Colchicine for ME/CFS? Montoya Patient Reportedly Does Very Well

[Cort]

I got this in an email

" One of his patients is considered "cured" by Montoya from a combination of .3mg. colchicine every 3rd day (optimal dose q.d., and even every other day made her nauseous), 1GM Valtrex q.d., and some female hormone rebalancing. She also mentioned that colchicine is considered quite safe at such a low dose. She recommends taking it for 3-6 months."

Colchicine is a gout medication which is used for all sorts of other stuff

Colchicine is a medication most commonly used to treat gout. It is a toxic natural productand secondary metabolite, originally extracted from plants of the genus Colchicum (autumn crocus, Colchicum autumnale, also known as "meadow saffron").
Adverse effects are primarily gastrointestinal upset at high doses.[1] In addition to gout, colchicine is used to treat familial Mediterranean fever, pericarditis, Behçet's disease, and atrial fibrillation

I wonder how Montoya thought to try it?

 

[Hello!]

Hmm, sounds a lot like Dr. St. Amand's approach.

 

[Remy]

Butydoc from PR took .9mg/day. I think between that and Valcyte, he recovered quite a bit of functionality.

I'm surprised I never tried this one honestly.

 

[Hello!]

Do we know of anyone prescribing it, other than Dr. Montoya?

 

[Who Me?]

Butydoc saw Montoya.

 

[Who Me?]

I'm surprised I never tried this one honestly.

Next on your list!

 

[ladybug64]

I also see Montoya and he had me try colchicine, too-- but it did not work for me. It caused bad side effect and made me feel worse. He Put me on the Valcyte, too, which has been a big help, enabling me to get out of bed some days at least.... EBV & other viral Titers are still off the chart even while on Valcyte though, but I feel definite improvement on it (I can shower some days)- and definite regression when they attempted to cut back my dose from 3 to 2x day.

They are stumped with me as I have tried everything that most people get at least some relief with --but nothing works for me.

What helps you folks with the unbearable pain? Anyone have any suggestions?

 

[Strike me lucky]

I also see Montoya and he had me try colchicine, too-- but it did not work for me. It caused bad side effect and made me feel worse. He Put me on the Valcyte, too, which has been a big help, enabling me to get out of bed some days at least.... EBV & other viral Titers are still off the chart even while on Valcyte though, but I feel definite improvement on it (I can shower some days)- and definite regression when they attempted to cut back my dose from 3 to 2x day.

They are stumped with me as I have tried everything that most people get at least some relief with --but nothing works for me.

What helps you folks with the unbearable pain? Anyone have any suggestions?

I have heard that valtrex or famvir can be better suited for ebv where valcyte is better suited to cmv/hhv6??

 

[Remy]

I also see Montoya and he had me try colchicine, too-- but it did not work for me. It caused bad side effect and made me feel worse. He Put me on the Valcyte, too, which has been a big help, enabling me to get out of bed some days at least.... EBV & other viral Titers are still off the chart even while on Valcyte though, but I feel definite improvement on it (I can shower some days)- and definite regression when they attempted to cut back my dose from 3 to 2x day.

They are stumped with me as I have tried everything that most people get at least some relief with --but nothing works for me.

What helps you folks with the unbearable pain? Anyone have any suggestions?

Afrin suggests hydroxyurea in his book for patients with pain. It's a serious drug but so are Valcyte and colchicine so...might be worth a discussion.

https://www.ncbi.nlm.nih.gov/m/pubmed/24192267/

 

[ladybug64]

I have heard that valtrex or famvir can be better suited for ebv where valcyte is better suited to cmv/hhv6??

My HHV6 titers are off the chart also, maybe that is why they chose Valcyte for me. DI you remember where you hears about that?

 

[ladybug64]

Afrin suggests hydroxyurea in his book for patients with pain. It's a serious drug but so are Valcyte and colchicine so...might be worth a discussion.

https://www.ncbi.nlm.nih.gov/m/pubmed/24192267/

Thank you for the suggestion and link

 

[Cort]

Butydoc from PR took .9mg/day. I think between that and Valcyte, he recovered quite a bit of functionality.

I'm surprised I never tried this one honestly.

...I don't know why that made me laugh but it did - thanks

 

[Cort]

I heard from someone that Montoya's been using it for quite some time and that sometimes it helps and other times it doesn't. It another on of those if you're the right person - then congratulations.

 

[Cort]

I have heard that valtrex or famvir can be better suited for ebv where valcyte is better suited to cmv/hhv6??

According to Wikipedia valcyte is mostly used for CMV but I know of two people with other herpes viruses who did poorly on valtrex and great on Valcyte.

Dantini and Pridgen use famvir over valtrex...

 

[Cort]

I also see Montoya and he had me try colchicine, too-- but it did not work for me. It caused bad side effect and made me feel worse. He Put me on the Valcyte, too, which has been a big help, enabling me to get out of bed some days at least.... EBV & other viral Titers are still off the chart even while on Valcyte though, but I feel definite improvement on it (I can shower some days)- and definite regression when they attempted to cut back my dose from 3 to 2x day.

They are stumped with me as I have tried everything that most people get at least some relief with --but nothing works for me.

What helps you folks with the unbearable pain? Anyone have any suggestions?

Did you try valtrex? I Imagine that he tried you on that first?

 

[Strike me lucky]

My HHV6 titers are off the chart also, maybe that is why they chose Valcyte for me. DI you remember where you hears about that?

Mostly peoples experiences on cfs forums. There were some who had high hhv6 cmv and ebv, for some i remember valcyte lowered hhv6 and cmv but ebv was stubborn and started coming down when they added famvir or valtrex. So there was a few people taking valcyte for hhv6/cmv as weĺl as famvir or valtrex for ebv. Thencwhen all titres came down many stayed on famvir or valtrex which helped keep all the herpes viruses down???

According to dr lerner if one doesnt respond to that he would also look for ongoung bacterial co-infections?

 

[zzz]

I have heard that valtrex or famvir can be better suited for ebv where valcyte is better suited to cmv/hhv6??

Valcyte is equally effective combating all herpes viruses. However, due to its strong side effects, it is usually restricted to treatment of CMV and HHV6, where there aren't other really effective treatments.

Valcyte can also be a powerful immunomodulator, as Dr. Montoya has found (and as I have experienced), so it can be helpful even in the absence of herpes viruses. But in standard use, it's not prescribed that way.

As for colchicine, I've been taking it for a couple of years and find minor benefits from it.

 

[ShyestofFlies]

I'm so happy for this person, I hope they continue to do well!

 

[Merida]

@ladybug64
You brought up terrible pain. I was there. Even a tiny wrinkle in the bed sheet was very painful. A combo of 3 drugs and gentle pool movement for 1 year -3 days/ week helped. Took 60 mg. oxycodone ( short acting),
100mg. Wellbutrin, as much Neurontin as I could take - 300mg.

Doxepin took away All of my pain. It was wonderful. Had to start with a few milligrams ( liquid) and titrate up. 25 mg pills were way too much - asleep for 2 days. However, the doxepin completely paralyzed my bowel, and I could not take it long term.

A friend did great on low dose Naltrexone.

The colchicine is interesting. I actually have had 3 gout attacks. Thinking I should try Guaifenesin ( an old gout remedying) regularly. Thinking Dr. St. Amand may be right about some things. Anyone else have extreme tartar build up on teeth? What about multiple calcified phleboliths in abdomen? These things are both composed of calcium phosphate, and St. Amand thinks our kidneys are not eliminating phosphates the way they should. Hmmm.