toxic guts, toxic body, why do a comprehensive stool analysis

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by Catseye, Mar 21, 2008.

  1. Catseye

    Catseye New Member

    I've been so busy lately, I haven't updated the latest tests!

    I had an hpa axis test done which showed high cortisol. A year ago, it was really low, so all my adrenal supps took care of the adrenal burnout, at least. Not that high is good, it's just better than really low. But it means they're working again! So I've got some supps specifically to target the hpa axis to try to normalize it even further. I also had a few neurotransmitters out of balance.

    And I think my hormones really ARE normalizing. My last 2 monthly cycles didn't have near the pain that those of the last 20 years have had. That's a real relief!

    My thyroid is okay, too, so I've since been able to stop the hydrocortisone and armour thyroid. See, get the guts and digestion working and everything else starts to fall into place!

    My only bad symptoms still are some memory problems and the nighttime dehdyration and low blood volume. But we've been narrowing it down and it seems to be a kidney problem, having to do with some other hormones. I'm thinking it's the renin-angiotensin-aldosterone axis. The renin precursors are prostaglandins and are hindered by things like NSAIDs, which I'm desperately trying to avoid.

    Also, renal prostglandins are sythesized from aracidonic acid. Carnitine, which I had been taking but don't need anymore, inhibits arachidonic acid and so does cortisol. So we're going to do some more tests in the next couple of weeks and determine what supplements will best address this problem. Probably will be kidney oriented.

    I started to ride my bike everyday and was pleasantly surprised to find myself not getting tired, just getting rubbery legs, but with the high cortisol, it's better if I don't exercise for awhile until it goes down. It can cause problems of its own, so I'm back to stretching types of exercises and yoga until I have another hpa axis test.

    I was high in heavy metals (particularly mercury, lead and copper) and started some chelation but the plant supplement which was the most important seemed to have a diuretic effect on me and increased the urination and low blood volume at night so I had to stop. I'll resume it after we've tackled the kidney problem. We were just using some minerals and some cultured veggie supplements for the metals, and it didn't even cause a bad reaction, except for the kidney thing. I mean I didn't feel bad at all.

    I am so not the person I was back in March when I started this new treatment program. Dr. Farr is definitely qualified in treating this illness and I would urge anybody who can afford it to take him on as a doctor. He works with you to figure out what tests you need to show exactly what your body needs and then he puts you on those supplements.

    I don't feel bad anymore, or crash, or have PEM or have a problem climbing stairs or standing up for at least 30 minutes at a time - I did that at the bank the other day and it didn't bother me in the least. And I can drive sitting straight up instead of having to recline and that goes for all the time, I used to recline constantly to conserve energy but now I no longer have a problem holding my head up. I probably have a few more months to go before I can say I'm cured, but this is really working, it's just slow.

    The lyme protocol part of the treatment is just really working on the immune system and I know it's working better because in the past few years, I'd develop cold sores quite easily from eating nuts. That's because nuts are high in arginine and this amino acid encourages herpes viral replication. The amino acid lysine inhibits viral replication, so I would have to take lysine every time I ate nuts or I'd break out. I forgot often because of the brain fog and had sores every once in awhile. But for the past few months, I keep forgetting to take my lysine when I eat nuts most of the time, but I've suffered absolutely no break outs.

    You have nothing to lose trying Dr. Farr's approach except maybe some money in the off chance he can't help you, but I bet he can. And you're going to be blowing money with your regular doctor anyway. If you're going to spend money on your health, make it with a health care expert and not just a drug salesman who hasn't a clue how to treat the underlying causes of this disease. It sure can't hurt to do your free quiz and get your phone consultation and talk to him. It was the best thing I've done for myself.

    I'm sure there are other doctors like him who can treat this, they are just hard to find because they aren't medical doctors and they really aren't allowed by law to advertise that they can treat this because of the supplements used - supplements are not approved by the FDA to treat any diseases because nobody can foot the bill to get them approved.

