing from this list which is a random smattering of different treatments which will only work if you have a problem that they will help. Properly testing to figure out what problems you have and applying treatments appropriately is far more successful.

For example, B12 does not work by itself, it works in concert with other B vitamins and mineral cofactors.

Candida and oxalates are gut problems that are not on this list and treating them can make a big difference.

Treating ammonia can help with brain fog.

Glutathione and branched chain amino acids can help with PEM.

Martin Pall's peroxynitrite reducing protocol and Thomas Seyfried's mito correction protocol can be helpful.

IVIG has supported my immune system to be able to help fight viruses and bacteria. It has done nothing for my pain because I don't have pain.

Rituximab, when appropriately prescribed has helped some of us, as has plasmapharesis - both are for autoimmunity.

And so on.

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.

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

The test results you showed were just antibodies. Once you've had these illnesses, your antibody titers will probably be high and chasing them while on medications is not terribly productive. Why is your doctor not testing quantitative PCR for these infections?