Dizzysillyak

Hi, Just wanted to say that Medicare paid for ALL of my holistic tests, including stool tests, hormone / saliva tests, etc ordered by my integrative doctor. For me this negates the idea that any of it is a scam. That and we found things wrong with my body that explains a lot. I don't know why this type of doctor doesn't normally take insurance. Mine doesn't either nowadays but did when I first met her. In my case, it's been the best money I've ever spent on my health. The best part is that the tests she ran showed me a lot of what was going wrong in my body that no one else had ever discovered. I have no idea what it all means but my doctor does ... tc ... d

Hi, I'm not offended. I appreciate people giving me feedback. I HAD ataxia from 1990 - 2006 but it went away in Sept 2006. I had been on a GFCFSF + chemical free diet since 2005. I started the paleo diet 1 - 2 years later. I was already on the paleo diet when I met my integrative dr. The paleo diet is just eating bioavailable foods like organic meats, fruits and veggies. I follow Cordains idea of paleo not some of the others. IMHO, Dr. Terry Wahls has a great diet plan too. She recommends more veggies than I can eat but imho her concept is good. tc ... d

Hi, Integrative or functional doctors look at all symptoms as being signs that our body is struggling with digestive problems, inc gut bacteria, parasites and digestive enzymes, nutritional deficiencies, hormone irregularities, heavy metals, etc. With their objective being to rectify the root cause. Imho, dr terry wahls explains functional medicine very well in her ted video. Much better than me. If it were me, I'd go ahead and ask him about non traditional treatment options. He might surprise you. Tc ... D

I see an integrative / functional doctor who prescribes medications or supplements depending on which one she thinks will work best for me. If you're interested, you can google integrative doctor in your area you should be able to find one. I found my doctor by asking the people at a local health food store to recommend someone. I chose an md who was also into holistic treatments because I wanted someone who could handle any medical emergencies I had as well as guide me in healing my body. FWIW, My understanding is that this type of doctor will have you switch to a paleo type diet asap, within reason, to see if this helps. This diet eliminates all common food intolerances and chemicals. Meanwhile you'll have some testing done to determine your gut health, hormone levels, nutritional deficiencies, etc . I found out that my labs were off on so many things that I'd never even heard of, like hyperinsulinemia, DHEA and pregnenolone. So far, diet and learning which supplements or meds my body needs has helped me tremendously but I still have OI and PEM. But after being disabled for 23 years, I probably have permanent damage at this point. I had ataxia for 16 1/2 years so I can't imagine this type of brain damage completely heals. I wish I'd made these changes sooner ... tc ... d

Hugs. I feel so bad for you because I've been here too. Don't even ask me how I got over the barium solution I had to drink once for a gi test. I ruled out thoughts of calling 911 due to embarrassment. Suffice to say it felt like it had turned into concrete inside my colon ... I had to use saline enemas with a little oil in them for several years until I got the hang of taking Natural calm daily, watching my diet for too much meat or dried beans and using suppositories when needed. At the risk of beating a dead horse, Natural Calm, mag citrate, is a powder that you add to warm water and you can only get from a health food store or online. It works for me when the others didn't. I don't know why. But even then, it has to be really warm for it to work for me. Cold or room temp won't work ... I hope you find something that works for you. tc ... D

Thanks Katy. You're so lucky your doc warned you about this. I didn't realize what was happening until the pain became severe and I couldn't walk or move my shoulders. I was on Tyl with codeine AND Ibuprofen with codeine for at least a week. Then I was on Aleve and Advil 24/7 for a couple of weeks after that. Thankfully, that parts over ... I even had both of my knees go out on me while shopping a couple of days before the extreme pain hit but didn't realize what was up. When I fell I damaged my left knee which isn't helping now either. I had to google this to figure out what was happening. It's sad to think how many people are taking this medication and not realizing it's causing joint problems for them. I have a freind who complains about her knees and has taken this med several times but never made the connection. tc ... d

I used to have constipation all the time until I started using Natural Calm, mag citrate, every day. I've tried everything else, more oil, fiber, miralax, etc etc but this is the only thing that helped. It took awhile for me to feel good on this but now I'm good. I need to put it into really warm but not hot water too. It just gets absorbed better this way. I saw that you'd tried this but maybe it was the brand of mag citrate you were using or maybe you didn't give it long enough. I wouldn't expect you to feel good on this at first but overtime IMHO, your body should adjust to it. Start with a 1/4 of a tsp then increase if needed. Diet too plays a role for me too. If I eat too much meat or dried beans, my constipation is worse and I need to take Natural Calm 2 - 3 times during the day to get things started again. This always upsets my intestines for a few days until I get whatever I ate out of me. Glycerin suppositories and enemas work for me too if I'm in too much pain. I just get the Fleet brand of suppositories and store brand saline laxatives. I haven't had to use anything but the mag citrate in several months now tho. kow .. I suspect it's because I backed off eating so much meat. tc .. d

Ditto ... It's so nice to have people in our lives who really understand what we're going through. I've learned so much from forums like this. THANKS ... D

