This Is MS Multiple Sclerosis Knowledge & Support Community

Hi Christian,

Can I ask how long you've been doing the IBT? I'm now on my third week have seen improvements, the main one being lots more energy.

In the second week I caught a bug and was in bed for most of the day. But was it a bug or could it have been that, as it's also a huge detox, I was just getting all the toxins out...? who knows?

Since the 'bug' I've had this extra energy and a much more positive outlook. I've also started to sweat, dream, my feet feel warmer in bed, no headaches, I feel like my posture is better too. My vision hasn't improved yet but I'm hoping that's to come.

Anyway, I'm pleased to hear that it's working for you.

Take care,
Belinda

no, my wife didn't use IBT, but from hemodynamic point of viev it has sense, I think.

to IbRiz

hello,
No i have never done IBT. truth to be told it is first time i even hear about it.

cheerleader wrote:Guys-it's best to just follow the Polish forum, collect data and wait and see on this clinic. This is all new.

I recommended Dr. Simka to Erika last year because I had met him, But now she and I are going to work to get LA docs involved, because she and Jeff don't want to have to go up to Stanford for check ups.
GO LOCAL!
cheer

The radiologist called today to confirm my wife's MRV for the 25th Of Jan. The dopplers will be done the same day at the vascular surgeons office. Then in person he will give us the results on the 28th. Go Local! Go Local!

Congratulations, kenneb9, and way to go being a supportive husband, caregiver and advocate for your wife. We wish her all the best.

Pam

Do you guys know how much it will cost here n socal?
i have a dear friend who is wheelchair boud. it will be so much easier for him to do it here.
Please keep us posted.
thank you that is a wonderfull news.

I agree with trying to find someone local, buy unfortunately we all don't have caregivers that can spend countless hours researching and speaking on our behalf. I've already had an appt. with one vascular specialist (what a waste of time) and have another appt. with a refferral to a 2nd next week. With brain fog and fatigue it can be very difficult communicating.. especially too when you lose track of a conversation (what was I just talking about???).. Soooooooo, finding a Dr. who is already accepting of ccsvi and has the skills to treat you will take the stress and frustration away. I've been declining and have close to ten years dealing with this, so I must keep all options open... If my only option is going to Poland, then I'll go.. I don't know if I can wait another year or more..

Anyway, below is another email from AMEDS. I hope they will release more information soon.

>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>

Dear John,

Since we are getting a lot of messages these days from potential patients from all over the world, I think I owe You a bit more information about the status of AMEDS project.
As it was said before, we are doing everything we can to get started as soon as possible.
We are not affiliated with Dr Simka facility and will be accepting patients in a fully equipped medical center near Warsaw – which should add comfort and convenience to patients either coming from abroad or from various locations in Poland.
Our team of doctors consists of MRI and Doppler specialists, neurologists, cardio surgeons, vascular surgeons, and support staff.
Aside from having all of them in the medical facility we are also planning consultations with visiting doctors whose opinion can be necessary in more complex situations.

The project is being prepared by experienced medical professionals and by other people like myself who are in charge of putting all necessary ingredients together:
- qualified doctors;
- top quality medical equipment;
- fully staffed and equipped medical center;
- procedures for admission, examination, diagnosis, treatment, post-treatment monitoring, release, all logistics;
- marketing;
- rationally justifiable pricing;
- overall organization;
- management.

As You can see, the project is quite complex, if one aims at consistently delivering high quality effective services to a large number of patients.

Once the preparation phase is finalized, we will start setting up the appointments, sending all necessary information, gather all relevant data prior to arrival, etc.

I hope this information explains the status of the project.


Best regards,


Martin Duszynski

colapesce wrote:Hi Christian,

Can I ask how long you've been doing the IBT? I'm now on my third week have seen improvements, the main one being lots more energy.

In the second week I caught a bug and was in bed for most of the day. But was it a bug or could it have been that, as it's also a huge detox, I was just getting all the toxins out...? who knows?

