Blogger Katarina Voss writes a comprehensive article on treating ICC-ME with antiretrovirals

Ema

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I'm wondering if I should stick with the Descovy (emtricitabine/tenofovir) or switch to Vemlidy (tenofovir alone) now that my insurance will cover either.

Are there any benefits that you know of to the emtricitabine part of the equation? Most all I found suggests that it's the tenofovir that has activity against gamma herpes viruses as well as HERVs.
 

Lisa108

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Katharina Voss wrote in her blog that PrEP also worked for some people. So I googled a bit about PrEP in Germany. Here is what I found:

What is PrEP:
The name stands for Prä-Expositions-Prophylaxe (pre-exposure prophylaxis). It is a combination of two antiretrovirals, usually used as a prophylaxis method against infection with HIV.

The two active substances are Emtricitabin (200mg) and Tenofovirdisoproxil (245 mg, = 136 mg Tenofovir).
Emtricitabin is a Nukleoside-Reverse-Transcriptase-Inhibitor.
Tenofovirdisoproxil is a Nukleotide-Reverse-Transcriptase-Inhibitor.

How to get PrEP:

1. The cheapest way:

In the past, PrEP was very expensive. But one pharmacist could convince the pharma company "Hexal" to take part in a huge pilot project. The costs for 28 tablets are ~ 50 €.

It requires a private prescription (Privatrezept) from a doctor. Any GP who ordered education material on PrEP can legally do this. The prescription must include the following text:

"PrEP Emtricitabin / Tenofovirdiproxil
Hexal 200mg / 245 mg Filmtabletten
zur Verblisterung" [my bolding]

Not every pharmacy can order PrEP. Here is a list of pharmacies in Germany that are part of the pilot project. After 2-3 days you can pickup your 28 tablets, individually vacuum packed in foil. It should now be possible to order larger quantities (like 3x28 tablets) on one receipt.


2. Alternative, maybe easier, and lactose-free way:

The PrEP product from Hexal mentioned above is the cheapest, but it contains Lactose!!!

I found another PrEP from Ratiopharm (see below), which is lactose-free, but it will cost around 70 € /30 tablets.
It seems that you could order this in any pharmacy in Germany, again as a privat prescription, but without the special bolded text above.


Necessary tests:

Before using PrEP it is mandatory to test for acute infections of HIV and Hepatitis B. [If you are HIV-positive, PrEP would not be the proper treatment and you would run into danger of becoming resistant to these substances. If you have hepatitis, PrEP would help against that but if you'd stop PrEP you'd run into danger of a massive flare-up.]

During treatment with PrEP, several blood parameters have to be checked regularly. See Katharina Voss's blog for more info on this (or the video lecture I linked below).


Outlook
:
Our new minister of health, Jens Spahn, announced that in the future, health insurances will cover the costs for PrEP. Since PrEP is usually used by people with risky sexual behaviour, it may be that the use in our ME/CFS case will still be not covered. [I mean, officially. Noone will ever have to prove that they are practicing risky sexual techniques... :whistle:]


Some useful links (in German only):

Very good lecture on PrEP from a HIV-specialized GP [hosted by Hexal] here
PrEP Hexal leaflet and info here
PrEP Ratiopharm leaflet and info here
Medizinfuchs price comparison PrEP Ratiopharm here
Deutsche Aidshilfe on PrEP here


Edited for clarity.
 
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Ema

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The Vemlidy and Descovy sit next to each other in my drawer and I took the Descovy yesterday. I discovered that it has a far greater effect on my sleep than the Vemlidy so I am so glad I was able to get the Vemlidy covered after all. So far restless sleep has been the only real side effect though and on the Vemlidy I still can get a reasonable night, even if it is a little more restless than normal.
 
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Ms Voss started with only 1/8 Viread (Tenofovir) capsule.
ELLKAAYE in www.symptome.ch writes to start with low dose and it can take a long time until you reach full dose.
I cannot honestly agree with that at all though. I discovered how much isentress healed me after I went on it as PEP after an attack. I was taking it twice a day plus Truvada and Viread once a day. After the monthly dosage was gone- I then obtained Truvada for free through the health dept. as PREP. It had no effect. I am convinced that it is the integrase inhibitors like isentress that did the trick for me. When I obtain more, I will take it twice daily- more than likely, unless a physician experienced with it says differently. I will trust my body more than anything.
 

xcell

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Read this: http://www.drmyhill.co.uk/wiki/A_Regime_for_Antiretroviral_Treatment_of_Myalgic_Encephalomyelitis

Cistus Incanus, Reishi, Green tea instead of Raltegravir is used. If there is no improvement then switch to Raltegravir. (Money saving and less side effects)

We have report of some of the ME facebook group which seem to have HUGE improvement with this combination and are back in their life!

@Goldilocks I read always 3-4 months at least before improvement in ME cases, no matter if its Rituximab or antivirals.
 

ScottTriGuy

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I cannot honestly agree with that at all though. I discovered how much isentress healed me after I went on it as PEP after an attack. I was taking it twice a day plus Truvada and Viread once a day. After the monthly dosage was gone- I then obtained Truvada for free through the health dept. as PREP. It had no effect. I am convinced that it is the integrase inhibitors like isentress that did the trick for me. When I obtain more, I will take it twice daily- more than likely, unless a physician experienced with it says differently. I will trust my body more than anything.
Can you please share more about your experience with ARVs?

