Kolibri anyone have success

[neweimear]

Hi, has anyone on here gone to Kolibri and had success? Is it a reliable and safe clinic? I read their opening hours are 9 to 5, so what if you became unwell in the 24 hours after infusion? You would be in trouble. Is OMI more reliable. I live in Ireland so travelling to the States would be super expensive.I am desperate, suicidal alot of the time. Please give me hope..

 

[BurnA]

Hi Eimear,
I don't remember too many stories from Kolibri on here. I think the best hope is to wait a few months and see what the results of the phase III trial from Norway reveals. Also the cyclo trial results will be out before that.
Anything you hear from Kolibri will be anecdotal and while not necessarily incorrect, it won't provide the full picture.
I have heard stories of people responding and stories of people not responding so in that regard it is similar to what we would expect based on the phase II trial. But we don't know any numbers from Kolibri so it's impossible to form a clearer picture.

Regarding safety, I haven't heard anything bad. I think the biggest most likely risk in general is an infusion reaction so you would be monitored at all times during infusion. But others on here know more about that. Some people do seem to get worse after an infusion, And it's worth mentioning that Fluge and Mella don't recommend rituximab outside of a clinical trial.

In general terms there hasn't been much news from OMI and ritux recently that i have noticed.

There is a wealth of information in general on rituximab on these forums so if you are considering it I recommend reading the relevant threads.

Hang in there.
Slán

 

[Gingergrrl]

Hi, has anyone on here gone to Kolibri and had success? Is it a reliable and safe clinic?

I believe that @Marky90 and @deleder2k could probably give you some info on Kolibri (hope you guys don't mind me tagging you ).

Is OMI more reliable.

I have zero info on Kolibri so cannot comment on them but I will be getting Rituximab through my doctor at OMI within the next few weeks. Although I will actually be doing the two infusions at a local infusion center in my city where I have done 10-11 months of IVIG vs. traveling up to OMI. In my case, I live in the same state as OMI but about 7 hrs south of them by car and it is easier for me to do it locally.

I am desperate, suicidal alot of the time. Please give me hope..

I am so sorry to hear about the level of despair that you are feeling right now and am so glad you reached out to this board. Please hang on and hope is out there. You have a beautiful daughter in your avatar (assuming that is your daughter)? Is traveling to the US for treatment an option?

 

[neweimear]

Travelling totowould the States would be a last resort but I would if I had no other option. I suppose I best wait until phase 3 results are out and then hope that rituximab may become more widely avaiable.

 

[deleder2k]

@neweimear, sad to hear that you are having a hard time.

If you live in Ireland I would travel to Stavanger, Norway and pay 35% of the cost to get the infusions. If you have the capacity you can fly back straight home after the infusion. If not, you can spend the day in an hotel. Getting treatment in California would probably require you to stay there for a few weeks, and then fly back every 3 months. Cost of travel, cost of medicine and cost of treatment is way higher in California. Rituximab is much cheaper in Europe, and the infusion cost is much lower. You can get a roundtrip ticket to Stavanger via Amsterdam for €200.

You could wait until early 2018 to see the results. You could also call them and arrange for a consultation before that happens. Then you could have the consultation, take all the required blood tests and get the "green light". Then you could wait until the study is published and call them to arrange an infusion.

If you have questions about it I would call them at +47 52 69 69 69.

 

[JES]

Hi, has anyone on here gone to Kolibri and had success? Is it a reliable and safe clinic? I read their opening hours are 9 to 5, so what if you became unwell in the 24 hours after infusion? You would be in trouble. Is OMI more reliable. I live in Ireland so travelling to the States would be super expensive.I am desperate, suicidal alot of the time. Please give me hope..

The success rate among those who reportedly tried Rituximab on this forum is not high. According to this post, only 1 out of 14 have had a very good response, another 1 or 2 had a mild response. The Norwegian patients seem to have a better response to it, for whatever reason.

 

[Basilico]

@neweimear , there are several really impressive top scientists and doctors in the process of researching, experimenting, and about to share findings. This is absolutely the most exciting time for people with CFS - we are all on the edge of our seats because it finally seems like some answers are forthcoming. There is a lot to be hopeful about right now. If you want to investigate these fantastic scientists a little to see what they are working on and why you should remain hopeful, I posted a few links below.

http://forums.phoenixrising.me/inde...-biomedical-cures-and-hope.52053/#post-860684

*Ron Davis is currently hard at work trying to come up with an affordable cure and there are many threads on PR about the status of what he's discovering. Not only is he a brilliant researcher, but his own son has very severe ME, so I know he is personally motivated to find a cure.

http://www.nofone.org/dr-naviaux-q-and-a-suramin (focus is on autism, but has implication for CFS, which is mentioned toward end of interview)

https://healinghistamine.com/harvar...an-elzakker-chronic-fatigue-vagus-nerve-link/ (Van ElZakker is currently doing a pilot study at Harvard to validate his hypothesis)

 

[Marky90]

Hi there!

DelederK posted nicely about this.

Personally if had not already tried Rituximab, i would wait to take it privately until phase 3 is out. There`s a policy on this forum not too talk about the details here, so you could send me a PM for more information.

I sympathize with feeling desperate, but its also hard standing at the crossroads if it doesn't work. Both mentally and economically. Hence, knowing approx what the response probability is, might be preferable. Unfortunately we don`t know that yet.

 

[neweimear]

@Marky90 thankyou....but I cant work out how to send PM....can u tell me what to do. Sorry!!!

 

[deleder2k]

Click on a user and click "start a conversation", @neweimear

 

[Gingergrrl]

There`s a policy on this forum not too talk about the details here

Do you mean not to talk about the details if you are in a Rituximab study or not to talk about Rituximab in general? I have had many people contact me who have tried Ritux (in the U.S. or at Kolibri) but they do not feel comfortable sharing their experiences publicly and I was not sure why b/c none are part of any study.

Is there a policy that I am not aware of b/c I planned to continue to share my entire Ritux journey as I have been doing in another thread (but if I were part of a study, which I'm not, then I would of course keep it quiet). Thanks!

 

[Kenny Banya]

@neweimear Getting treatment in California would probably require you to stay there for a few weeks, and then fly back every 3 months. Cost of travel, cost of medicine and cost of treatment is way higher in California.

It would also require you going through USA customs.
Oh. What. Fun....