from fatigued to fantastic for real, updates

Discussion in 'Fibromyalgia Main Forum' started by Catseye, May 29, 2009.

  1. Catseye

    Catseye Member

    Here's a recent profile pic. Is this a bad hair day or is it supposed to look like this? Does it matter??? God, it's fun to dress up and put goop in my hair and drape jewelry all over myself again. When I go out now, I'm dressed to kill. I have to make up for all the times people saw me as a disheveled train wreck.

    For newbies, I pretty much fixed the causes of the problem: gut dysbiosis and intestinal hyperpermeability. I used diet and supplements under the advice of Dr. Farr, a chiropractor who studied these methods in college. I did specific tests to show what was happening in the guts (main problem area for CFS) and used diet adjustments and supplements to correct what was wrong. It took a very long time, like a year, but it paid off. I'm almost totally back to normal. A few years ago, I was completely bedridden and needed people to bring me food and water and take me to the bathroom. I would have starved to death in my bed if I had been alone. And, needless to say, I didn't look anything like my present profile pic.

    I've been going to yoga classes 3 times a week and working out at the local gym. I only do 5 and 10 pounds of weights at the gym, I'm not crazy enough to push it every time. Though one day I tried this torso twist thing at only 5 pounds and it ruined me! The next morning, I had to hang around the house while I recovered. I tried doing the gym and yoga on the same days a few times and regretted it a couple of times. But compared to what I could do even a few months ago, it's not something I'm fretting over. I can already do things in yoga that I couldn't do when I started about a month ago or so. Like the "grab each big toe with my thumb and finger and lift and straighten my legs outwards and balance myself up on my butt" thing. I forget what it's called!

    My instructor is a real hunk, he looks like a model and he's also a lot of fun. He's new in town so I took him shopping to the big city. We ended up parking the car and getting around on the back of a motorcycle to save time. He's amazed I know so much about supplements. He showed me all his bottles in his apt and I went down the line describing each one and what it does. He also showed me a nice set of yoga exercises that I can do on my own that completely work the body. It's called the 5 Tibetans. So I do those on the days I don't have yoga class.

    Spanish class is going well. My brain works enough to study and remember things. It's not perfect yet, but taking class was not possible a few months ago, either, like the gym.

    I had another CDSA done. Some things are okay, but I've still got liver troubles more than anything else. My phase II pathway is especially troubled. I'll be starting on a couple of supplements to help this next week. Beta glucuronidase went way up and this is an indication that toxins, hormones and drugs are being recirculated and reabsorbed. The estrogen is not breaking down which is why my monthly cramping is incredibly bad. It's so bad, I have to give myself injections of an anti-inflammatory for the pain. Then this drug has to be detoxed by the liver which brings me down a bit on those days. I can still do yoga or whatever, but I get tired faster. At least I don't get exhausted anymore. I tried ProgonB for the painful cramping, it's progesterone. But the improper breakdown of the estrogen by my liver is preventing it from working. So I'm going to try some Jamaican Dogwood. My yoga instructor's friend had luck with this with her cramping and Farr said it looked like a good thing to try.

    I also had another metals test. Some went down, some went up, like mercury. Probably too much fish and shellfish. I started eating those again but I'm stopping immediately. Dr. Farr said we won't do anything about them right now but I think the ionized water I'm drinking will help with these.

    My last blood test from January showed acidosis based on the levels of chloride and CO2. But the ionized alkaline water I've been drinking for the past 3 weeks should take care of that, too. On the CDSA, my ph went down which is an indicator of malabsorption and carbohydrate maldigestion. And the high triglycerides means bile insufficiency, reduced pancreatic function and low hydrochloric acid. That's why I continue to take so many digestive aids.

    I've been sticking with the low carb diet, mostly. But I have to have some more carbs when I work out. I've been getting snacks, crackers and granola from naturalzing and drinking tea with honey. I feel so good it's hard to believe where I was not all that long ago - lying in bed dying, or at least feeling like it. It's really like being out of prison, out of a really sick body. Now I just have a deconditioned one. I bought tons of clothes recently and have been active socially. It sure is nice to be able to go out again and do what I want when I want. And people are so surprised to see me!