    I'm still on the low carb diet but I've figured out satisfying ways to keep on it so it's not much of an inconvenience. I'd really like some fruit, but he said not until I pass a couple of tests! Apparently, for me, not ingesting ANY form of sugar is extremely important. I can't argue with that, I can do what I want during the day now. And I feel great all the time. We've all been jerked around by the so-called health care industry. Don't waste any more time and money on it, you deserve better and have suffered enough. And quit trying a couple of things here and there. Get with an expert and get it all done at once. There are actual tests that can help us, but regular doctors aren't familiar with them.

    good luck

    karen
  2. Catseye

    Catseye New Member

    I should mention that this nighttime problem is really hardly a problem when I avoid all diuretics: caffeine, alcohol, any supplement with plants with diuretic properties. Some diuretics set me off, like coconut water, and I have the problem for several nights until it wears off. This tells me my kidneys are hypersensitive to any diuretic effect and it's something that needs to be dealt with. I need some of the supplements to complete treatment and I would like to have a glass of wine again!
  3. SkeptikSharon

    SkeptikSharon New Member

    Hi Karen,

    Thanks for the info and for telling me where to look for this. I'm pretty certain that I am currently in a state of malabsorption/malnutrition, due to the length of time I've been having these issues and because my caloric intake remains low. It sounds like this Dr. Farr is really good with this stuff, and it has a lot of benefits. My only concern is about the cost of the testing and stuff. The base test is $305 per the website, and I don't think I can afford that anytime soon, so I'm not sure what to do. Can my regular doctors order something comprehensive like that, that would be covered by my insurance? I'm currently surviving on state disability, but its very low, and is scheduled to run out the beginning of November. Since my copays for doctors are only $20, I can swing those, but anything not covered doesn't seem to be an option at the moment.

    I also have hypoglycemic tendencies, which I have had for a long time. A few years ago, I tried to research and institute a hypoglycemic diet, but I've never been able to stick with it. And right now, I'm having difficulties with most foods, with fruits being the easiest to actually eat and swallow. All foods hurt past the point of swallowing though. I have difficulty eliminating all grains. Is even Quinoa bad? I need to start eating more veggies, and do mostly stick with chicken and fish. Other than that, I tend to eat things like fruit smoothies with soy protein and added fiber, bagels with cream cheese, other protein type drinks from the store, and cashews. Some cereal and milk.

    There's so much involved in all this to consider and I feel like my brain is going to explode out of my head with all the info.

    The cost of everything is one of the big issues for me with my reduced income and same level of bills. My poor husband bears the brunt of most of it. With cost in mind, do you think it would be acceptable to start with just taking the Betaine hcl? I'm more FM than CFS, so I'm not sure if all the same info applies to that side of things.

    I really hate that it costs so much to see the good doctors and to have the right testing done and to take the right supplements. I feel like I cannot financially afford to get better, but if I don't get better, how can I ever afford anything? Catch-22 I guess...

  4. Catseye

    Catseye New Member

    I don't know what insurance covers since I never had any. I know the test requisition forms Dr. Farr has given me have been filled out for insurance purposes so he would do his part. The problem with a regular doctor getting the tests would be that he wouldn't be able to interpret them properly. Maybe you could get the tests and results from your regular doc, if insurance would pay, and then you could consult with Farr and have him interpret the results for you. His fee is about $98 an hour, or so, can't remember. But then, he's going to want to send you the supplements he uses.

    You could always fill out the brief quiz and get your phone consult and talk to him about it and see what he thinks he could do to help.

    Or, you could get the tests and results and learn to interpret them yourself - you'll just have to research everything carefully. Anything is better than doing nothing.

    You may be hypoglycemic for the same reason I was: eating too many carbs. I also ate a lot of fruit and carbs. Even though I had eliminated the wheat and dairy long ago, the carbs were messing up my blood sugar balance.

    I would cut out all wheat, dairy, soy and fruit and eat more veggies. Did you see my veggie recipe at wolverine's thread? You're probably having problems with food because of wheat and dairy, too. They are what cause most of the allergy problems because the proteins are too hard to break down and they stimulate the immune system. There's really no way around it, you have to give up everything you've always liked to eat. Try to stick to raw nuts instead of roasted.

    I'm sure you enjoy your bagels and cream cheese, but your body is paying a heavy price for the 5 minutes of enjoyment your mouth and tummy are experiencing. You can't be a lightweight with food, you have to stop putting allergens in your body while digestion is messed up and the liver is congested. Maybe one day you can go back to them, but for now they have to go. Probably for several months, at least.
    I used to eat cereal and milk all the time, more than once a day. And I ate my favorite cereals dry, right out of the box - Product 19 and Cheerios were my snacks for years.

