Karen...barrowinnovations...where are you???

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Jun 17, 2008.

  1. MamaDove

    MamaDove New Member

    Hi Hon,

    I have been on here daily and just knew something/someone was missing and then it hit me...Where is Karen???

    Have you gone away, on vacation perhaps?

    If/when you have time could you just lemme know how you are doing please...


  2. MamaDove

    MamaDove New Member

    Did we miss something?

    Bumping to put back on the first page...

    Hope to hear from them...We miss you allready :)
  3. Babs41

    Babs41 New Member

    I was wondering the same thing about karen and woofmom. Hope they are still here!

  4. jmq

    jmq New Member

    Hope they check in soon

  5. Catseye

    Catseye Member

    Sorry, I was just getting some things done and I have something new that is occupying all my time - my life! Most of my symptoms have been drying up, finally, and I'm out of my house more and more. I've waited a loooong time for this to happen! It's about time! I've got a lot to do, I've had my life on hold for 5 years and now it's time to put it back together. I'll be starting my own thing soon, but it will be easy to find.

  6. richvank

    richvank New Member


    It's great to hear that you are doing so well! Sounds as though fixing the gut issues was the finishing touch.

    I'm wondering if you still think that treating the methylation cycle block was a significant contributor in your treatment program.


  7. Catseye

    Catseye Member

    Hi Rich,

    I know that the addition of the folate to my supplement arsenal was crucial in my healing - I'm still taking it. The difference between a day with folate and a day without it was a world apart. One of the first things I used to ask myself when I was having a bad day was had I forgotten to take my folapro? And the answer was usually "yes"! And I still have the second bottle of each that I bought a year ago. Definitely one of my cheaper supps.

    It really took a whole new arsenal to get the liver totally back on track, but it's nice to know it wasn't too difficult. It just took another major diet change and a little time with the new pills. And I like the fact that there are tests that can determine your particular situation and monitor your progress. It's really too bad the medical profession will never make use of them. They will just continue to milk people as long as they can.

    take care


  8. richvank

    richvank New Member

    Hi, Karen.

    Thanks for the response.

    As I receive more information from clinicians and from people on the MCB treatment, it is appearing more and more that the MCB is a critical part of overall treatment, but that some other components are likely to be necessary as well. I think it's like a train wreck. It's very important to fix the initial cause of the train wreck, such as loose spikes or broken ties, so that there won't be another wreck, but at the same time, in order to clean up the existing wreck, one has to do a lot of other things beside fixing the track. Of course, the human body has a lot of regenerating power that it can use once the basic problem is corrected, but things like viruses and bacteria also have a lot of staying power and strategies to counter the immune system's effort. Once they become entrenched, the immune system may need some help to get rid of them.

    I know what you mean about the pharmaco-medical establishment not being very amenable to using nonpatentable substances. One interesting possibility here, though, is that Merck Germany has the patent on the method of producing FolaPro (Metafolin), so there may be a profit incentive for them to promote an FDA-approved "medical food" to the doctors.

    Time will tell how this shakes out. Thanks again.

  9. redhummingbird

    redhummingbird New Member

    It's great to hear that you have your life back! Very inspiring! Glad to see you back hear. You have a lot to offer.

    How did you know that you needed to do the methylation block and add folate?

    I've reached a bit of a plateau. Am on antibiotics but it seems the mitochondria treatments aren't working..

    Also, I don't get any sort of boost from methylcobalamin shots.

    Any ideas, suggestions?

    Looking forward to seeing your posts again!
  10. Catseye

    Catseye Member

    I had a feeling the methylation protocol would help because it contained folate and it was aimed at the liver - both a problem for us. The folate is a body-ready or bioactive form of vitamin B9. Our bodies convert B9 into folate. Or, that is, a HEALTHY body converts it into folate. And by then, I already knew that my body was having a problem making chemicals it needs to make, like certain forms of vitamins and some coenzymes like coq10.

    Looking back, I should have added all the Bs that I eventually did - like pantethine (bioactive form of B5), p5p (bioactive form of B6), methylcobalamin (I like using cherry flavored sublinguals rather than the shots), biotin, inositol, etc.