    I see from a post here that some doctors are getting wise to the fact that gut problems are behind a whole slew of things, including CFS. Well . . . DUH!!! It's been known for a long time to people besides medical doctors so that just tells me not to go to medical doctors for treatment. They are way behind in health knowledge because they can only use drugs as treatments. And since the liver detox pathways are heavily involved with CFS, drugs will hurt more than they will help. Modern medicine is a sales business. It is NOT health care. If you confuse the two you won't understand why doctors can't help you and you will continue to waste time reading about "breakthroughs" when the treatments that can help you are already out there. If you don't know about them yet, then you need to do more homework and make sure you don't limit your research to "medicine". If you do, you'll be on here forever.

    beatcfsandfms.org has the protocols we need to fix ourselves. They may be weird or unorthodox or not to your liking, but just how long are you willing to sit around and wait on medical doctors? I promise they will not cure these diseases in our lifetimes because there is too much money at stake. There is a difference between patentable treatments (drugs) and unpatentable treatments (diet and supplements). The biggest difference we care about is that drugs don't fix our diseases but diet and supplements do. There are actual health care professionals who can fix us, like Dr. Farr. beatcfsandfms.org lists some doctors who have experience in the treatments necessary to fix us. Farr's method is very simple - you treat the root cause and fix the body, you don't go after individual symptoms like medical doctors do. We have an absurdly long list of symptoms, are you really going to let them take a whack at trying to alleviate each one with a drug? Because that's all they do - alleviate symptoms with drugs. They have no idea what is the root cause of anything.

    Some of them are awakening to the gut thing, but they still have no way to treat it. Sure, they can give you diflucan and tell you to eat Yoplait, but that won't work. You can take lots of diflucan but if you continue to eat carbs and sugars, it won't work. Yoplait and other store yogurts have too much sugar in them and besides, you need a wide spectrum of probiotics, not just acidophilus.

    The problem with symptom relief and not going after the root causes is that organ damage will set in the longer you allow the body to remain "broken". It has taken a lot of effort for me to climb out of this CFS hole, but it happened. I studied harder to fix this than I ever did in college. And it paid off, I won! I feel really great! The only way I can tell that I still have some issues is if I try to take some pain meds or if I exercise. Any meds make me feel weird and I can't exercise as much as I'd like to yet. The CDSA tells me what is going on and what to do about it.

    Anyone interested should check out my post on the ionized water thread. I've been drinking this stuff for 3 weeks now and I won't live without it. It's even better than Harry's oxygenated water that I've been drinking for a couple of years. And keep in mind that there is a big difference between bottled alkaline water and electrolyzed reduced water. The machines are expensive but they're worth it.

    I've seen a lot of people talking about their problems with food. Food intolerances and allergies are indications of intestinal hyperpermeability and dysbiosis, classic CFS problems. They are treatable by the right person, but don't go running to your regular doctor - he won't have a clue about what you're saying.

    good luck!

    do your homework and don't give up!

  2. Catseye

    Catseye Member

    There is a problem right now with the site and it won't let me put in my new pic, I'll keep trying.

  3. Catseye

    Catseye Member

    You mentioned milk and I can't remember from your other posts - have you given up wheat and dairy?

    And speaking of leaky plastic containers, I just paid a local water lab to test a bunch of water for me. I'm having the tap water tested, the big 5 gallon jugs of water everybody drinks because we don't drink the tap water (which turns brown in heavy rains, BTW, which makes me too squeamish to wash my hair!), the ionized water machine's water which is hooked up to the tap water (it also has a purifier in it) and the anespa shower attachment ionizer water. I can't wait to get the results, this should be interesting.

    It's weird having to worry about metals, but they are definitely a problem that has to be dealt with. Didn't know that about the steel and crystal, very interesting. I'm not eating any tuna, in fact, I'm not eating any fish now because I can't get the "safe" fish. My cats love the canned tuna and it's cheaper than the cat food!