    These foods are not digestible when digestion is messed up. Even worse, they can do actual harm to your intestinal lining and immune system. I'll bet the dairy, mostly, is why you have the trouble swallowing. It makes you hypersensitive to other allergens and foods. And it takes a long time to get it out of your system. You can't just do all these diet changes, not notice much difference in a few days, and quit and go back to your old foods. It takes a long time to change digestion and the guts.

    You don't want to go buy too many gluten free products, though, because usually that just means other grains and they are high carb and cause inflammation.

    The first things he put me one were enzymes for inflammation and digestion, zinc, and betaine hcl. That would be a good start. The enzymes I take have digestive enzymes like pancrelipase, papain, cellulose, lipase and amylase. Also, I use some bromelain pills.

    Try to stick to chicken, beef, fish, eggs, veggies and raw nuts and seeds and see if you can get over the hypoglycemia. It took me a couple of weeks of transitioning, I had to have some juice nearby, but after that, it kept getting better and better and now I can go 7 hours or so without food. Dr. Farr gave me a special multivitamin for in between meals specifically to combat the hypoglycemia. It all worked. The carbs I was eating were perpetuating the hypoglycemia. It's all gone now.

    And yes, your brain WILL explode with everything you have to read and study, but that's because you are really on your own. You've already seen that doctors don't treat this so you have to do your own research and listen to your own body. You will get much more effective diet and supplement recommendations for yourself if you just google for your symptoms and put "natural remedies" in with every search. The medical stuff is not helping us, that's only good for crisis management like when you break an arm or have a heart attack. In the case of chronic diseases that are treatable with supplements and diet, medicine is completely useless. We are deficient in many nutrients because of digestion not working, and then we get deficient in all the body's metabolites that it produces. Digestion has to be fixed, and that includes the guts and liver.

    Fibro and CFS both have gut problems in common. This means the digestive system AND the immune system since the heart of the immune system is in the guts.

    If you start the betaine hcl, start with one or two 700 mg pills with a meal of fats and proteins. For example, if you are having a big plate of chicken and veggies, I would start with one or two. Then, every other day, increase by one until you feel discomfort or burning and then cut back. I was up to four pills with larger meals. Now, after 6 months, my body is finally starting to make its own acid and I'm back to only two with meals. If you eat raw nuts as a snack, just take one. Nuts are full of fat and protein and you need to break them down with acid, too.

    That's also why almond or nut milks are good substitutes for cow's milk - nuts are full of fat and protein just like milk and so they are just as satisfying. But don't go nuts with nut milks and gluten free cereal, it won't hurt you allergy-wise, but it will be high carb with the grains and/or fruit from the cereal. It's also very good, though, and one day when you're over this, that's what you should eat when you eat cereal instead of the old wheat cereals with cow's milk.

    And you saw on wolverine's thread what I said about zinc, right? So you want to take zinc with the betaine hcl with every meal so eventually, you'll start making your own acid again.

    I could tell you more, but your head would spin! You have to have time to "digest" all of this little by little.

    good luck

    karen

  5. Catseye

    Catseye New Member

    forgot to add

    I was really skinny, too, for a long time because I couldn't really eat. Once the betaine hcl and enzymes start helping you digest your food, you should start gaining weight. Otherwise, it's like the food is just going right through you without being properly utilized. My appetite turned into a raging tiger within a month or two of this diet and I was eating huge meals for a while. I could really tell when digestion picked back up. By now, 6 months into the treatment plan, I'm back to eating small portions and having to watch my weight! I was 105 at 5'3", but now I'm probably close to 110 already.
  6. SkeptikSharon

    SkeptikSharon New Member

    Karen,

    Okay, I’ll look into that. See if I can get the tests ordered through my regular docs, maybe do the free consult first with Dr. Farr. His fee of $98 an hour is a lot more affordable than the $300 for the tests, so I might be able to swing that.

    I know I need to give more attention to my diet, especially at this point, I just feel so overwhelmed when I think about cutting out all the foods that I like the most. I have been trying to eat more veggies, although haven’t done so great the last couple weeks. I did see your veggie recipe and will have to try that. It was the one cooked in chicken broth or something, right? With no MSG? The only problem I have with that is that I have not yet found a store bought chicken broth that I can tolerate the taste of. Maybe its just chicken broth in general. I’m not sure.