    I would go after the gut dysbiosis and digestion first. You obviously have it if you have to take supplements and especially if they aren't working like you think they should. And you already know antibiotics will screw up the gut. Do the stool analysis thing and get a line on what to do to get your liver back on track. Get your free phone consultation from my expert on the stool analysis thread and see what he says. If you've tried some of this simple stuff and it didn't work, you are merely past the point of no return and need some more complicated stuff. Don't give up, just search for your expert. I found mine and he's doing just what I expected him to do - he's fixing me.

    It's so weird to see this much improvement after yet another diet change and more pills after I tried to hard to do it myself for so long. I just didn't have tests to go by. Probably people with a mild case of CFS or those just starting out with it can fix themselves with simple dietary changes and a few supplements, but if they don't work, then dig deeper. I was like you, I could only get so far with the mitochondria supplements, but I still had problems.

    Your gut dysbiosis will hold you back. If you don't fix it, you won't get out of this rut. Your biggest mistake could be assuming you don't have it so be careful what you assume about your body. Just because things are going in and coming out like normal does not mean that digestion is working. If it was, you would be out of this rut just by eliminating unhealthy foods. The gut is an extremely complex system that needs specialized supplements to treat it and that's what's so elusive about this disease. Took me 5 years to figure that out but at least I finally did.
    Could have been worse, it could have taken me 20 years!

    good luck

  11. MamaDove

    MamaDove New Member

    The first HOORAY is for your NEW LIFE...I knew of all of us YOU would be the one to do it FIRST!!!

    The second is that you came back to see us, and on the most perfect day...I swear I was thinking of sedning up smoke signals to find you fast...

    I just got my GENOVA tests back today and are they revealing, none of what I suspected and some of what I didn't...Great ;)

    I just picked them up and the words, IBD, bowel cancer and others jumped out at me quite quickly, but then again so did BILE ACIDS, FAT MALABSORPTION and EOSINOPHILS (which by the way were always problematic but one test that my doc always IGNORED, bum) So I jumped on here to find you because once I post these results I was going to beg you for some input...I made the follow-up with my doc who said he was shocked by ALL of the positive results but one MAJOR one is an issue...I see him Wednesday and will get his opinion (first doc I ever had who knew something and who agrees with us about the gut and that all these illnesses are related to such, heck, first one to entertain ordering the test) I am betting that cleaning up my diet for a year and a half has likely made my gut less problematic, hence all the good results BUT I am showing E.Coli and my Calprotectin level is 216...Ouch!!!

    So when I can think a bit clearer to type all the info (you recall doing that for us, don't you?) I will give you the details and if you have time, I would really like to hear what you think...Remember I am willing to do anything diet-wise to rectify this...Supplements will be 'iffy' unless I know for sure they won't hurt me but I can always go to my naturopath first and muscle test...I started the LDN (low dose naltrexone) and am showing much improvement in one week...I now wonder if the LDN (which works by enhancing the immune system) is actually cleaning up areas of my gut. I have a THEORY, I will include that when I post my results...Look for my post in the next few days, likely title it STOOL TESTING RESULTS...

    This really takes precedence and I should take the time to do it right now but I was at the VA all day with hubby and that just drains all that's good outta me...

    Will write again soon and once again, I am doing the happy dance for you...I just knew you figured it all out...I think of you constantly and although I am on the same wavelength as you (we seem to be) I am falling behind since I have trusted 'experts' for so long...They made me so sick that I am still fighting quite a battle back to good health, but I promised myself, and my husband, I would get the bottom of all this...Ahhhhh, stool testing...Just fascinating!!!

    [This Message was Edited on 06/23/2008]
  12. Catseye

    Catseye Member

    Hi mamadove,

    Thanks for the moral support! You're getting me all hyped up!

    I don't know how much I can be of help on these stool tests unless you have the same things wrong that I did. The doc has been explaining what's happening based on my levels of stuff and what to do about it. But I still don't really understand everything myself. I haven't bothered to really research it too much. The doc is obviously on top of it all and so I'm spending less time on my computer and letting him handle everything. It's almost like a vacation! I still want to hear your results, though, and what you're supposed to do about it. It's all so interesting. All that stuff on the back of the test explaining the enzyme and bacteria levels and all - it's so new to me. Like the e coli being referred to as a good bacteria!