Me too. Isn't this a sign of dehydration ? I'm never hydrated despite drinking plenty of water, etc ... I'm currently using Avalon Organics but have to repeat throughout the day. I'm sure part of my problem is that I eat throughout the day too so it gets worn off. tc ... d

YAAAAAY !!! Always good to hear that someone is feeling better. I've been paleo for about 5 years now and it certainly made a difference in my health too. ... tc ... D

Thanks Bebe. I took a look at that book and just from the sections you can read for free I didn't see anything that I didn't know something about already. FWIW tho, I get irritated when I read that our attitudes can make a difference in whether or not we heal. I was being very negative about healing back in 2006 when my ataxia majically resolved and I started walking normally again after 16 1/2 years. I was totally shocked when my legs just stopped feeling like they weighed a ton each and I stopped falling into things. It was probably just from removing the gluten, etc from my diet. It certainly had nothing to do with my mental health at the time. LOL ... tc ... D

Hi aussie, It's interesting that your pots comes and goes months at a time. Have you seen an integrative / functional doctor that might help you track this down via holistic and traditional testing? I'm thinking yours could be gut related. H pylori and parasites made my oi much worse. Treating helped but I have pots daily. I keep saying I need to re-treat these but something keeps nailing me. This time it was a flouroquinolone. Imho, Everyone will cope with a chronic illness a little differently based on their coping skills, degree of medical knowledge, availability of doctors who understand their illness and impact the illness has on their lifestyle with financial impact being the most important. But most will feel overwhelmed and greive for their former lives. For me there's a big difference between obsessing about an illness and learning to manage it. Watching my symptoms has led me to certain treatments. Like knowing when I need to boost my blood glucose or have more salt or take another digestive enzyme or lay down, etc. In some cases if you know your symptoms triggers you can avoid or treat these. Like knowing gluten will cause me to have ataxia and myoclonus. Or soy causing phlegm. Etc. I've been totally disabled since 1990 but didn't start trying to resolve my illness till 2005. I just trusted my doctors and took whatever meds they gave me. I was told that there wasn't any cure and I believed it. I didn't understand how foods and toxins could affect our bodies. Duh ! Tc .. D

I'm just getting over a bad reaction to this. I was given this med in Jan for pyelonephritis (kidney, bladder, ureter infection). It's been a month and I still can't move my arms over my head all the way, reach behind my back or keep my hands on the top of the steering wheel. My knees feel like they're going out on me so I have to use a motorized cart to go grocery shopping. I'm still getting tired extremely easy. My reaction from this medication is almost exactly the same way my CFS/ME/FM (with OI and ataxia) started back in 1990. I took 3 rounds of antibiotics (not sure which meds yet) in Jan 1990 for green gunk in my lungs and was never the same. Due to the similiarity in my reaction, I suspect it was a quinolone tho. IMHO, this med needs to be taken off the market. tc ... D http://articles.mercola.com/sites/articles/archive/2009/07/18/Antibiotics-to-Avoid-Like-the-Plague-Due-to-FDAs-Oversight-Failure.aspx

HUGS ... I get it ... That's great that you'll be able to make it for the wedding, etc .. I've missed out on a lot of family functions and no matter how many times it has happened over the years it never got any easier. Like you, I just keep reminding myself of all the good times. I had a couple of ideas on travelling that might help you not get symptomatic on the flight. And maybe you wouldn't crash after you got there if you didn't get sick on the flight. Taking precautions is helping me travel. Some of us are finding that we have mast cell problems and that the smells, etc on planes affect us. So taking an antihistamine or two might help. And if you're not already, some of us use the wheelchair service to avoid standing or using up any more of our energy than we have to. I find that my stress level is minimized this way. I also always ask to have the seat next to me empty if possible. That way I can put my feet up on it. The airlines has done this for me on several occasions free of charge ... And be sure to bring real food with you, not just snacks. Travelling takes extra energy so we need the nutrients .. hth ... D

Hi dani, Dealing with freinds and family can be so dofficult at times. Esp if they don't get how limitted you are. My siblings seem to get it most of the time. But I can't say the same for all my family. Did you try texting her back and saying that you're sorry you can't do this and how sad it makes you that you can't spend the time with your neices or nephews ? And even tho it was bad timing, it sounds like fun. Are they old enough to help ? I understand your stress level because I'm sick too but maybe she's too stressed out and just needed some help. Esp If she's a single mom, she may be feeling overwhelmed. Good luck on your move. D

On a lighter note .. I put on about 10 lbs in my belly in the last two months and dreamed I was pregnant last night. Lol ... My subconscious is telling me it's time to lose the fat. I have a problem with this when I'm taking too many sleep meds or supplements. It's one of my body's clues that I need to lower my dose. I used to do this tho when I was eating gluten, etc. Gluten really messes with my head. Tc .. D

Hugs. I hope whatever symptoms that brought you to write this have lessened. Fwiw, I'm finding that taking 5htp helps me keep my mood up. I just realized that it's good for physical pain too. Apparently physical pain depletes serotonin. Tc ... D