    Part of the problem is that when I am feeling those hypoglycemic symptoms – the shakiness, dizziness, headache, etc. – I tend to reach for whatever is the easiest to grab, which tends to be carbs, a glass of milk, or one of the soy protein drinks. I’ve also heard that the soy can mess up your hormones, and I know mine are already messed up. So that’s probably bad. I’ve often wondered about allergies to wheat, dairy, and food items, but never really paid that much attention to cutting them out.

    I guess my current feeling with food is that I’m pretty sure I’m in a malabsorptive and malnutrition state right now, so my body’s probably not even taking in the vitamins and other stuff it needs from the foods I eat. But I know that I need to at least try to fix the foods I eat, fix my digestion, and get out of this state before I get worse. I’ve always had difficulty sticking with diet changes, probably a lot because I am very impatient (and I know I can’t be impatient with things like this, because it took me a long time to get to where I am at now and it will take me a long time to get better). I never thought about the dairy making it difficult for me to swallow.

    I am going to try to make more of an effort to stick with the things you mentioned. By the way, is pork bad? And are there spices and sauces that I should also avoid? Do I need to cut out fruit and juice completely or just severely limit them? That is great that you can now go 7 hours or so without food! I would love to get to that point. It would be nice to at least not wake up with my stomach screaming at me. =)

    Where do I get the betaine hcl? Is that something I have to order or something that they sell at like GNC or some other health food store? Do you have a recommendation as to how much Zinc should be taken? The only supplements I’m currently taking are a multivitamin and a magnesium pill that I take for the constipation. I do have other supplements that I’ve bought, like Coq10 (I think the one I bought is too high a dose though and I didn’t research it before I bought it, stupid me) and the omega 3 pills or whatever they are.

    It would be really fantastic if I could gain some weight! I think this low weight is making my heart problems worse, as well as the fatigue and everything else. I’m pretty sure the food is just going right through me, as well as the multivitamin I take. I want my weight back! I want my figure back! I hate being this skinny.
  7. Catseye

    Catseye New Member

    I would try a health food store for non-msg chicken broth, or there is a real tasty one that is in grocery stores called Better Than Bouillon. It doesn't contain msg, but it's a little more expensive, like $5 a jar or so. It comes in a paste form that you have to refrigerate after opening. You just scoop out how much you need from the jar. I love it, I use it in almost everything, soups, veggies, etc.

    For hypoglycemia that's immediate, try just juice instead of carbs or milk. You don't need much, just a few sips. Yes, the soy will mess up the thyroid hormones. The allergies to wheat and dairy are mostly because of the state of the gut. Once it gets in a state of dysbiosis and has a damaged lining, then these things affect it. I had been eating them all my life, but now I can't without them really messing me up.

    I think by the time I'm able to eat them again, I probably won't anyway. Mostly because I don't want to take the chance of this happening to me again, but also because the foods that contain wheat and dairy are just not very healthy. And not only that, most of them are highly addicting and you will go crazy with temptation trying to make sure you don't overdo them and gain weight or get sick again or whatever. You can google for wheat and dairy in your spare time and read the horrors of eating them. They are yummy foods, nothing more. You may want to start looking at raw food websites. You wouldn't believe the stuff you can concoct with raw foods. Things like cashew cheesecake. Dairy is full of fat and protein, that's why it's so satisfying, especially with sugar, like with cereal.

    But if you start substituting nut dishes, you can have the same mouth watering, tummy satisfaction but it will be healthy. It's a whole new way of preparing food. I have a dehydrator which I use everyday making dried veggie chips. I use a nut batter and they are better than Lay's potato chips. You can't eat just one, but it doesn't matter! They won't get you fat and you can eat them all day long, literally! With no guilt!

    If you can learn raw food preparation, it's much easier to stay off the bad foods. In fact, it's easy because this stuff is good and you won't miss the crap. Just mute the tv commercials, those DQ ones will drive you nuts! Stuff like the cashew cheesecake and raw chocolate pies and such are high carb, so you don't want to dive into the desserts and treats just yet, but stick to things like veggies and crackers made of sunflower seeds, flax seeds and veggies. I make my own after I ordered some from the rawguru. Once I saw the consistency and the ingredients, it didn't take much experimenting to make them myself.