How long after you started the Isentress / Truvada / Viread combo did you start to notice improvements, and what were those improvements?

After you stopped Isentress and Viread, how long did you take Truvada only? How long before your ME symptoms intensified?

It sounds like currently you are not taking any ARVs. How is your health? Have you completely slide back to pre-AR V levels, or do you think you have some residual benefits?

Thanks.
 

aquariusgirl

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Hi, pls advise what facebook group this is? thank you.


Cistus Incanus, Reishi, Green tea instead of Raltegravir is used. If there is no improvement then switch to Raltegravir. (Money saving and less side effects)

We have report of some of the ME facebook group which seem to have HUGE improvement with this combination and are back in their life!

@Goldilocks I read always 3-4 months at least before improvement in ME cases, no matter if its Rituximab or antivirals.
 

junkcrap50

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Made a post in another thread, that I should also post here. I think I've had some improvements on ARVs. Previous post: https://forums.phoenixrising.me/ind...-treatment-for-cfs.45823/page-16#post-1011020

I've been on Descovy (Emtricitabine, Tenofovir Alafenamide) for 1 month now and have noticed the past 5 days that I'm feeling pretty good and a real, significant improvement. I can't think of attributing my improvement to anything else. In fact, I've forgotten to take my Thymosin Alpha-1 and Thymosin Beta-4 peptides the past week, which I've relied on heavily. In the past, if I miss more than 2 days of these peptides, I would go back to being mostly bed bound, severe malaise, headaches, herxing feeling, irritable. And no, I am 100% certain that temporarily stopping these peptides would not lead to improvement. Every time in the past 9 months, a day or two miss would lead to a great flare up of my symptoms.

I feel like I have more stamina (not necessarily more energy, well maybe a bit, but I can last longer doing things), a little clearer thinking, and definitely more motivation. I had to help a sibling with a school assignment, and I was surprised how capable of doing it I was. And that I could work at it for several hours in one sitting. I even felt so good, that I finally thought I could even try going back to finish my schooling.

Just wanted to leave a note or comment on, what I think is success to ARVs. I'm still tepid on whether or not to attribute to it, and I will talk to my doctor to see if any of his other patients have noticed anything.
 

Countrygirl

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Where have you heard about these people who have improved? Just asking because I would like to read about them. I just started an ARV for my CFS
My apologies for being so late in answering, but I have and am distracted by 'life events' that have been demanding my complete energy-supply over most of the past eight months.

@bctjr1993, unfortunately, I cannot direct you to anywhere you can read about it apart from what I have already posted as it is mostly via personal contacts with both patients and certain doctors. There has been a considerable amount of hostility directed at people who have suggested that ARVs are helping and so it makes people wary of making their stories public. Also it could attract professional problems for any doctor who was known to be prescribing them, so you are not likely as yet to read much about it on the net.
 
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There has been a considerable amount of hostility directed at people who have suggested that ARVs are helping and so it makes people wary of making their stories public.
This needs to stop, a forum should be a place where people can share their experiences with the hope that we might all find some significant relief from this horrible illness.

I had Scutellaria baicalensis sitting on my shelf, it had been prescribed for a sinus infection, and had I searched PR for it I would have found quite a bit of information about it's use as an antiretroviral. But, I didn't know to look for it.

Until you shared your friends experience with it.

Now I'm stronger and have done research into the use of herbal antiretrovirals, seeing as how pharmaceutical antiretrovirals can be so difficult to obtain for this illness. I'm taking 1/3 of the dose my Doctor prescribed for a sinus infection and his advise was that I may be able to take that long term. I just need to pay attention to any signs of GI tract damage.

Thank you so much for being willing to discuss a controversial issue. ;)
 

Lisa108

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RE: my post above (#43) , PrEP in Germany:

It seems like National health insurance now pays for PrEP.
(There is no official statement on this from the health insurances, but the German online pharmacies all offer the PrEP meds for a 10 € prescription fee if you provide a 'Kassenrezept').

Edited (because there was no official announcement, just my observation re: online pharmacies)
 
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Lisa108

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Sorry @xcell, I can't provide you a link. But as I gooled prices for PrEP in German online pharmacies, it was obvious that every one PrEP product was already available for 10 € prescription fee...

Link to an example here. (Maybe you have to select 'Kassenrezept' in case you see the normal price.)

But as there was no official announcement I edited my post above.
 
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junkcrap50

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Has anyone tried viread? curious to hear if it still helps whom : :nerd:
I'm taking Descovy which contains Viread in it along with 2 other drugs. I've been on it for 3 months. After the first 3 weeks, I think I noticed a little bit of improvement, just overall mood and energy. But I haven't noticed anything since and now doubt any previous improvement can be attributed to my ARV. I'm going to take it for 6 months and then probably stop.
 

Wally

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Does anyone know how to translate this article into English? Very interested to see what she has written about Cistus Incanus.
 

Pearshaped

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Could just read abstract.
Patient who was mostly bedbound for years(it didn't say how long exactly)with ME started to get into remission after taking Cistus Incanus already for 1.5years.
In Article, it is said Cistus Incanus does have antiviral-,antifungal-,and antibacterial properties.
Patient used to match ICC criteria but doesn't anymore. she still takes Cistus Incanus.