Jump to content

Dizzysillyak

Members
  • Posts

    1,211
  • Joined

  • Last visited

Everything posted by Dizzysillyak

  1. Hi Julie, I'm sorry to hear you're having problems again. If it makes you feel any better, I did the same thing. I felt great when I started taking zyrtec (Walzyr) then it stopped. My problem is that I started eating all of my trigger foods anytime I wanted. And obviously I can't do that. FWIW tho, your symptoms now may not be related to mast cells and could be from getting a bug or something too. Have you seen your doc to get some labs drawn ? hope you feel better soon ... d
  2. I'd like to find something like this that worked too. I've tried meyer's cocktails + glutathione push but it didn't do anything for my cfs or oi. I was just as tired and still had oh and pots. Saline ivs never made any difference. I stay well hydrated tho. The only improvement I saw from these ivs was that when I started these I had severe pain at the injection site and down my arm if we tried to do these too quickly. By the 5th - 6th iv, I didn't have any pain and we could do these quicker. So the time frame went from 4 hrs to 1 - 1/2 hrs. My veins were still hard to find after all these tho. Either that or the nurse wasn't very good at finding a vein. I've had more success with diet (wahls / paleo) and mast cell meds. I suspect my oi is from angioedema from mast cells or food and chemical intolerances or allergies. I'm actually allergic to most things on the planet I'm a celiac too tho so eating gluten for 50 years wasn't good for my body. Nerve damage is a possibility. Tc .. D
  3. Kewl. Glad to hear that you're feeling so much better. Standing up longer is very encouraging.. My oi has only responded to allergy meds but I clearly have angioedema from allergens. I was shocked at how much my diet contributes to my symptoms too. I've tried to go without meat before but it makes me feel too weak and eating healthy meats that I'm not intolerant of always makes me feel stronger. You certainly have a nice hubby. Even after 7 years of eating healthier, I find chips hard to resist. I miss the crunch .. I still haven't had time to google how different pathogens stay alive in our bodies. As an ex kombucha grower, I'm interested. Good luck with this. Dizzy
  4. Hi Dani, I went thru this 20 years ago and the judge just asked me questions that I either could or couldn't answer. Some were about my health others about my life. I'm surprised that your attorney has given you instructions on what to say or not say. Mine just told me to answer the judge as best as I could. I was nervous too but as it turned out I had a judge who'd seen a lot of sick people and understood. I felt intimidated at first because I knew I couldn't think straight but I was too sick to have any control over what I said after awhile. He told me at the end of the mtg that I would be approved. : ) Do you have letters from co-workers or freinds ? I "think" that helped me too. My health records spoke volumes tho. I'd use the wheelchair if you need it. No need fainting, etc if it would help. I doubt the judge will think you're exaggerating. I'd expect him to ask about it but just answer him honestly. Try to relax if you can. My experience was stressful but definitely not worth the state of anxiety I put myself thru that day. Tc .. D
  5. Hi, I'm a little confused by your description.. I had the feeling where my lungs actually stopped working during a two hour seizure once. I had to force air in and out of my lungs by taking huge breaths in and blowng it out. This resolved when the seizure ended. Just fyi .. I was using an emt provided oxygen mask too but it didn't help. They didn't know what was happening and kept telling me not to breath like that. And I've had the suffocating feeling your describing. Mine responds to 1 - 2 tsp children's dye free liquid benadryl. I've never tried adult benadryl for this because it dries me out too bad. I'm taking 25 - 40 mg zyrtec during the day for swelling too but I still need the benadryl if this feeling comes on. I suspect it's just part of my undiagnosed mast cell problem. I have angioedema but it's mostly internal so I didn't realize it. Internal angioedema appears to be behind my pelvic and bladder pain and oi. Many of us are finding out that we have mast cell / allergy problems and meds are helping. Granted finding the right med is a pain. I have to avoid my known triggers too. I tried adding them back in. I was ok at first but later failed. Hth ... D