    I like sunflower bread (which is crunchy like a cracker) with cashew nut butter on it. It's very good and filling. You are only overwhelmed with the food thing because you don't know the other fantastic things out there that are available yet. It took me a loooong time to find all this out, I went through my own food withdrawal long ago. But I was bedridden and felt like I was dying all the time, I couldn't eat that stuff or I'd feel worse. But I had to find it out for myself, nobody told me until I read it somewhere. I was also making a fantastic Caesar salad dressing out of pumpkin seeds and mustard and spices. And once you get started on natural foods like this, you feel better and your body starts to really like them. Then, after a while, the junk starts seeming like it really is - gross - and it loses its appeal. It's not hard, but it's learning something new. If you're lazy about it, you will drive yourself crazy with food. Don't think you have to have steamed veggies all the time and no fun stuff.

    I could go on a million years about new foods, but just check out some raw food websites and look at the more complex dehyrator recipes. You just have to play around until you learn what you like, then you start making up your own recipes.
    And take a look at the rawguru to see what kinds of raw foods are out there. I buy their almonds, which are soaked, sprouted and dehydrated with spices. They're expensive, but you could make your own cheaper.

    To sprout raw almonds, all you have to do is soak them overnight in your fridge. By the next day, they are all puffed up and have started to germinate. This deactivates the growth inhibitors which keep them seeds when they're dry, and the growth inhibitors make them very difficult to digest. That's why people soak their beans overnight when they make chili or whatever. They might not even realize why, but it's not to soften them. You can see the next day they aren't any softer. It's to get the growth inhibitors out of the seeds.

    Pork is bad and so is shellfish. They are dirty foods, which means they have too many toxins in them and you want to eat as clean as possible because you are going to ingest toxins all the time no matter what, you just want to keep it to as little as possible. Fish is okay, but shellfish are bottom feeders, which means, just like pigs do, they end up eating lots of waste of other fish: doodoo. Everybody knows pigs will eat anything.

    I would cut out fruit and juice completely until you get over the hypoglycemia. But while you're getting over it, use sips of juice when you feel it coming on. And get a good multivitamin from the health food store, non of that crap like Centrum. I like Alive Whole Food Energizer, but there are lots out there.

    I don't really avoid any spices, I use lots of the chicken broth and curry and a few others. If you suspect something is bothering you, it's better to leave it alone. Trying to fix digestion takes a long time, I've been on the diet for 6 months now and I'm not done yet. But once it's fixed, I'll have my life back, depending on how much damage my body has sustained, of course. It's just not worth the risk to eat "iffy" things. They can keep you sick or set you back once you've started improving. It takes so long, you want to just bite the bullet and get it over with. Your willpower is there, you just have to not dwell on temptation and all the crap you are missing. And don't go out with friends if they are going to stop at DQ or Pizza Hut. You won't be able to stop yourself and they certainly won't be of any help. They will tell you it can't hurt you, not just one bite, etc.

    I get all of my supps from Farr now but I used to get them from the vitacost store online. They are much cheaper. You can buy betaine hcl there or at any health food store. Make sure you get betaine hcl and not betaine. Sometimes, people confuse the two.

    What dose coq10 did you get? And is it a gelcap or a powder capsule? The gel caps are much better, that's also why they're more expensive. It's probably one of the most expensive supps I take but it's very important. I was taking 100 mg pills about 5-6 times a day in the beginning. Now I'm down to 2-3 60mg pills every day. Zinc, I take 25 mg with the betaine hcl with my meals 3x per day. I actually only eat 3x per day now instead of like 8x before!

    And what form of magnesium are you taking? The best forms are glycinate, taurate, malate and the ones chelated with amino acids. The best mineral pill I've found that really helped my poor heart, which always felt like it was being abused, is Krebs Cycle Chelates. It's minerals chelated with amino acids for maximum absorption. It is fantastic! I was taking them on an empty stomach like 5-6x per day. Now I don't take them because I don't need them as much plus I found out I'm high in copper so we are using another one. But it's not as good as the Krebs one.

    If you want to use a protein drink, I would use whey protein. You want a denatured one which means it's been processed without any heat and keeps the protein molecules from being damaged by heat.

