If Not Us, Then Who?

[DianaW13]

Hi Laura,

Many, if not all, of us have felt these feelings at times. I belong to a forum here in Canada (Arthritis Society). Whenever I have mentioned the AP protocol, I have been shut down by fellow patients for various reasons. It is difficult for me to read about the suffering that they endure, even while on conventional meds – and the treatment failures they experience as described by Dr. Brown.

I have regular appointments with the the Arthritis Society here in my home town. Not so much for myself, but because I am trying to get these people to see how AP is working for me. I think I am beginning to get their attention. My physiotherapist there looked at me in wonder one day and said “you don’t understand, no one goes off the conventional meds and gets better”. By keeping in touch with this organization, I was asked (along with 5 other patients) to visit the local university where they teach physiotherapy. I was the only one of these patients taking the fewest drugs and having the best results. So much so that I was given several minutes to address these future therapists about the AP protocol and where to go for further info. Several commented that they would be buying the book.

Anyways, my point is Laura, we are advocates everyday, everywhere we go. There are many ways that we can spread the word! And, seeing is believing, as so many who witness my improving health. It is a hands on therapy though, so I always tell people that – they will have to really come to an understanding of how it works. Perhaps this is where so many get discouraged and go no further. I am fortunate to have a doctor who prescribes the antibiotics for me, but it is me (with the help of all those on here) who is ultimately carrying out the therapy (and yes, Dr. S has been a great help too!) Most people are afraid to go against the tide though, and doctors are very stuck in the whole “autoimmune” thing, just as Dr Brown had experienced.

All the best to you Laura. Please don’t get discouraged! Just keep looking for opportunities.

Diana

[A Friend]

Diana,

So good to “meet” you via your post. You sound like the perfect ambassador for Dr. Brown’s work. Sometimes, just a few positive words and the apparentness of the patient getting better speaks volumes, and has a greater positive effect than too much said.

Wonderful memories of time spent in Canada (vacations and husband’s business trips) over the years from Vancouver to the Northeastern parts, including a few camping vacations with friends when our children were growing up (my husband bribed me!).

Best to you always,
AF

[laurawm]

Thank you all for your thoughtful encouragement. I believe most of us have the same desires and thoughts, it’s just not always clear cut the best way for each of us to be an advocate. To some degree, I think it depends on each individual – where a person is personally in dealing with their own disease, as well as personality and giftings. There is never just one way to go about something and some will always be drawn to supporting those already seeking treatment (such as by participating in this forum etc.) and then there are others that are good at getting the word out to the public (books, foundations, talking with conventional health care practitioners). The important thing is that we do not let the overwhelming majority of negativity discourage us from patiently and openly sharing our stories. What Diana has described is the kind of example I would hope to follow as I interact on an ongoing basis with my chiropractor, doctors outside of my ABX doctor, as well as my direct neighbor who is dealing with chronic health issues after having a known case of Lyme over 20 years ago – to consistently communicate about my disease and treatment in honest ways that are not pushy and then let things fall as they will. As Diana described, many times it is years before people begin to pay attention, but if we are open, loving, and confident even when met with negativity, I believe it can make a difference over time.

Thanks again! 🙂
Laura

[niteowl]

Hi Laura,
I’ve read that RA Warrior blog, too. It just goes to show that anyone can start a foundation. I don’t see anything that this foundation does other than ‘helps promote awareness. I’ve sent them a message inquiring exactly what is it that they do, not just their Tax filing status. No response. I think it boils down to funding for attending conferences and website fees.

I don’t get much from her blog other than as you pointed out, the feedback –sometimes.

I do think that if we put information out there somehow that it would in turn generate more people demanding AP from their Rheumies. And as the Rheumies became proponents of AP everyone would benefit. After all, hasn’t the FDA approved AP as a DMARD?

I noticed on RA W’s site that they would like to be voted as best Health blog and it made me think…
viewtopic.php?f=1&t=8532

Oh well- for now…

Diagnosed with RA in 2012
Fifth Disease in '03
Lyme? in 2000?
Had radioactive ablation of hyperactive thyroid in 1997
autoimmune thrombocytopenia resolved
Anemia resolved with treatment of RA with Minocycline
Blood type: B neg

Meds:
Minocycline 50mg once a week
Levothyroxine .88mg
Liothyronine 5mg
Methotrexate 20 mg once a week

Folic acid
B12
B6
Vit D
Biotin
Biosil
Cbd balm
Flexaril as needed
Aspirin
Benedryl
Ventolin inhaler
Lactibiane probiotic

[Pauyen]

Yep, felt the same way too and agree with the replies… It’s like fishing, you get a few nibbles and you give it a good yank. Problem is, there’s so few hungry fish about, so I gave up fishing.

[A Friend]

@niteowl wrote:

Hi Laura, I’ve read that RA Warrior blog, too. It just goes to show that anyone can start a foundation. I don’t see anything that this foundation does other than ‘helps promote awareness. I’ve sent them a message inquiring exactly what is it that they do, not just their Tax filing status. No response. I think it boils down to funding for attending conferences and website fees….. I do think that if we put information out there somehow that it would in turn generate more people demanding AP from their Rheumies. And as the Rheumies became proponents of AP everyone would benefit. After all, hasn’t the FDA approved AP as a DMARD? …

Niteowl, what you wrote (see red print above) certainly seems logical. I’ve been aware and involved with AP since early 1997. And it has been amazing how rheumatologists and other healthcare professionals have evaded being involved in AP (and how these doctors seem to know nothing of the things that would solve my problems). However, a few years ago minocycline was finally approved as a “dmard.” Some rheumatologists will prescribe it for patients that ask for it for a Dmard purpose. No doubt there are a number of APers who are using AP protocols and getting their med that way.