  6. Even tho you didn't ask I thought I'd mention that gluten intolerance is known for causing the runs. Just go to a celiac support group meeting and look at all the people who raise their hands when asked if they had this symptom ... lol ... Mine was so bad sometimes that I couldn't leave the house if I'd eating anything that day. And I could have explosive d at any minute. I finally reached a point where I couldn't keep any food at all in and my GP recommended the elimination diet. WALLAH !! At 50 years old my 15 year old problem was solved ... I've never had it since. FWIW, I'd seen a gastroenterologist for about 6 months who didn't find celiac disease. I have no idea if he even looked during my endoscopy tho. He was a moron .. tc ... D
  7. Have you tried gf pancakes ? Regular wheat pancakes left me feeling sick too but these don't. I just got off a homemade GF teff pancake w / maple syrup and walnuts kick. YUM ... There are a lot of gf pancake recipes on the web. I make mine high protein ( for my hyperinsulinemia ) with flax, nut meal and egg yolks. Teff doesn't have gluten in it so I used xanthum gum to hold it together. FWIW, if you decide to try the cayenne pepper recipe, you'll want to go easy on it. It's really potent in water. I got the idea from that famous cleanse program but I can't think of the name right now. (Master cleanse ? ) People drink this all day to keep going. Oops, I forgot it includes a tiny bit of lemon juice too. Pamela makes a gf molasses cookie but I don't know how much molasses it actually has. It might help you come up with a cookie recipe tho ... tc ... d
  8. I don't have tachy so I don't know how much to use but it's good to know this might help. It's a good source of iron too. I'm not much of a cook either so I usually just eat it from the spoon. Lol. I've also mixed it in a bottle with water, celtic salt, tiny bit of lemon juice and teeny tiny pinch of cayenne pepper for a quickie pick me up if I don't have time to make a smoothie. Tc .. D
  9. Hi ima, I just wanted to let you know you're not alone and wish you luck on your surgery. I've been trying different ways, inc eating rare steaks, taking mega b supplements, drinking fresh coconut water, eating a ton of leafy greens, juicing, probiotics including kefir, etc etc to counteract this too but haven't found anything yet. It always takes me 3 - 5 days to recover. I can't handle ensure or boost but that may help. I was wondering if your hematologist might be able to do for you via IV while you're in the hospital. Have you discussed feeling so weak after blood draws with him ? I'd love to know what a hematologist thinks about this. Tc .. D
  10. Hi issie, I tried the active form of thiamine for about 3 months earlier this year but didn't notice anything. I'm not sure what I'd be looking for tho. My oi has responded to taking mc meds but it's not consistent. Meaning I can stand or sit without feeling the urge to lay down for hours at a time. I did one pmttt and passed too. This is the first treatment I've tried that stopped my oi. I have angioedema, internal which is why I didn't recognize my pain was from swelling, so it's a given that mc meds would help. Most of my symptoms, except oi, fatigue and pem were alleviated by changing my diet to gfcfsf, chemical free. Then the paleo diet helped me with what I call pre-seizure feelings. I get shakey like I do from hypoglycemia but eating won't resolve it. Klonopin or eating and laying down with my eyes closed in silence for usually an hour will. I just tried eating some "gf" processed foods again recently and again feel like I'm on the verge of a seizure. I had a two hour seizure last year but mostly I get mild petite mals frequently throughout the day. I'm super sensitive to gluten, had ataxia for 16 1/2 years, so I suspect this is behind my grain (gluten cc?) / seizure connection. Either that or my hyperinsulinemia. Or both .. I had a positive response, improved muscle weakness, to adenosyl cobolamin but that's it for b's. My b12 was low normal after I started walking normally. So b12 didn't seem to be involved. Tc .. D
  11. Count me in too. Being chronically ill is tough. It's hard to feel sympathetic towards someone you know is going to feel healthy once their virus, booboo, etc is over. It feels good knowing you all understand. Thanks. I get tired of making lemonade everyday but after upteen years of this, it's the best coping mechanism I've found. If I don't I get accused being a whiner who's only looking for attention. Aaaaagh ! Tc .. D
