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Flowers for Algernon...Coming undone

Discussion in 'Addressing Biotoxin, Chemical & Food Sensitivities' started by Misfit Toy, Feb 26, 2013.

  1. Misfit Toy

    Misfit Toy Senior Member

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    If anyone remembers any of my posts, I have been on a food allergy shot for almost 3 years. A shot from Europe that costs $300 a month. Well, this last one that I had has caused me to come undone. It was 2 weeks ago and I have not slept since the shot. For so long, this shot has helped me with eating food, not having an allergy to foods and getting rid of the listlessness and depression I had from leaky gut syndrome. I had a major rash all over my legs before the shot and now, I don't have it anymore.

    When I told my doc yesterday that I have been wired and sick since the last shot he said, "Let's stop it." This to me was worse that being told I had cancer and was going to die. To live the way I did before the shot...I don't think I could go back. I was allergic to everything. Everything.

    The appointment was cut short and he had to take an emergency phone call. He recommended that I go on this new supplement called "Entero Win" for leaky gut syndrome. Well, I took it last night and I feel like I am been plugged into an outlet. I am so sick. $45.00 later and 5 pills taken and I am dying. I am sweating and freezing and I feel awful. I have been in bed for 24 hours with not one moment of sleep. Not even one.

    I emailed my doctor last night telling him how upset I am that he wants me to stop the shots. He acted so flippant like it's nothing for me to stop them. He has no idea how they have changed my life.

    What am I so upset about aside from the fact that I am so insanely sick? Everything. I am angry that after 13 years of seeing me, he doesn't have it written down or documented how much they have helped. I am angry that every time I come in, he is selling me supplements. I am on disability and I am not made of money. I am angry that I am supposed to go away on vacation in 2 weeks but may have to cancel it now. I can't even think straight and I was going to travel alone to Punta Cana.

    I am angry because he confessed today that the dosage of the shot can be lowered. And...you are just telling me this now after I ask you????? Why didn't you tell me that yesterday? WTF?

    I am a mess and it reminds me of Flower for Algernon. How one day you can feel good for a spell. You are getting things done and how the next, you can be on death's door. I blame my physician partially for this. For not listening, for not taking the time to really think and to not truly follow just what is going on with me because his mind is already onto the next patient since he is overbooked.

    I am done with supplements. Is anyone else feeling this way? Do you feel tired of supplements being thrown at you? Thousands and thousands of dollars spent on more crap that doesn't do anything, or makes you sicker. I have the MTHF mutation...a methylation gene missing. Great. Do I want to treat it? No. To see if I get even sicker? No thanks.

    I read what someone wrote earlier on another board about staying away from doctor's. Honestly, I want to do that. I know more than they do and I am sick of being the better doctor. I have had leaky gut syndrome forever and there is no end to it.
  2. taniaaust1

    taniaaust1 Senior Member

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    It sounds like he was concerned when you told him that the last shot had me you sick. In a way he did the right thou by taking you seriously when you told him you'd been sick since the shot. It makes sense for a doctor to say stop it if something is making you sick and you've been on it already for several years so probably was time to reevaluate your whole situation at that point. Maybe it would of turned out you didnt need the shots no more after being on them all that time? Things are often trial and error, its the only way to really know. There is a good chance that when you try a lesser dose that you will find you still cant take it if you body has developed some kind of intollerance to your current treatment. Whatever you tried was going to be a trial thing due to the change in your situation.

    With doctor giving you supplements to trial what else is he supposed to do?? give you meds instead which are far more likely to cause side affects or reactions? Try nothing at all for you? Ask yourself what are you expectations of what your doctor should be doing for you? (maybe it would be helpful to share whatever your expecations are with your doctor). Doctors are in a hard place when it comes to our illnesses as its a matter of trial and error as we all are different.

    I went 12 years with doctors giving me nothing at all for the CFS (due to no approved supplements or meds for it). It was horrendous them doing nothing at all to try to help me to get better. So in the end I stopped going to doctors for a long time.. it was pointless just being told "we cant do nothing or suggest nothing" . They simply said it just cant be treated at all and didnt even want to bother trying.

    Since ive found out that there are many supplements which "may" help (it being a hit or miss thing), its been a much better situation for me as I know I can find things which will help some if I keep looking. (I had another breakthrou in that area this year and found a supplement which is helping several of my symptoms, last year I found 2 things which helped). Knowing there are things out there which may help.. gives me hope.

    Sounds thou like right now you need a break from trialing things (let your doctor clearly knew that so he wont keep offering things) but sooner or later you probably will be wanting to trial things again and have that slim chance that something could improve you. (When i was trying things, trying to help myself.. I had to have a break from trialing things for a few years).