    Here's the safe fish, according to Farr, just FYI for everyone: flounder, Pacific salmon, sardines, croaker, and tilapia. I've never heard of croaker before yesterday. Do you know what that is? Is it any good?
  4. Catseye

    Catseye Member

    Just beginning, just starting out with sun salutations and lots of downward facing dogs. Some balancing, I can't remember what it's called, I can ask. I have some books on yoga, I'm especially interested in kundalini yoga. The 5 Tibetans are here if you want to see:

    http://www.lifeevents.org/5-tibetans-energy-rejuvenation-exercises.htm
  5. sascha

    sascha Member


    hello-great to see your post. congratulations on your work and fantastic progress. you write with such animation- you must be like that in person.

    i couldn't keep on with the approach you're doing as i wrote you some time ago, but i'm doing better nonetheless. it has been almost a year since i stopped the anti-viral treatment with valcyte. my virus counts came way down, and i started slowly experiencing improvements. i shouldn't have taken on any other approach to treatment for at least a year following the course of valcyte.

    i'm helping out with new twin grandchildren, and my strength, stamina, and sense of well-being slowly continue to improve. it's not constant forward progress, but there are definite gains. i'm interested still in genetic testing- what did you find out from having this done?? i never found out from you.

    keep it up! what cheering news. best, sascha *your photo looks great
  6. Catseye

    Catseye Member

    Sorry, I forgot to pass it on! I had the liver genomic profile done and it showed some genetic problems with certain enzymes so we compensated with some supplements and WHAMO! Had success within a couple of weeks. My liver's methylation cycle came back into working order and I had a surge of energy. It was just extra manganese, NAC and some methyl donors that I took. My liver still has some issues but we seem to be able to manipulate it with the correct supplements so that's what we're doing. I'll be starting on some new stuff in another week or so.
  7. m1she11e

    m1she11e New Member

    Hi,

    I am glad you are still feeling so well!! Every time I read your posts I go to Dr. Farr's site and I try to figure out if I want to go in that direction. There is nothing about what he does that is new or foreign to me and it makes all the sense in the world. That is the direction I have gone for the past 20 years, before I had insurance. It wasnt with all the tests you have had ongoing and some one guiding all along the way though. I just researched and took supplements and ate healthy, and occasionally went to a willing doc and asked to have a test run. What I see with your program is it is all very methodical with the testing and supplementation, etc. Not new news for me, just a better way of approaching it.

    I know you have posted before, and I have gone back to read and try to answer my own questions but I am feeling awful and my vision is being weird. So, could you answer a couple of redundant questions?

    Did you have any of the virus' that so many CFS people seem to have? (HHV6, EBV, etc.)
    Were you ever tested for Lymes? If so, were they addressed directly by Dr. Farr at any point or was "balancing" you system and healing your gut etc. what allowed your body to deal with the pathogens?

    Also, are there others that had the success with Dr. Farr that you did? I noticed that there was a time several were starting with him but never reported back. Maybe they were not able to hang in there like you were? Do you know of others with such great results?

    Im at a point where I could rob Peter one LAST time and I am trying to figure out which direction to head. I have an HHV6 diagnosis but dont feel great at all about the anti virals out there. I have a few positive bands on an IGENEX test and my Lymes doc would happily put me on all the antibiotics again (although 6 months before did nothing. Not even a "Herx.") I am having EVERY MS symptom these days and am housebound for the first time in 27 years of being sick. I have to do SOMETHING quick as I feel like ever since I tried the anti virals (only a few months) I have fallen and cannot get up!!!

    Thanks for coming back to post!

    Michelle
  8. Catseye

    Catseye Member

    I did what you did for a long time, ate healthy and took supplements on my own. I came a long way, but not enough. It was the intestinal issues that I couldn't handle on my own. I didn't know about CDSAs. And even if I could have gotten the test done, I wouldn't have known how to interpret it properly. The diet was half of it, but the supplements I took on the way to replace stuff I needed immediately were the other half. I couldn't have done it myself unless I had went to school and studied it all like Dr. Farr did. I didn't really know there were people like him out there until I went looking for help. All I knew is I couldn't use a medical doctor.

