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

Pearshaped

Senior Member
Messages
579
Patient started with 400mg daily ,slowly increased dosage up to 2100mg.
Remission started after taking full dosage for 1.5year.
 
Messages
95
Location
SoCal
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.

Is "Cistus Incanus" a tea or ? I'm trying to find since I'm going to start Viread again.
 

Pearshaped

Senior Member
Messages
579
Has someone tried Cistus Incanus?
Ive never heard about that plant to have antiviral properties until K.Voss has mentioned it in her in her blog.
 
Messages
95
Location
SoCal
Cistus as capsules, tea and lozenge.
Example product: https://www.ebay.de/itm/Vivameo-120...egi-Kapseln-Zistrose-Polyphenole/262142365259

@JinZ How long did you take viread last time? If you don't get improvements within 3-4 months then it seems not to work for you.

Thank you I will give it a try since a 1lb is only $29.

I took Epivir and Viread for 5 months and I didn't really feel much of a difference. I restarted yesterday and so far a similar effects. Which is a snuff nose and a bit of a running nose that seems consistent when I'm on it. No other symptoms I can recall.
 

Lisa108

Senior Member
Messages
675
I'm not an expert but does it matter if you cold brew or hot brew the Cistus Incanus?
There is an instruction on the blog. It seems to matter how to brew it.

ETA:
For high concentrations of phenolic substances in tea appropriate preparation plays an important role. It should be used mineral-poor water. The addition of a little acid, for example, lemon juice, can lower the pH of the cooking water, whereby the stability of bioactive phenolic compounds is increased during the making facilities. The manufacturer's recommendations of 5 minutes Cooking time is too short. In order to achieve optimal effectiveness of tea preparation, the cooking time should be increased to 20 minutes. Exceeding the cooking time leads to the degradation of the phenolic substances. The cooking temperature should be 95 ° C,Riehle et al. 2013 ; Riehle 2014
 

Pearshaped

Senior Member
Messages
579
Has anyone read or heard how the daughters from Katarina Voss are doing?(2019).
I'd be interested to know if they are continiously improving or if the ilness has sort of "stabilized" and if so how many points of the scale did they go up?
I can't find any update about it on her blog..maybe the German forum users know more?
The blogger seems to be exitet about Cistus incanus and tenofovir but id like to know more about the daughters functional improvement...
 
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19
No updates. People asked on german forums/groups, but there was no reply regarding that. The last was last year regarding the antiretrovirals.
 

xcell

Always looking for new knowledge and options!
Messages
94
Location
Germany
Has anyone read or heard how the daughters from Katarina Voss are doing?(2019).
I'd be interested to know if they are continiously improving or if the ilness has sort of "stabilized" and if so how many points of the scale did they go up?
from her twitter account: https://twitter.com/kaethewitthoeft
... 2 severely ill daughters who are in complete remission due to antiRETROvirals
 

junkcrap50

Senior Member
Messages
1,321
Update: Descovy did nothing for me
I guess I should provide an update too on my experience with 9 months of Descovy.

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.

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.

In the end, I had no change or improvement from Descovy. I took it in total for 9 months with no effect and did not notice any changes when stopping it either. Any initial improvements that I wrote about above must have been placebo, attributed to something else, or just normal fluctuations in my CFS symptoms.