  12. Amy, If it makes you feel any better, many of us are on similiar roller coaster rides. So you're not alone. Our bodies are all a little different in how we respond to each treatment which is why our doctors can't just wave a wand and make us healthy. ; ) They do see trends tho and via testing can give directions on what you should respond to. I get down when treatments fail too but finding a new treatment option motivates me again. Try to think of your new diet, etc as a lifestyle change not a quickie diet to drop weight. You're building up your imune system and your knowledge base. Tc .. D
  13. Hi amy, I can relate to what you're going thru. I've been seeing a functional dr for 4 years now and while we've identified and corrected many of the leaky gut problems, I still need to lay down most of the time in order to feel healthy. Granted these tests can't pick up everything and I may have unknown parasites, bad bacteria, etc. And I'm positive for high mercury which I haven't treated yet. So while none of the leaky gut treatments I've tried so far helped my oi, mast cell meds have. I have anaphylaxis and angioedema so needing allergy meds is a no brainer. Which explains why I didn't figure this out .. Lol. More and more of us with oi are finding out that we have mast cell problems. Imho, Waiting for the medical community to catch up to what we patients are learning will only hurt the patients. Most days since starting the mast cell treatment I haven't felt an overwhelming need to lay down like I used to. Kow. But I still feel better when I take the time to lay down and allow my blood to circulate properly. Exercise is an option I'd try if I had someone cooking and cleaning for me. But as it is, my body needs to rest. I'm trying to narrow down what meds to take and what foods or chemicals I need to avoid but it takes a lot of trial and error self testing. It appears that Wal-zyr, Walgreens brand zyrtec tablets, helps me the most. Personally, I'd skip chasing a pots dx and stick with your functional doctor. Six months isn't really long enough to see major improvements. It took me a whole year after giving up gluten to walk normally. Hopefully you're on a healthy paleo type diet and are in the process of eliminating your food and chemical triggers. Tc .. D
  14. It's hard to say. I'd have been sick both from eating sausage and eating so late at night. imho, because having a bm eliminated your symptoms your body just needed to get rid of whatever it considered toxic. Mast cells don't need to be involved here. I understand your constant hunger tho. How about sticking to easier to digest foods that late at night ? I do well with peeled apples. Also, eating more meat throughout the day should help. Can you eat nuts and seeds ? There are flax bread recipes on the web that can help satisfy your hunger. Tc ... D
  15. Hi kim, I'm obviously not very good at explaining stuff .. Lol ... We're not going to have the same triggers. I jealous that you can eat tomatoes tho. I love anything with tomatoes in it.. I had body wide fibro pain and muscle spasms for years stating in 1990. In the beginning, my car ins co paid to have a massage therapist come to my house 3 times a week for several months but it didn't do anything for me. I'd been in two car accidents the year prior to getting sick so we had no idea what triggered my bodywide neuro problems. I was like this for years and took muscle relaxers and pain meds most of the time. After awhile it got to where I only had pain if I did anything physically taxing. Yardwork, vacuuming, bringing in the groceries, etc. I was like that until I went on the elimination diet. Then I narrowed it down to tomatoes and bacon. And now I don't have fm pain. I hav pain from the car accidents tho. And I get pelvic and bladder pain from eating nuts and chocolate. Actually I appear to fine with walnuts. I'm a mess ... Lol .. Tc .. D
  16. Your reaction to those meds sounds very common according to what I've heard and experienced. I tried some of these in the 70's and then again in the 90's and my doctors knew then that a lot of people were having bad reaction to these drugs. I can't believe they're still trying to get patients on these. What's really weird is that by now they've heard from their ex patients how these caused bad reactions. Have you tried changing your diet ? Starting with eliminating the common food intolerances and all chemicals ? More and more of us are realizing the benefits of avoiding all the toxins in our food and environment. I'd suggest the Wahls / paleo type diet. Taking 50 - 100 mg of 5htp at night should help. Hope you feel better soon. D