    Have you ever had a Comprehensive Digestive Stool Analysis test done? Some people call it a "non-standard" test, but the people who call it that are still sick from standard testing so I don't quite understand the point they're trying to make. They just haven't done their homework and they probably spend too much time reading the stuff on quackwatch which is an idiot's guide on how to stay sick forever.

    I had hep c and Epstein Barr, I was tested for those. If I had to guess, I'm sure I'm full of mycoplasma, SV40 (the dreaded monkey virus!), all the herpes viruses (well, those include Epstein Barr), and I forget the rest. I just haven't thought of them in a long time. I also have lyme, which I have totally forgotten about. I haven't even thought of lyme in months. It's like I don't have it! Maybe I don't, I supposed I could get another test but it's pointless. We have treated the immune system and it is coming back around and doing what it's supposed to.

    For the lyme, we just went to work on the immune system. He had given me a supplement designed for viruses, but I couldn't take it because it worsened my liver symptoms. So we just worked around it and my lyme count went way down. What he does is not really going after any one particular thing like lyme, he looks at what's wrong with the body and that's what we fix.

    The guts/immune system were bad, so that's what we fixed first. Besides the carb restricted diet, I took yeast killing herbs and oil of oregano to kill pathogens. And probiotics every day to help replenish the "good guys". It took over a year for my CDSA to finally show growth of lactobacillus. This poor beneficial bacteria is needed to help digest dairy, among other things - hence the term "lacto" in its name. The messed up gut messed up the liver and so we're fixing that now. We got the methylation cycle back "on" and that freed up a lot of blocked functioning in the body. Now I've still got some issues with the phase II pathway, so we're working on that. It's been taking a long time, but I can see on paper what we're doing and why and I can follow my own progress by test results. And, of course, I can feel it, too! Even my face looks different. I'm going to come out of this healthier than when I went in and I'll be able to keep myself in perfect health since I know so much about health and nutrition now.

    I haven't spoke with the others in awhile, I've been "out and about". I'll try to check up on everybody. But it does take awhile, the guts are hard to fix because they are in use constantly and the bacteria and yeast can be hard to deal with. I remember that we all had different diets to follow. That means we have to have individually tailored treatment plans. It's not easy, Dr. Farr has had lots of experience with people who are in bad shape. He said by the time people end up using him, they are on literally on their last legs. I haven't heard of anyone else's dramatic improvment yet, but it probably hasn't been long enough. Plus I assisted in the work myself. I was able to help a lot with the how and why of what was happening because I had studied so hard. I manipulated dosages so I could continue taking things when I had adverse effects, experimented with diet, etc. So I may have speeded things up for myself.

    I think the antivirals are bad for CFS because aside from head trauma or specific gland problems like with the adrenals, CFS is most likely a guts/immune system issue and that means the liver is messed up, too. And any drugs will have to be detoxed by an already overwhelmed liver and if the immune system isn't fixed, killing off all the viruses isn't going to do anything. When you finally stop the antivirals, you are still messed up gut-wise and liver-wise and any opportunistic pathogen is going to be able to flourish again. So you have wasted time, money, continued to stress your liver and immune system and made yourself worse because the longer you remain "broken", the more organ damage you are going to have.

    You have to have your immune system working if you expect to be healthy. And medical doctors do not fix immune systems. They don't have the training or the proper tools available. If you have an immune system issue and you go to a medical doctor expecting help, you are doomed. They will string you along and make you worse while taking your money. He may be the nicest guy in the world, and really care about you, it may even be a relative . . . but what a doctor does is what he/she learned in school. And the medical profession is in the business of making money with drugs, tests and surgery. They are NOT in the business of fixing what's wrong so they don't have to see you regularly.