Too little salt makes my bp run low but I only use the rda of 2500 - 3000 to keep it up. More than that and I feel pickled. Lol. I suspect they'll stop recommending extreme salt loading someday. It's not good for our bodies. I feel better when my bp is higher but it doesn't fix my oi. Tc ... D

Depending on who did your parasite test, it may not be accurate. I was told that the metametrix test was the only one that looks for DNA so it's more accurate than the others. But even then some parasites can be missed. I use papaya seeds, pineapple and raw pumpkin seeds on a regular basis as a precaution. But I need to look at better options. I've heard of protozoas but haven't looked closely at these. Info on which parasites, bacteria, etc is favorable is conflicting at this point so I'm not sure if I'd try to kill those off or not. Issie knows more about this than I do tho ... I had cod worms and can tell you those weren't good for my gut. I got them from eating cod fish that I hadn't cooked all the way. These worms hide out in between the meat layers so they're had to find. I found them half way through eating the fish ... I'd gotten the cod from Publix so I just assumed it was safe. Some people continue to get or identify other food intolerances after removing common intolerances so you may want to look at the rest of your diet. I had to totally give up all red meat, raw onions and garlic last year. I'm mostly ok with most foods in the paleo diet. Also, cross contamination from the foods you're intolerant too can be a big problem for some. Be sure to check all supplements for cc too. I had to change my digestive enzymes over the years too. I went from taking Digest Gold to Virastop and Candidase (these are the strongest otcs I could find) and I'm now on Creon, prescription, but playing with taking Candidase to help me digest cellulose. And I take Virastop if I wake up in the moring and can feel food stuck in my stomach or I have stomach cramps. So far it's working the best for cramps. I take it on an empty stomach. If you decide to try the pepto, Natural calm, mag citrate should keep things moving. I read that pepto can't be considered a thorough treatment for h pylori so IMHO, if you're positive, I'd see a doc for antibiotics. My integrative dr told me that my infection was too strong to trust anything but strong antibiotics. The treatment seemed to worked because my next metametrix test came back negative. hope you feel better soon ... d

My flare that sounds like your was from getting h pylori and parasites at the same time. Have you been tested for these ? I'm not a doctor but I was thinking that a quick home test for h pylori would be using pepto bismol. My tongue turned black from killing off the h pylori. Pepto is said to kill h pylori but if you're positive I'd see a doc for real testing and meds to make sure you kill it. There are parasite treatments on the web or you can get tested by metametrix then treat. I was already using digestive enzymes and avoiding certain foods when this hit so I knew it wasn't that. Gluten is notorious for causing gi problems with or without causing celiac disease. Hope you feel better soon. D

I'm too new at defining how I flush so I can't say if mast cell flushing works the same way as oi flushing. Maybe another mc / potsy will know. I didn't know what flushing even was until late last year. About the low blood sugar, have you tried what I'm doing ? Granted we're supposed to avoid doing this but sometimes we just need to cheat in order to live our lives. Since we both have hyperinsulinemia, I thought it might help you too. Another trick I learned to keep me going was drinking a tiny bit of coffee with real sugar in it. Dr myhill recommends caffeine + ribose to her cfs patients for renewing their energy in an emergency. I think she said that this combo recirculates adp to atp. It's easier to find straight sugar than ribose. I'm seriously over reacting to coffee nowadays so I would only use this as a last resort but this worked for a few years.. Resting as much as possible during events like this helps but for those times when we need to push it's good to know a few tricks. I have cfs too tho so I'm not sure if you can use what I'm using. Fwiw, I use klonopin to undo the effects all this kind of stress this puts on my body. Do you have a treatment for when you're overly stressed ?

Doesn't your breathing get shallow when this happens ? Maybe you're not noticing it ? Sitting on stools don't help me either. I also need to recline after eating to get the knotted feeling out of my stomach. Laying down post eating starts an onslaught of digestive gurgling. It's like peristasis won't start until I lay down. Light meals help.

Congratulations ! What an exciting time for a mother. I understand where you're coming from tho. I've been sick for 23 years and have endured many social events for my kids. I know more now than I did so maybe I can help. On the low blood sugar, have you experimented with eating or drinking something super sweet like hard candy or orange juice every 15 - 20 minutes ? I'm finding that if I do this I'm not feeling the dips I was before. This is especially true if I'm active, like walking or doing laundry. Keeping this up is critical for me. Flushing is a mast cell symptom but I'm not sure if oi alone does this. Have you tried mast cell meds or supplements yet ? Tc ... D

Actually, sitting with feet elevated while cooking helps me a tiny bit but not completely. I've only tried spanx bottoms once but they seemed to help. I unknowingly had a kidney infection that got ugly right after that so I didn't get to try these again. I'm going to though. And taking 5 mg Wal-zyr every few hours helps me sometimes. NOTHING works as well for me as laying down flat tho. *****, doesn't it ?

I suspect it's from Hypoperfusion. Dr peckerman explains this in a talk on cfs. I've had this for 23 years. My only remedy is layung down so my upper body gets enough blood. Tc .. D