Realistically, the FDA seems very involved in what is approved and what is not — and not necessarily for reasons of safety and effectiveness. But this is not surprising, because I’ve been reading/researching daily for 20 years now. A case in point: If you have not viewed the online video about Dr. Stanislaw Burzynsky’s research and his having found a way to treat and cure many children of inoperable glioblastoma, at least 15 years or more ago, this is an education for all of us if we view this video with court proceedings, etc. showing the court case and prosecution of Dr. B. It is stilll not an approved treatment. Each time a suit has been filed and tried, the judge has found Dr. B “not guilty”, but the FDA has continued to bring other suits against him several times. Some of the children, now about 15 and 16 years old, testified on his behalf. There’s more to raise our ire …but if interested, you can view the free film “Dr Burzynski, the Movie”, 1 hr 48 min. long on your PC. If you do a search, the video will show up numerous places, but an easy and convenient link to view it is from Dr. Mercola’s link that shows up. The ACIM organization (recent online site is ACIM Connect) makes online accredited medical courses available for healthcare professionals, without the necessity of travel expenses or hotel accommodations. My holistic dentist where I used to live made me aware of this site last January 2012, and a meeting to be held in the DFW Airport vicinity in March 2012. Dr. Burzinsky was one of the guest speakers, and the organization awarded him the “Lifetime Achievement Award.” Also on this site are some of those outstanding physicians involved in the type medicine that has helped many make much progress with our chronic illnesses, including Lyme.

Just when I’m afraid I’ve read about or found all the answers I’m going to find, miraculously my eyes are opened even wider. I’ll be forever rejoicing at what I’ve learned over the past year, which is as profound as what I “finally” learned the year before. So many of the pieces of the puzzle are coming together. Filled with hope,
AF

[A Friend]

In a reply to Niteowl’s post, AF previous wrote (and a portion of it is copied/pasted below):

Realistically, the FDA seems very involved in what is approved and what is not — and not necessarily for reasons of safety and effectiveness. But this is not surprising, because I’ve been reading/researching daily for 20 years now. A case in point: If you have not viewed the online video about Dr. Stanislaw Burzynsky’s research and his having found a way to treat and cure many children of inoperable glioblastoma, at least 15 years or more ago, this is an education for all of us if we view this video with court proceedings, etc. showing the court case and prosecution of Dr. B. It is stilll not an approved treatment. Each time a suit has been filed and tried, the judge has found Dr. B “not guilty”, but the FDA has continued to bring other suits against him several times. Some of the children, now about 15 and 16 years old, testified on his behalf. There’s more to raise our ire …but if interested, you can view the free film “Dr Burzynski, the Movie”, 1 hr 48 min. long on your PC. If you do a search, the video will show up numerous places, but an easy and convenient link to view it is from Dr. Mercola’s link that shows up. The ACIM organization (recent online site is ACIM Connect) makes online accredited medical courses available for healthcare professionals, without the necessity of travel expenses or hotel accommodations. My holistic dentist where I used to live made me aware of this site last January 2012, and a meeting to be held in the DFW Airport vicinity in March 2012. Dr. Burzinsky was one of the guest speakers, and the organization awarded him the “Lifetime Achievement Award.” Also on this site are some of those outstanding physicians involved in the type medicine that has helped many make much progress with our chronic illnesses, including Lyme.

Just when I’m afraid I’ve read about or found all the answers I’m going to find, miraculously my eyes are opened even wider. I’ll be forever rejoicing at what I’ve learned over the past year, which is as profound as what I “finally” learned the year before. So many of the pieces of the puzzle are coming together. Filled with hope,
AF[end of previous quote]

Today is now Saturday, 01/19/2013, and there was very good news in an e-mail just opened… an article in Dr. Mercola’s newsletter, see link below: http://articles.mercola.com/sites/articles/archive/2013/01/19/cancer-doctor-burzynski.aspx?e_cid=20130119_DNL_art_1&utm_source=dnl&utm_medium=email&utm_campaign=20130119 . I am pasting it into a new topic so those who have not been following this thread may know of this wonderful turnaround. Hopefully, now, Dr. Burzynski’s work can go forward unimpeded and more and more children can be helped without the ongoing lawsuits by the FDA. Also, maybe now, Dr. Burzynski and other scientists can use the basis of his treatment for inoperable glioblastoma to make further strides in treatments for other forms of cancer and other diseases, using rearrangement of various of the amino acids needed for health and healing. AF

[Eva Holloway]

A Friend,
this is from Dr.Mercola site, it is good news for many cancer patiens. There is a big write-up on this.
Case Dismissed! Texas Ends 15-Year Fight Against Cancer Doctor Burzynski
glad he finally won after all that time.

Eva

Eva Holloway

[Author]

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