  17. Hi Kim, I just realized that I completely forgot to say that I had discovered bacon and tomatoes cause my fm pain and muscle spasms a few years ago. I was already on the gfcfsf + chemical free diet and most of my symptoms were gone but I was still having pain. Thru process of elimination, I found that these foods triggered my fm. I tried these many times over the last 7 years, including just recently, but they still cause pain. I'd hoped taking mc meds would help but it didn't. I suspect I have another trigger that I rarely eat because once in a blue moon I get my pain back for a couple of days. Tc ... D
  18. Hi issie, I'm supine every hour at least again so I hang out on forums. Wal-zyr (25 - 30 mg) helped my oi tremendously at first but was making me feel drowsy. So I started experimenting with different meds and not taking so much zyrtec. I took 35 mg Wal-zyr today and nothing else and felt much better tho. I'm sipping green tea to counter the drowsiness. The mc forum I'm on starts out with mastcelldisorders in the forum name. We have a mast cell section at Pheonix Rising now too tho. And we've got some people who know a lot about these. Not me yet but maybe someday. I'm xchocoholic over there. I'm looking forward to seeing what you've been researching and experimenting with. My fillings were removed in 1992, so I'm ok there. I had a mouthful and I remember my dentist saying he was trying to keep it from getting back into my body as he removed it. So whatever made it thru may be gone by now. I was eating a lot of fish but backed off recently. I've yet to seriously address chelating heavy metals but I've eaten tons of cilantro over the last few years. I need to re-treat for parasites too. I never did the second round because treating the first time wiped me out so bad. I'll look at this again after the holidays. Tc ... D
  19. Gee I don't know about this doctor, issie, ; ) ... Where are you hanging out nowadays ? My body craves magnesium. I have to take Natural cal, mag citrate, everynite to have bowel movements. I take Doctor's best chelated magnesium for pelvic pain too. If I remember correctly, my doc said that mercury pulls magnesium so that's why I need it. My labs showed high mercury. Btw, are you on the mc forum ? We could use your expertise there too. Tc .. D
  20. Hi elena, Your story is very inspirational. I may even give up chocolate again. ; ) I can't do the mashed beet roots for life tho. Lol. Fwiw, your experience is very common on the mast cell forum. I'm not trying to talk you into anything but if you're curious just google mast cell forum and it's the first one. Most, if not all of us have gone the route you're on dietwise. The owner started this site because she'd been down this route. I'm sorry to hear that you were having anaphylaxis daily and glad to hear that it's over for you. I'm struggling with this too. I was planning on asking my doc for something to stop this the next time I see him. So while steroids can cause other problems do you think it may have reset your system so this stopped ? I actually have chronic low blood sugar so higher would be great. My problem may be stemming from living in a building with dirty a/c ducts. So until I can move, I'm stuck with this. The first night I slept here the air was so toxic I had to sit by an open window in order to breath. We've cleaned the a/c which helped but the fiberglass duct work is brownish yellow and needs to go. I've been here 18 months which coincides with my anaphylaxis. I had no idea what I was getting into. Tc . D
  21. Hi kim, We have a similiar background which is why the mc protocal may help you. Have you looked to see if high anas are linked to gluten sensitivity ? Or maybe to other foods or chemicals ? I started having allergic reactions when I turned 19. I'm 57 now. I tested positive for almost everything on the skin prick test about 8 years ago but I didn't stay on allergy meds because they make me feel drugged. Last year I started having episodes of throat swelling so I started taking Benadryl when these happened. Now these are happening daily so I need more meds and an epi pen just in case. My allergist and I are working on which ones are best for me at this point. I hope you'll find that you need less meds for symptoms if you get your allergies and/or mast cells under control. I haven't tried taking supplements yet because I have anaphylaxis but they might work for you. I'm post menopausal so keeping weight on isn't so hard anymore. ; ) I'm on my version of the wahls diet and eat nuts, avocados, meats, plenty of fruit and veggies, etc. Grass fed meats like Lamb are a good source of calories. I just started eating teff pancakes (yum) with maple syrup and walnuts last month and it appears to be making me chunk up. It's the first grain I've had in 7 years that didn't make me feel weak. Granted it may have nothing to do with teff. I'm just experimenting with it at this point. Legumes are still out. Tc ... D