    I was a bit worried about the supplements, too, since my liver was so sensitive. But I just tried like one pill instead of the five I was supposed to take at one time and since it didn't bother me, I just started popping them. I also figured the doc could tell from the tests what was happening and the stuff he was giving me was going to cure the liver's "overly sensitive to everything" problem. And I was right. None of the supps he gave me bothered me. I did develop a dehydration problem after about a month because of the diuretic effects of some of the herbs in a couple of them, but I just stopped the one and cut down on the other and now that problem is licked.

    The muscle testing should help you alleviate the terror of trying something new. I didn't even think of that or I would have done it myself. Sounds like you're on top of your own condition now. And yes, I think we've both wasted lots of time and money on "experts". Isn't that a laugh? They're only experts in the drugs they sell and those are things that can't cure us. Too bad they're experts in crisis management and ignoramuses in the cases of chronic diseases like this one.

    The worst part of that was figuring that out. Until I knew what doctors really do (sell drugs, tests and surgery ONLY) and don't do (tell you how to get healthy) I had complete confidence in them. I thought they were there for my health. Until we figured that out, we were at their mercy and all they did was make us poorer and probably sicker, too. Well, at least we got to the bottom of it! Now it's all uphill. It's probably still going to be slow and inconvenient, but anything is worth getting over this.

    So it's all good, we're on the same planet doing the same happy dance!

    looking forward to more details so I can compare them to mine

    take care


    almost forgot to add - last week, I went to a doctor's office to get more bloodwork done for Dr. Farr and I picked up a stomach flu virus there. I crashed the next morning from being sick and was in bed for a couple of days and had diarrhea and all for 5. But my no carb diet food - chicken, veggies and nuts - was making my stomach hurt. Stomach flu just means you have a virus that is inflaming your stomach and intestines and you're supposed to eat stuff like crackers and clear broth and clear juices. So I had to back off the diet for a few days and I had some carbs - like puffed rice cereal, rice crackers and chicken rice soup.

    I experienced a huge surge in energy from eating the carbs, even though it wasn't much - I made sure of that - but now, I'm dying for carbs again! It was almost like giving me a taste of some radical new recreational drug and now I'm hooked! So I'm ready for the diet to be over. Problem is, I just got another test result in my email this evening and it looks like from a preliminary test, I just tested positive for the lyme disease bacteria. I'll know more tomorrow when I talk to Dr. Farr again. You can be sure I'll post about it. At least he sounds like he's on top of that problem, too, so I'm not too worried about it. Just another challenge as far as I'm concerned. I'll whoop it, too, just like I'm whooping everything else. HA!!

    see ya!

  13. xchocoholic

    xchocoholic New Member

    I always enjoy your posts.

    When I read your comment about carbs being drugs, I just had to add my story.

    I went to an open house at a HFS on Saturday and they had the best GF cupcakes I'd ever eaten. I was craving another one soooo bad today I considered driving 30 minutes to get one.

    I've only had grains 3 times since November 2007. But everytime I eat these, I find myself Jonesing for more for several days afterwards.

    I crave fruit, but never to this extent. Weird, huh ? Once a junkie always a junkie. LOL Sugar junkie that is ...


    [This Message was Edited on 06/24/2008]
  14. tansy

    tansy New Member

    Hi Karen

    It’s good to see you back but even better to learn the reason for your break from posting here. Congratulations on getting your life back. Thanks also for all the info you post; it’s sufficiently extensive to allow us to understand whether it might help us individually or not.

    Some of the approaches you have used have been successful in treating chronic illnesses for decades; but they involve looking at treating illness from a different perspective.

    Like Woofmom you self treated as far as you could on your own and then when you needed more information opted for a health professional who shared your preferences and who subsequently was able to help you move further forward.

    Over the years there have been many similar reports of people getting their lives back; I am sure this new update on your progress will inspire others.

    Hi Rich

    I really liked your description of how we need to treat both the causes and the consequences of ME, CFS, and FM. This has become clear on many of the patient message boards I’ve read since becoming able to use the internet and it proved important for me personally.

    Tc, Tansy