PK Protocol

[lakemarlene]

New to the ALS world with my sister being diagnosed 5/2012. She is undergoing treatment called the PK Protocol (named after the researcher Patricia Kane). Has anyone out there had any experience with this protocol? Sister previously had Lyme in 2009 and when these symptoms began last fall Drs. thought is was recurring Lyme and she started on iv antibiotics. Followed with a few other alternative therapies that she has done for the past 30 years but symptoms kept progressing. Her Dr. recommended PK protocol and although symptoms have advanced, treatments can take a while to take effect. Does anyone have feedback on this? Thanks.

[Barbie]

never heard of it. I looked it up and sorry to say, sounds like a good way to get money out of sick people. Many here (my hubby included) have tried alternative treatments and medicine. sadly, nothing has ever worked but there are always people out there ready and willing to promise a cure.

who are these doctors? is she going to an ALS clinic? they will have more info on what will truely help her, and legitimite trials she can take part in.

[Nikki J]

Oh my goodness! Also looked it up and it totally sounds like snake oil! This protocol supposedly treats everything from als to MS to alzheimers to Traumatic brain injury to eye problems. This person claims to have a PhD but will not say in what field or from what school. She was apparently treating people in Pennsylvania until a tv station did an expose on her. Please please get your sister to a good als clinic! I would do anything to save my sister who has als but this looks like a waste of time energy and money!
I am so sorry!

[Nikki J]

sorry guys! I got moderated, agree with barbie totally!

[HelenL]

I've also never heard of it... is your sister going to an ALS clinic? That would be her best bet for getting services. good luck and welcome to our forum familiy.

[sadiemae]

From a little research, this has been around for a long time. If it worked, we all would know about it.

[ghost_writer]

Search: lymenet europe pk

She is not an MD. You can read about her investigation on above forum.

Bottom line: false hope

[Danijela]

Sorry about your sister's diagnosis. "Her Dr. recommended PK protocol and although symptoms have advanced, treatments can take a while to take effect." I can say with certainty that no ALS clinician or even a general neurologist would recommend this. Agree with ghost writer - false hope, hence 'it can take a while to take effect'. Is she paying for this?The appropriate route is to have a multidisciplinary team at an ALS center, especially as she is progressing and will need to make adjustments. There is no cure for ALS but with appropriate support the quality of life can be improved.

It always saddens me to see this kind of thing happening. Dani

[lakemarlene]

Thank you all for your taking time to respond. I guess it is human nature to cling to possibilities, beating the odds and being the exception - even in full view of certain realities. I know I am just not ready to accept the future of ALS in our family. I am gaining insight and support from all of your forum postings on so many subjects. Thank you so very much. We do end up in this together don't we - coming from all corners. I have not really seen many posts from other European countries, mostly UK. Are there places in the world free from ALS?

[ottawa girl]

Originally Posted by lakemarlene

Thank you all for your taking time to respond. I guess it is human nature to cling to possibilities, beating the odds and being the exception - even in full view of certain realities. I know I am just not ready to accept the future of ALS in our family. I am gaining insight and support from all of your forum postings on so many subjects. Thank you so very much. We do end up in this together don't we - coming from all corners. I have not really seen many posts from other European countries, mostly UK. Are there places in the world free from ALS?

I'm not ready either to face this ALS thing (who would be?). I'm in Canada - I note many UK, Serbia and Aussies & New Zealanders are posting too.

If you find a country with absolutely no ALS - I'll be happy to go there and drink the water! I also checked PK - but being new, to ALS and this forum, I lacked the courage to tell you I think PK is suspect at best.

I hope your sister and you will find an ALS Clinic you like and which is close to home. You sound like a great sister - my two sisters are amazing too. I could not have gotten through the initial shock period without either of them.

God bless sisters!