In Pursuit of ABX - May I have coffee with my milkshake?
Posted: Sat Sep 01, 2007 9:44 pm
I can't believe it's been 3 months (I'm tacking this on tonight 12/5/07) and we're on the eve of the day Kim will get her very first script for abx. It's been a long road; just getting to the starting line.
If you're interested in maybe understanding more about abx and you don't know where to start, begin here. You might also want to see Kim's Blog. This thread details my discernment on abx. It's a lot of reading, but the folks who have helped me in this thread are experienced, helpful and part of a family.
We are serious. Very serious about this treatment. The folks who are here, who have guided us are very serious about this, it's not just something to try. This is something to live. This is better than finding pirates gold in your front yard. It's not easy and it requires a lot of will power just to get started. But we believe, we persist and we will cure Kim's MS and along the way we will work to help others learn that MS is not an incurable illness. Peace, Ken
Before I really start this post, I want to be clear about who I am and what my motivation is. Some of you have read my posts over the last year or so and I also know that I’ve not been the most “regular” TIMS member, but I’m not a newbie.
Who I am
My name is Ken. I don’t have MS. My wife is Kim, she does have MS. As best as I can, I accept MS as “our” MS and though I don’t have to directly experience this illness, I do my damned best to feel it and make it ours. I genuinely believe that together Kim and I can beat MS. This all might seem to be more properly posted in the “introductions” forum, but when I get to the real purpose of this post, it will make sense why I put it here.
I am not a medical expert and I’ve noted this in my 101 and 102 posts. I’ve done my best to learn about MS and try to take my understanding to a higher level and to share what knowledge I have gathered with others, hence the 101 and 102 post. While these posts take a definite autoimmune slant, this is all that there has been to know and I’ve done the best I can to understand these things. I am definitely open to other ideas.
My Motivation
I don’t post stuff to try to be smart; I am not angry or bitter and looking for a fight. I’m here to do the best I can to learn about and give Kim the best help I can provide. I have been called an “accountant”. I am an accountant. I’m a CPA and I work for a small non-profit organization that is trying to make the world a safer place by spreading the concept of community policing. I’ve been trained as an auditor and like any medical researcher, I ask questions and skepticism is a natural way to think – I prefer to know and see that the answer works a few times before I accept it and I like to know that the answer is consistent with other known answers. I am also coming to realize that I can never have perfect knowledge, but one wants to be extra careful when dealing with the health of your greatest love. I find this effort extremely humbling, I don’t ask questions to be a smart ass; I ask questions to more fully understand what I cannot fully comprehend. I am doing the best I can for Kim. I am deeply sorry if I have offended anyone at TIMS.
Why Am I Posting This Today
Kim’s just now recovering from her 5th Novantrone infusion. The doctor who has been conducting this is a Hematology Oncologist, which means he isn’t Kim’s Neurologist and might be open to the idea of talking with me about Doxycycline and Azithromycin. There is a small window of time over the next 3 weeks when Kim will be seeing the Oncologist and if I spend the next 3 weeks reading, we might miss an opportunity. I have read a lot of stuff about the ABX treatment and there is a lot more I have not gotten to. I feel as if I’m in a race to understand, and this post represents a request, if for nothing else to be pointed in the most current/right direction.
A brief personal experience. I’ve had a bad back since I was a kid. My mother had me doing the heavy lifting in her business and ultimately years of abuse led to serious disk issues. I’ve been to the Ortho and done the exercises and the physical therapy and then gotten re-injured and started the cycle again. Then I’ve spent years in chiropractic and ultimately found it made me worse. Then I returned to the cycle with the ortho. Along the way I had to give up most of my sports, often having one or more disk slips in any given year. I gave up golf. While this might parallel some of the experience of having MS, I eventually found my self defiantly telling the ortho I was done with physical therapy and done with the custom made back brace and that I was sick of this slip disk issue and I wanted another way. OMG! He very apprehensively said the lifelong missing magic words …… “well you could see a neuro surgeon for an opinion.” I had waited 20 years to hear that - there was yet a 3rd discipline that could help that I had never heard of! The neuro surgeon said I was an ideal candidate and I had a lamonectomy-distectomy and I can play golf now. My point is, there was a non conventional answer and I needed to push to make it happen. I did a lot of homework and I found the very most trusted surgeon in the city. This is my analogy. Kim hates this MS thing like everyone else here, but we’re ready to add something new. Since the surgery my best is a 79 I shot several years ago. I believe I can get Kim on the golf course one day.
What I have Read
I have completely read the NAC post at www.davidwheldon.co.uk/NAC.html
I have completely read the thread on “David Perlmutter’s “Letter to Doctors and Patients”
I have completely read the thread on “MS/Infection”
I have completely read the thread on”Long-term(?) abx Treatment with Roxithromycin for MS”
I have completely read the thread on “Are any neurologists taking notice?”