    That's one thing I realized about milk long ago. It's still bad for us, but raw milk is better than pasteurized because the pasteurization process alters the milk protein molecule to where the immune system thinks it's a foreing invader. I noticed I could drink raw milk and not have the hay fever allergies, but it congested my liver. That's just some FYI about milk. It's really something you should just put out of your mind. You can make your own almond milk, just google for it. Put a little bit of vanilla in with it and it's delicious. It's even better with a date in there for sweetness, but you need to get over the hypoglycemia first.


    best wishes

    karen[This Message was Edited on 09/12/2008]
  8. Catseye

    Catseye New Member

  9. getwellgirl

    getwellgirl New Member

    Hi Karen

    Great to hear how well you are doing. I am actually starting the 3 day CDSA tomorrow but haven't been able to stop the betaine cos I cannot digest anything without them. I know I am not taking enough and this is bound to show up and I am going to look for an easy to swallow version so that I end up taking sufficient. Did you take up to 50mg zinc each day in divided doses? I take nearly this amount too but it hasn't done anything for giving me more stomach acid but that's probably cos everything is out of balance.

    Can you tell me what you took to kill of the yeasts which you have done so successfully. I know cutting out the carbs also would have helped and you did brilliantly with this.

    I let the diet go and now have all the yeast symptoms back pretty badly. Definitely hooked on the effect of sugar even though I only get it from a bit of fruit each day which I am going to have to give up. Also still taking a very small amount of Ryvita crispbread each day which is basically rye but it might have a bit of yeast with it too.

    Did I read you used to take hydrocortisone and Armour but have been able to give them up? What dose did you used to take. I have had to up my steroid to get some energy back and have noticed an improvement but I am sure my body gets used to the bit extra so I am going to take things seriously once I get the results back.

    Dr Myhill is my CFS doctor but I don't believe she is anything like as good as Dr Farr at what I need to improve. She will be interpreting the results, I sort of understand what it means but nothing like in the detail.

    Sorry for all the questions!

    Best Wishes
    Pam
  10. Atlanta8

    Atlanta8 New Member

    I've just been reading this post with much interest. I have a couple of questions though.
    What % woul you say you have improved since starting your new diet?

    Also, I think I still have active EBV (since my CFS got triggered by mono in July 07) - I was planning on treating that with Dr Lerner, but also looking into diet a few months prior to this. Do you think this is wise? If I do have active EBV, is the only way to properly recover to go on Valtrex, but ALSO sort out any gut issues, or should solving the gut help suppress the virus, in your opinion? I noticed you mentioned you had EBV? (skipped a few posts so may have missed how he treated this)

    And on the diet you are following, do you have to eat meat? I have been a vegetarian for 17 years and I can't face the thought of eating chicken or fish (I eat eggs though). If I make sure I get enough protein from lots of different souces, would that be ok? I could possibly compromise on the supplements, if I am unable to source veggie capsules but would still be uneasy with that though.

    Many thanks,
    Steph
  11. Catseye

    Catseye New Member

    Hey Pam

    What timing! I'm actually doing my 3rd test tomorrow. I had to give up the betaine hcl and enzymes and anything with vit c in it for 3 days, too. With the first test, this was particularly hard and made me feel pretty bad. The second test was better, but I still felt it. This time, no sweat. I seem to be getting a little tired today, the 3rd day, but nothing I can't handle.

    I'm taking 25 mg pills of zinc 3x per day, but zinc is also in other things I'm taking. I'm getting quite a bit of it - probably even more than 50 mg 3x per day. And just lately, after 6 months of the betaine hcl and enzymes, I feel some burning sometimes when I take three of the betaine hcl. So I think that means I'm starting to make my own acid again. But it sure took a long time, don't assume it's not helping, it's just taking awhile.

    I think that's where most of us get into trouble with supplements. Not only do we not really know what to take or how much to take, it's usually an educated guess, but we don't take it with the right things or for a long enough time. I was taking plenty of zinc before, but not with betaine hcl and not enough. It's ironic that virtually everything I'm taking now I have taken before. I just was not on the right diet, not taking enough of it, not taking it in the right combination with other things, or it just wasn't the right time for it.

    The yeast kill supps were ADP, which is an emulsified form of oil of oregano, and Dysbiocide, a bunch of plant extracts I've never heard of before. The brand of these and almost everything else I take is Biotics Research.

    The armour was 60 mg pills, I started with one in the morning and later I tried 1/2 in the morning and 1/2 in the afternoon, but ended up back at 1 in the morning. I weaned off them a couple of months ago or more, can't remember. And the hydrocortisone was 10mg per day, 5 mg in the morning, 2.5 at noon and 2.5 at 4 pm. I'd take an additional 2.5 mg once or twice per day if I was particularly active or something. I weaned off that before the armour, even. I haven't touched it in months. My last hpa axis test showed high cortisol, actually, whereas last year it was low.