Since the 'bug' I've had this extra energy and a much more positive outlook. I've also started to sweat, dream, my feet feel warmer in bed, no headaches, I feel like my posture is better too. My vision hasn't improved yet but I'm hoping that's to come.

Anyway, I'm pleased to hear that it's working for you.

Take care,
Belinda

Hi Belinda

I've been on IBT for 1.5 months now. I don't know about your bug - maybe you are right you've been detox'ed

So far the following has happened to me after having been on IBT for a month:

* I sleep through the night without having to go to the bathroom
* I have more energy - I don't sleep during the day, because if I do I cant sleep at night
* When I get out of bed - I am immediately able to walk. Before I would have to hold on to stuff.
* No dizziness when getting out of bed
* My vision has improved
* My L'hermittes sign has faded - it's still there, but not at all as annoying as before
* I am getting better at remembering stuff
.... plus a number of other things

I still have problems with very dry eyes, and I still loose control of my left leg sometimes (not as bad as it used to be).

I'm hoping to find an interventional radiologist soon here in Denmark to get the liberation treatment (had the CCSVI diagnosis by dr Simka) - preferably just with ballooning.

christian

Hi from Canada,
I am interested in seeing Dr. Simka and Dr. Ludgya in Poland. What is the best way to contact them? Thank you for the info.
Athena

Athena wrote:Hi from Canada,
I am interested in seeing Dr. Simka and Dr. Ludgya in Poland. What is the best way to contact them? Thank you for the info.
Athena

Hi Athena!
You must contact Dr. Simka: mariansimka@poczta.onet.pl
Erika

Thank you Erica, Lucky Girl, I have emailed him. I hope that it does not take too long to hear back as his popularity is now well known and he is now incredibly busy. Probably still faster to see him than the waiting period in Canada with the research (2 to 4 years I've heard)and then the waiting lists for the procedure here in Canada.
Thanks again.

Athena wrote:Thank you Erica, Lucky Girl, I have emailed him. I hope that it does not take too long to hear back as his popularity is now well known and he is now incredibly busy. Probably still faster to see him than the waiting period in Canada with the research (2 to 4 years I've heard)and then the waiting lists for the procedure here in Canada.
Thanks again.

Hi Athena!
Well, you should know that it takes sometimes more than 2 weeks until he answers. He often gets about 100 e-mails a day. He is still answering by himself. He told me last Tuesday that he already has 500 patients on his list and he would have for sure another 100 until the end of week. He is schedulling for spring- summer 2011.
He is really very busy. He is doing Doppler tests to many patients during the day, procedures, post-op and in the evening and often during the nights answering our e-mails.
But he answers for sure!
Good luck!
Erika

Yes, I can confirm this: He usually answers e-mails in the evenings or w-end.

He is simply too busy with his work to check e-mails during the day and does it in slots.

One needs to be a bit patient and if you know this, you will no longer worry. He will answer you, he always does + he will not forget you. If you contacted him clearly requesting info, your name will be on his list and program.

And another tip: Try to keep e-mails AS SHORT AS POSSIBLE and stick to the key facts. Long e-mails will not help to get a quick reply.

Dear EWALALA

Very glad to hear about your successfully treatment, and it is very hard feeling that some people are sceptical, but it is normal because it is amazing, and above all you have the support of J. BEAL. His husband had the kindness to answer to my email when I ask him about his condition after the treatment. Be lucky and take care.

Hello evryone,
some more info 3 weeks after the procedure.

all improvments sustainable so far.

my eyes i think are getting also slightly better.
second time, we went with martin to this huge whole foods store, and after 30 min. i have not lost my eye sight.
before t would get blurry within 5-10 minutes. to the point that i woudl not be seeing faces (they had no distinguishable features, and i could not read any product info) since this happen now 2nd time that i dont lose my eye sight there. i could say that there is some improvment in that area too.