I have completely read the thread on “Chlamydia pneumoniae links”
I have completely read from www.davidwheldon.co.uk website the entire webpages on:
Ms-treatment1
Ms-cpn-qa.html
Hhv6.html
Chl_vasc.html
Supplement_rationale.html
Peer-review.html
Vit_D.html
I have also completely read the home page for CPn Help
The complexity and confusion I’m experiencing is that there is a lot more, and it only multiplies when I start following links. I also have a complete copy of the CPN handbook that’s 67 pages long and I’ve only made it to page 3.
I completely respect this concept otherwise I’d not be putting this kind of energy into it. It's just that I’m not a doctor, and I can’t just learn all this immediately and I can’t find a clear and organized way to review the info. But, I’m trying and I won’t give up.
Questions At My Current Milestone – I Know I Have Further To Travel
Based on what I have read here’s where my understanding draws a blank:
1) Kim’s been taking 4800 NAC’s daily for about a year. We don’t remember if she experienced the flu-like symptoms when she started and she clearly doesn’t have them now. Does this get in the way to thinking that the ABX treatment will work since some posts imply that the flu-like symptom means that the treatment is working?
2) Kim’s neurologist is very conservative. For example, he won’t give any opinion on supplements, saying “they neither benefit nor harm” from the MS perspective. We disagree as can be clearly seen from our experience with Ascorbic Acid. However, we don’t discount the value of the long-term relationship with our neurologist and we don’t want to burn that bridge as a cost of trying something new. We’re now on Copaxone and just now working through our 5th Novantrone infusion.
a) Can these therapies be continued with Copaxone and Novantrone? I have read that Loriyas was using Copaxone and ABX at the same time.
b) We are certain that our neurologist will not help us with ABX. Do we have to tell him? Like I said we have a long history with him and don’t want to burn the bridge. Is the Hematology Oncologist likely to take an interest in ABX, or is his relationship with our referring neurologist likely to mean he’s going to “punt”. Is it best to take this to an internist or an immunologist?
c) None of what I have read describes the test for CPN. I have read the words “Lumbar Puncture” which honestly sends chills down my spine. Who do we call? Is it painful? I’ll drive to Tennessee if I have to, but is this the only way to get the best and most sensitive test done and does the amount of NAC we’ve been taking negate this effort?
I have a bunch of other questions but they are more curiosity and I don’t want to be annoying. I’ve narrowed down my inquiry to the very most basic issue. How do we get tested without ruining our existing medical relationships or discontinuing existing treatments?
Other Disclosure
I’m also interested in Tovaxin. If the concept of persistent Chlamydophila pneumoniae is the cause and perpetuating agent, I realize that Tovaxin is only another way to deal with the effect, albeit a seemingly pretty effective way. I’m fine with that. May I have cofee with my mikshake?
napay, now signing as Ken
If you're interested in maybe understanding more about abx and you don't know where to start, begin here. You might also want to see Kim's Blog. This thread details my discernment on abx. It's a lot of reading, but the folks who have helped me in this thread are experienced, helpful and part of a family.
We are serious. Very serious about this treatment. The folks who are here, who have guided us are very serious about this, it's not just something to try. This is something to live. This is better than finding pirates gold in your front yard. It's not easy and it requires a lot of will power just to get started. But we believe, we persist and we will cure Kim's MS and along the way we will work to help others learn that MS is not an incurable illness. Peace, Ken
Before I really start this post, I want to be clear about who I am and what my motivation is. Some of you have read my posts over the last year or so and I also know that I’ve not been the most “regular” TIMS member, but I’m not a newbie.
Who I am
My name is Ken. I don’t have MS. My wife is Kim, she does have MS. As best as I can, I accept MS as “our” MS and though I don’t have to directly experience this illness, I do my damned best to feel it and make it ours. I genuinely believe that together Kim and I can beat MS. This all might seem to be more properly posted in the “introductions” forum, but when I get to the real purpose of this post, it will make sense why I put it here.
I am not a medical expert and I’ve noted this in my 101 and 102 posts. I’ve done my best to learn about MS and try to take my understanding to a higher level and to share what knowledge I have gathered with others, hence the 101 and 102 post. While these posts take a definite autoimmune slant, this is all that there has been to know and I’ve done the best I can to understand these things. I am definitely open to other ideas.
My Motivation
I don’t post stuff to try to be smart; I am not angry or bitter and looking for a fight. I’m here to do the best I can to learn about and give Kim the best help I can provide. I have been called an “accountant”. I am an accountant. I’m a CPA and I work for a small non-profit organization that is trying to make the world a safer place by spreading the concept of community policing. I’ve been trained as an auditor and like any medical researcher, I ask questions and skepticism is a natural way to think – I prefer to know and see that the answer works a few times before I accept it and I like to know that the answer is consistent with other known answers. I am also coming to realize that I can never have perfect knowledge, but one wants to be extra careful when dealing with the health of your greatest love. I find this effort extremely humbling, I don’t ask questions to be a smart ass; I ask questions to more fully understand what I cannot fully comprehend. I am doing the best I can for Kim. I am deeply sorry if I have offended anyone at TIMS.