    In thing morning, I'll do my test and then get right back on all my supplements. But I'm feeling really good right now, without most of them, and that is serious progress.

    no problem with all the questions, nice to hear from you! good luck with your test!
    love that collection tray, it's the same thing they serve french fries in at diners! did you notice that? hehehe

    karen

  12. Catseye

    Catseye New Member

    Hi Steph,

    I can't really say what percent I'm better, that's hard to say, but here's some examples. Before the diet, I was still getting post exertional malaise whenever I did too much - and this differed from day to day. I couldn't walk very far, couldn't climb stairs without great difficulty, or not by myself, I had to recline most of the time and I couldn't lift heavy objects. I went shopping quickly and had my friend push my cart.
    Oh, and I couldn't go more than 2 hours without food, I still had hypoglycemia. If I did too much, I had to stick around the house for a few days afterwards.


    Now, I can skirt around a huge store with a cart and stand and browse for over an hour, I can lift 5 gallon water bottles (fifty pounds), I can climb stairs no problem, walk long distances and stand for a long time, sit up for long periods of time, and I can actually run around a little. I don't get PEM unless I really overdo it now, and then I recover really fast, like within hours instead of days (or weeks or months in the way beginning, a few years ago).

    I wouldn't do anything like Valtrex without trying to treat the guts/immune system first. The medical profession only tells treatment plans from their point of view. The only way they will treat EBV is with Valtrex, so they say there is no other cure. But that doesn't mean you can't treat the guts/immune system and get rid of it that way. They pretty much say anything outside their treatment plan doesn't exist. That's very misleading and causes people to jump into trying drugs when they should be treating their guts/immune system. That's what I'm doing now, going after viruses and bacteria by giving the immune system what it needs to fight. We aren't targeting any virus or bacteria specifically, like the lyme or EBV, we're just getting the immune system working again.

    Once it's working, it will take care of everything. At least, that's the plan. So far, so good, too. I don't know anything about Valtrex, but I do now how the medical profession approaches infections. The guts/immune system has to be fixed or you are not safe from infections. Trying a particular antibiotic or antiviral medicine may kill off what's there (or it may not and from what I see on this board these things don't work all that well) but if you don't fix your immune system, you risk all of this happening again. In fact, it's probably certain.

    I can tell my immune system has improved because of the way my allergies have quieted down and so has my tendency to break out in cold sores whenever I eat nuts. I always have to take tons of lysine so that won't happen, but I've been forgetting to take the lysine and I'm still not breaking out. I guess I'll know much more when I get the results of this next test on Monday and I'll also be doing another lyme count next month.

    I have read that vegetarians will have a very hard time getting well from chronic disease like this one because of their restricted diet - it's the protein and B vitamins that are the problems because the body is having a hard time converting the vitamins and making the amino acids it needs. I tried to avoid meat a long time ago, but I still can't get along without chicken like 3 x per day. But if you take some excellent B vitamins like Country Life Coenzyme B Complex or jigsawhealth time released Bs, you may be able to get away with the eggs and whey protein.

    Is whey acceptable? Protein is one of the big problems, and eggs are great, but they only have about 3-4 grams per egg. You'd have to eat tons of them - probably like 10 or more every day. And I hope you're using cage free or organic eggs. Whey protein is great, you just have to research it a bit and decide on a good one, hopefully a denatured one, or one that is processed without heat.

    One thing I believe, you will recover faster if you can eat chicken. If it's the thought of eating the chicken, that's one thing. But if it's the taste, have you tried the organic version of chicken? It's quite different from the mass-produced, grain fed, antibiotic and hormone fed assembly line chickens. Just a thought. I don't eat any breasts, the meat is too "pasty". I just eat the legs.

    good luck

    karen
  13. ellikers

    ellikers New Member

    I'm waiting for my results (to some sort of major stool analysis) .... hope they have helpful news (one way or another).

    So much good info here. I'll check back later when I have results to ponder. :)
  14. getwellgirl

    getwellgirl New Member

    Hi Karen

    Yes I know what you mean about the collection tray, will never look at a portion of French fries the same way (not that I can eat them anyway)!!!