    This use of antivirals is just typical "medicine" - more symptom relief. We have been so used to how they do things, we have never questioned it. Think about it, instead of fixing our immune system, which can kill anything that comes along, they try to kill a specific virus. Where's the sense in that? It's in maximizing profits, that's all. It is a "drug selling" business, not actual "health care". I will only see a medical doctor again if I have some sort of physical trauma like a car accident or a heart attack. For these things, they are indispensable. For chronic diseases, they are a rip-off and guaranteed to make you worse in the long run. Even things like arthritis - people need to figure out why they have arthritis instead of just taking pain meds which will hurt the liver and guts/immune system after prolonged use.

    Yes, I'm sure your lyme doc would love to put you an antibiotics again for long periods. It means more prescriptions and more follow up visits. If he were to fix your immune system, he may not see you again. I wouldn't go with abx or antivirals, they'll just take your money and you'll end up right back where you started.
  9. m1she11e

    m1she11e New Member

    Once again, I appreciate your very thoughtful response.

    My Lyme doctor actually is an internal medicine doctor that specializes in alternative things. He wont go near anti virals but he does use antibiotics for Lyme. He is one of the good ones. Im just not seeing along of Lyme people getting well on oral antibiotics alone. He actuallly is into IV ozone and all that sort of thing too but that gets to be ridiculously expensive.

    I went back to Dr. Farr's site. I have a hard time understanding the free phone consultation as it directs you to a questionare and it doesnt turn out to really be a free phone consultation at all. Unless I am doing something wrong? I will call the regular number on Monday to see if they really offer a free half hour phone consult or not.

    Am I right to assume that initial consultation and testing is going to be a couple thousand dollars right from the get go?

    Just trying to figure out which way to go. I wish funds were unlimited. Even then, nothing is guaranteed I suppose.

    Again Thank You~~~
    Michelle
  10. nink

    nink New Member

    Which chiro named Dr. Farr are you consulting with, Catseye? Does he have a website? Sorry if this has been asked and answered; I'm not up to reading this whole post this morning.

    Congrats to you! It took a lot of determination to make all the changes you have had to make to get well.
  11. Catseye

    Catseye Member

    I guess abx for lyme may work if you don't have a messed up immune system and you take plenty of probiotics to guard against dysbiosis. But if you already have dysbiosis, intestinsal hyperpermeability and a dysfunctional liver, they will hit you very hard. You still have a messed up immune system to fix.

    The phone consult is free. I filled out a small questionnaire the first time and then got a free phone call about the results. I could tell from talking to him for a few minutes that he knew what to do. It was the intial tests and supplements that could cost a lot, depending on what you need.

    The first questionnaire was pretty small, I complete it in just a few minutes or less, can't remember. But then, if you decide to use him, after telling him what your problems are, he sets up other very detailed, lengthy questionnaires for you to fill out. This was a couple hundred questions and took me 2 days to complete. Then he orders tests based on your symptoms. For example, in my case he ordered the CDSA and complete bloodwork. Then the results of those determined what diet and supplements I would need. It's very methodical - to use your word, that's a very apt way of describing it - there is no guessing or general recommendations involved. What you need is going to determine how much you will pay. You'll probably need a few hundred dollars for the beginning tests and anywhere from a couple hundred to several hundred dollars for the supps you need. Or maybe less, it's hard to tell.

    But the beginning questionnaire and talking to him is free. That's why I went that far, I was trying to find somebody that could do it for sure and not just waste my time. I knew I had serious gut problems and needed them fixed. That's something I realized I couldn't do by myself. And when I spoke with him, it was mostly me asking questions. Like about intestinal hyperpermeability and how he would treat it, liver problems and how we would treat that, and I was satisfied with all his answers.

    It was obvious he already knew what I knew and much, much more. Plus he has had tons of experience with people who are seriously messed up. He gets really tough cases. And he has protocols that dictate what to do based on all the test results. It just gets me madder at the medical profession because the knowledge of how to fix us is all there, it's just not implemented by them because of their system of maximizing profits. Drug companies are in charge of doctors and they don't use supplements because they can't patent them and therefore get them approved by the FDA and still make a profit. It's that simple, really. But I guess you already know that.