Why Am I Posting This Today
Kim’s just now recovering from her 5th Novantrone infusion. The doctor who has been conducting this is a Hematology Oncologist, which means he isn’t Kim’s Neurologist and might be open to the idea of talking with me about Doxycycline and Azithromycin. There is a small window of time over the next 3 weeks when Kim will be seeing the Oncologist and if I spend the next 3 weeks reading, we might miss an opportunity. I have read a lot of stuff about the ABX treatment and there is a lot more I have not gotten to. I feel as if I’m in a race to understand, and this post represents a request, if for nothing else to be pointed in the most current/right direction.
A brief personal experience. I’ve had a bad back since I was a kid. My mother had me doing the heavy lifting in her business and ultimately years of abuse led to serious disk issues. I’ve been to the Ortho and done the exercises and the physical therapy and then gotten re-injured and started the cycle again. Then I’ve spent years in chiropractic and ultimately found it made me worse. Then I returned to the cycle with the ortho. Along the way I had to give up most of my sports, often having one or more disk slips in any given year. I gave up golf. While this might parallel some of the experience of having MS, I eventually found my self defiantly telling the ortho I was done with physical therapy and done with the custom made back brace and that I was sick of this slip disk issue and I wanted another way. OMG! He very apprehensively said the lifelong missing magic words …… “well you could see a neuro surgeon for an opinion.” I had waited 20 years to hear that - there was yet a 3rd discipline that could help that I had never heard of! The neuro surgeon said I was an ideal candidate and I had a lamonectomy-distectomy and I can play golf now. My point is, there was a non conventional answer and I needed to push to make it happen. I did a lot of homework and I found the very most trusted surgeon in the city. This is my analogy. Kim hates this MS thing like everyone else here, but we’re ready to add something new. Since the surgery my best is a 79 I shot several years ago. I believe I can get Kim on the golf course one day.
What I have Read
I have completely read the NAC post at www.davidwheldon.co.uk/NAC.html
I have completely read the thread on “David Perlmutter’s “Letter to Doctors and Patients”
I have completely read the thread on “MS/Infection”
I have completely read the thread on”Long-term(?) abx Treatment with Roxithromycin for MS”
I have completely read the thread on “Are any neurologists taking notice?”
I have completely read the thread on “Chlamydia pneumoniae links”
I have completely read from www.davidwheldon.co.uk website the entire webpages on:
Ms-treatment1
Ms-cpn-qa.html
Hhv6.html
Chl_vasc.html
Supplement_rationale.html
Peer-review.html
Vit_D.html
I have also completely read the home page for CPn Help
The complexity and confusion I’m experiencing is that there is a lot more, and it only multiplies when I start following links. I also have a complete copy of the CPN handbook that’s 67 pages long and I’ve only made it to page 3.
I completely respect this concept otherwise I’d not be putting this kind of energy into it. It's just that I’m not a doctor, and I can’t just learn all this immediately and I can’t find a clear and organized way to review the info. But, I’m trying and I won’t give up.
Questions At My Current Milestone – I Know I Have Further To Travel
Based on what I have read here’s where my understanding draws a blank:
1) Kim’s been taking 4800 NAC’s daily for about a year. We don’t remember if she experienced the flu-like symptoms when she started and she clearly doesn’t have them now. Does this get in the way to thinking that the ABX treatment will work since some posts imply that the flu-like symptom means that the treatment is working?
2) Kim’s neurologist is very conservative. For example, he won’t give any opinion on supplements, saying “they neither benefit nor harm” from the MS perspective. We disagree as can be clearly seen from our experience with Ascorbic Acid. However, we don’t discount the value of the long-term relationship with our neurologist and we don’t want to burn that bridge as a cost of trying something new. We’re now on Copaxone and just now working through our 5th Novantrone infusion.
a) Can these therapies be continued with Copaxone and Novantrone? I have read that Loriyas was using Copaxone and ABX at the same time.
b) We are certain that our neurologist will not help us with ABX. Do we have to tell him? Like I said we have a long history with him and don’t want to burn the bridge. Is the Hematology Oncologist likely to take an interest in ABX, or is his relationship with our referring neurologist likely to mean he’s going to “punt”. Is it best to take this to an internist or an immunologist?
c) None of what I have read describes the test for CPN. I have read the words “Lumbar Puncture” which honestly sends chills down my spine. Who do we call? Is it painful? I’ll drive to Tennessee if I have to, but is this the only way to get the best and most sensitive test done and does the amount of NAC we’ve been taking negate this effort?
I have a bunch of other questions but they are more curiosity and I don’t want to be annoying. I’ve narrowed down my inquiry to the very most basic issue. How do we get tested without ruining our existing medical relationships or discontinuing existing treatments?
Other Disclosure
I’m also interested in Tovaxin. If the concept of persistent Chlamydophila pneumoniae is the cause and perpetuating agent, I realize that Tovaxin is only another way to deal with the effect, albeit a seemingly pretty effective way. I’m fine with that. May I have cofee with my mikshake?
napay, now signing as Ken