    Done 2 days so far of the test, not the most enjoyable of experiences but I have kept the amount of betaine as normal so that it will show how low I am still in it.

    Yesterday at my local health shop I found some flax seed bread with no yeast, also made from sprouted wheat and I had my first piece for breakfast with an egg and almond butter. My blood sugar has been better than normal on it so that's a good sign and didn't get rumbling and gurgling after.

    I also found some quinoa crackers with no sugar and thought they might be useful to top up between meals (with some protein) which I have to do especially if I want to go shopping or take my dog for a short walk.

    I am feeling quite strong about things cos I know I have had these gut issues for a very long time but I have never been able to give up eating only a small amount of fruit each day but this time I am really going to do it. I will stick with a small amount of probiotic yoghurt for desert plus seeds. I read that the yoghurt has predigested the lactose so it shouldn't be a problem but will keep an eye on how my gut feels after eating it.

    One thing I have realised is that my gut rumbles and blows up after only half an apple so I don't need anymore proof about that!

    Best Wishes
    Pam
  15. Catseye

    Catseye New Member

    Great, ellikers, I'm curious to see your results. There's so much room for variety in these tests, it's always a curiosity to compare each other's. Another poster and I have compared our results side by side and it's amazing how different they are. We're on completely different supplements!

    getwellgirl - it wouldn't be so bad doing the test if it didn't take so long to prepare the samples. YUCK!!! Maybe you'll get lucky and be able to eat more than me. My diet is so restricted and since it's working, frankly, I'm scared to add anything to it. It's such a long time before things heal or go wrong down there, and I've wasted so many years already, I just want to do whatever it takes to get normal. I sure would love an apple! Oh well, maybe next year! ANYTHING to get well!!!

  16. pw7575

    pw7575 New Member

    Hey Karen,

    I think you said that you did another round of testing on Monday. When do you get those results back? I am always curious to see what is happening with this. If you have time maybe you could pop in at the proboards group and post your results for us there too so that they can all see your progress.

    Take Care!
    Pam :)
  17. Catseye

    Catseye New Member

    I'll have the results the next time I talk with Dr. Farr. My appt is Oct 14. So probably that same day I'll be able to post them.

    I'm dying of curiosity to learn if I've gotten rid of most of the remaining bad bacteria or not. They seem to be what's really cramping my diet. I want some carbs!

    I've been lazy about going to the new site. I'll go take a look right now.

    see ya!

    karen
  18. pw7575

    pw7575 New Member

    LOL I am sure you are ready for some carbs after so long without them! Hopefully your results will give you the go ahead to add some into your diet. So what types of carbs would you add back in when you are allowed?

    How are you feeling these days? Are you still making steady progress or has it leveled off a bit? I hope things are still going really well.

    I saw somewhere that you compared results with someone else here who went through Dr. Farr. You said she is on different supplements than you are but is her diet the same? Just curious.

    I find all of this interesting. I would still like to get a CDSA done. I would want to go through a regular doctor to get insurance coverage but I am not sure how a regular doctor would interpret the results and I also doubt they would be able to recommend supplements.

    Anyhow...definitely let me know how it turns out.

    Don't hesitate to stop by the new group. It has a lot of nice features which MSN didn't have. I definitely like it better than the MSN site.

    Take Care!
    Pam
  19. Wolverine

    Wolverine Member

    Hey Karen. I actually had the CDSA years ago. I can't find my copy, but am requesting a copy of it from ARL.

    I did it somewhere between 01-03.

    I do remember a few things from it, I too had the following:

    Low Short chain Fatty Acids

    Digestive Markers – Meat Fibers

    Low levels of n-Butyrate.

    Thats all i can remember, but i didnt really do any solid treatments for a long enough time. Oh i tried Rejuven-X

    http://www.bioceuticals.com.au/product.aspx?function=displayproduct&productid=126

    which is supposed to be an intestinal healing drink, and do help alot of people but i coudlnt tolerate it (suprise). Actually that's the reason i never seem to continue on many supps except my 'well tolerated essentials' of high dose C, mag, calc. I've replied to you on my other thread too about the 'new huge supps list', lol.

    So glad you are getting well this way anyway!
  20. Atlanta8

    Atlanta8 New Member

    karen, does dr farr have a website i can check ot please? ive tried searching but cant find him

    thanks
    steph