    If you need what I needed, then it can get expensive over time because of the supplements. He uses a pharmaceutical grade brand, Biotics Research. They are very good, but very expensive. I may have been able to speed up healing if I had not eaten my dehydrated veggies, though. I've come to find out that bell peppers are really fruits and even though they are low carb, they are part of the nightshade family and are just not good for digestion when they are raw. If you stick to the diet exactly and drink water only (ionized if you can get it) then it should go much faster. Do not cheat at all, it can be quite costly.
  12. Catseye

    Catseye Member

    that's great you can do that! I couldn't do it my first class, I kept falling over and couldn't straighten my legs. But by now I've loosened up quite a bit. I'm really enjoying exercise, this illness cured me of not liking it. Now I not only like it, I feel distressed if I miss a day! Now that it's over with, I can look back on this horrible illness, with its torture that was as black as midnight, and say it was the best thing that ever happened to me. It cured me of every bad habit I've ever had, made me like healthy food, and soon I'll be healthier than I've ever been. I've also come out of it looking and feeling better than I ever did before.

    I still have some liver issues so I'm not perfect, but everything is still improving. But I never thought I'd be able to say CFS was the best thing that ever happened to me. It still sucked royally, I'm not glad it happened, but how I am now is making it all worth it. Would I do it again? No, I'd probably end it all if I knew I had to do a few years of torture again, but now I can save people lots of searching and homework since I went through it. I like the person I am now better than the person I was before I got sick I guess is what I really mean.

    The MSM is a methyl donor and it's supposed to do wonders for people. Hey, maybe you could do the 5 Tibetans, too!
  13. Catseye

    Catseye Member

    Farr is at becomehealthynow. I found him when I sought out someone to help me with what I finally realized to be gut problems. I had severe dysbiosis and intestinal hyperpermeability. Check out beatcfsandfms.org for more info on our diseases. They are right on about CFS, probably right on about fibro, too.

    good luck
  14. nink

    nink New Member

    TY, for the URL and for all the good info.
  15. gapsych

    gapsych New Member


    Is Dr. Gary Farr related to the infamous Dr. Charles Farr?

    Thanks.

    gap
  16. Catseye

    Catseye Member

  17. Catseye

    Catseye Member

  18. Chootik

    Chootik New Member

    Not sure if you'll see this, but I'm finally starting to work with Dr. Farr! I did all the tests he wanted me to do (took a while) and he is suppose to tell me his recommendations in a week! Can't wait!

    I just hope I can do all that he is going to want me to do working full time and all. Either way, I'm soo looking forward to fixing my gut, I'm at bare minimums for Proteins, did the Urine Amino Acid Test and it was really bad! I'm looking forward to getting some more energy, gain some weight (maybe), less Brain fog! and just feel better.

    If you see this send me a reply, would love to know what you're on now.

    By the way, I told him about you and he said you're one of the most successfull cases he's had! Good for you girl!

    Hugs
    Chootik
  19. LindaJones

    LindaJones New Member

    It is good to hear about people who had cfs and are now doing better.
    Many people feel that there is not treatment for cfs.
  20. astroherb

    astroherb New Member

    It was really good reading Catseye's posts again. I have been doing a protocol put together by Dr. Farr. I am just going into the fourth week of taking supplements and have really started to see improvement this past week. I had to work extra hours at my job and also had extra things going on in my personal life. I made it through quite well. Several months ago I would have had a sore throat, extreme exhaustion and pain. I am very hopeful!

    The tests he ordered showed that I had extreme adrenal exhaustion, high gluten intolerance (probably celiac), maladsorption, and my body wasn't removing toxins properly. The supplements are very expensive, but worth it if they continue to give good results.
    It took a leap of faith to commit to the program, but I am becoming more and more sold on its value.

    I would enjoy hearing from others who he is treating.