  22. Hi kim, Aren't you on the mc protocal ? Fibro has been linked to mast cell dysfunction. There's a great article written by Cort on Pheonix rising. It's under forum homepage articles. The article was on using ketotifen but many of us are using or at least trying other allergy meds. My me/cfs/oi started out with my whole body falling apart within a couple of months of getting a virus in 1990. Whether the virus caused it or not is debatable. I've responded positively to dietary changes and now the mc protocal. So I suspect my diet contributed to my level of disability. Continuing to eat the same foods, esp gluten for 15 1/2 years post me/cfs dx, may have caused permanent damage. I'm mentioning this because I don't see chronic illness as always becoming worse over the years. Taking steps to help your body function can help. And may reverse it. Tc ... D
  23. Hi alice, Sorry to hear you're dealing with this. While I don't have experience with with exactly the same parasite you had or your treatment I have been treated simultaneously for parasites and h pylori. I had orthostatic intolerance prior to getting these but they made it so bad I could barely stand up. Assuming that your treatment killed all your good pathogens have you tried taking strong probiotics, s boulardi and eating raw gently washed organic fruits and veggies. By gently washed I mean remove the critters you can see but don't soak or actually wash off the good pathogens found on raw organic fruits and veggies. Organic meats are safer too. My h pylori and parasite treatment left me feeling puny for a few months until I took 2 Metagenics probiotics and 1 s boulardi daily for a week - month ? You may respond quicker. I actually had a freind respond totally to taking only 1 probiotic once. Color me jealous .. Lol ... You may need to treat for candida overgrowth too. I used Candidase, virastop, several candida killers, Candida diet, and probiotics. Fwiw, I didn't know about s boulardi at that time and I have no idea if it would work but it might do the trick. It's known to take over. Go slowly and watch for allergic reactions to anything of course. I still have oi but it's responding to mast cell / allergy meds. I've been disabled / mostly couchbound for 23 years tho. Tc .. D
  24. Cool. I'm so happy to hear that you're feeling healthy on your regime. : ) I was shocked and angry when I learned how much diet can affect our health. My signature states how many of my symptoms just disappeared from changing my diet. I wasn't sure from your initial post if you were avoiding "gf" processed food. Because I'm a celiac and I attended celiac support group mtgs, I got suckered into trying those for 2 years before someone on another msg board told me about the paleo diet. I still fall into that trap sometimes because these foods / treats are just so tempting. Granted some celiacs seem ok eating all those "gf" foods, but a lot of us aren't. Studies say that they're still getting villi damage from gluten cross contamination but some just don't feel the effects. Or if they do, it's not enough to get them to stop eating these "gf" foods. Sadly, I totally understand the addiction tho. I wanted to mention that although you're feeling healthy, your food intolerances may indicate that you have mast cell problem. I'm new to the mc info but I've been able to eat some of my trigger foods while on meds. Not my best idea but in my defense, it's mostly chocolate. If I had access to someone who knew a holistic route that actually worked I'd try that. I'm seeing mixed reviews from people trying these. So far since I have anaphylaxis / throat swelling almost daily and the meds I'm taking are helping I'm sticking with drugs. If you're interested we have info on mast cells here. Tc ... D
  25. Congratulations ! You're going to make an excellent doctor. Tc .. D
×
×
  • Create New...