    One thing I do thou is only trial things which have "strong indications" that they may actually help me (re usually after my test abnormalities showing that they maybe could help), I dont just go trialing "anything" without a very good reason to trial it as I dont want to be wasting money and risking my health for probably nothing.. Those health decisions need to be weighed up well. I dont go just by what a dr suggests as its my body and any consequences due to these decisions, it will be me and not the dr having to deal with them

    Sorry to hear that your allergy shots started possibly giving you issues.
    Tammy likes this.
  3. Misfit Toy

    Misfit Toy Senior Member

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    Tania, I agree with you on some points. What else is he supposed to do, but I also think it's a business. My apartment is filled with supplements and they work for you, but not for me. For years I poo pooed Western Medicine but truth be told, I do better with medicines than supplements. Diflucan helps, Valtrex helps, antibiotics help. Olive Leaf Extract does not, calcium does not, probiotics have never done anything. Medicine helps me more than supplements.

    What you hear with me is frustration. You are right that I may not be able to handle the shot anymore, but I am not sure I could go back to my previous state prior to the shot. That is where anxiety comes in because I would rather be dead. I wasn't living. I was suffering entirely too much.

    As far as trailing or trialing things, since for 24 years I have been sick and no supplement has worked, I can honestly say, I want to try nothing. These supplements are panacea's, they don't address what we have. The origin of the condition and they never work for that long. Chinese medicine has worked,but it's so freaking expensive. $170 per visit with the herbs. It's outrageous.
  4. dannybex

    dannybex Senior Member

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    The antibiotics could be POSSIBLY worsening your leaky gut. ???

    I'd seriously try and get a new doctor. Not sure why you keep seeing the guy for 13 years if he's been so bad.

    I haven't been on a 'vacation' in 14 years...would be nice...but I doubt it would help, as it's like trying to live a normal life, when we can't. What we need is long-term real rest, and that can only happen when certain things (different in everyone) are healed.

    Hope you can find something to help your leaky gut.
  5. Misfit Toy

    Misfit Toy Senior Member

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    Danny, I am not on antibiotics. I am just saying when something is up, they do work. As far as a new doctor. There is no one new or good to see who treats CFS in my area. I would have to go to NYC and I am too unwell for that trip. The guy I go to was once good, he isn't anymore because so many go to him. He is overwhelmed with new patients. Years ago, he called you back, gave you time, etc. That no longer exists. If he does ever do a call to your home, you are charged $20. Never used to be like that. So, I, like so many...am in a rock in a hard place.
  6. flutter

    flutter

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    Spitfire I know and understand what you are going through and the frustration you feel. I've been through and continue through it daily. I've been bedridden and had every part of my body shut down and have a severe leaky gut as well. Have you looked at doing the Paleo diet or SCD diet - they can help with leaky gut. Are you eating grains, seeds, fruits, flour products, beans, dairy or sugars? These can severely aggravate the gut. Flower essences might be worth looking into to help with your energy. I suggest taking L-Theanine for stress at night. Wishing you well.
    The Spitfire likes this.
  7. taniaaust1

    taniaaust1 Senior Member

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    Doctors are businesses too. Its a job for the doctor, sure many got into it as they want to help people, but the truth is its also a well paid job.

    Sad that you've tried things for 24 years. In that time you've probably then tried more then I have. (it was genetic polymorphism testing and testing for trace mineral deficencies which helped me find supplements which worked (minerals and vitamins.. not common ones). I suppose you went the genetic testing and hair analyses route without luck :(

    I had no luck at all with herbal meds .. olive leaf extract doesnt help me either except when I had Staph with the ME, it got rid of my staph and strep .. I took it with an antibotic too but unfortunately didnt change my ME symptoms). I was at naturopathy college when I got this illness so trialed a ton of herbal meds in the first year without any success and have tired herbal meds on and off ever since. I was surrounded with experienced Naturopaths at collage getting worst and worst, until after a year I was too sick to go any more.

    Calicum only works on my PMS or rather PMDD stuff (and nothing else). Vit C only works on my morning nasal stuffiness allergy kind of symptom... both issues I had before I got ME (thou the PMS changed to PMDD with the ME). I was thinking that maybe I made it sound easy finding supplements for myself and want to make it clear it certainly wasnt the case. I probably trialed 30 things at first before I hit something that helped a little with 1 symptom. For me something which only helps 10% for one symptom I find worth it as at least it is a step in the right direction if only a small direction.

    Like yourself..Ive had far better success in pharma drugs (currently Im prescripted 6 perscription drugs for the ME stuff.. from prescription anti nausea drug to drugs for my autonomic system issues etc etc). Unfortunately none of those prescription drugs treats the underlaying cause there (but hopefully some of the supplements for my deficiencies or polymorphism do). Ive tried tons of pharma drugs too which didnt do a thing.

    I do understand the frustration of finding anything which helps.

    When do you get to go back to the doctor and trial your allergy shot again?
  8. Misfit Toy

    Misfit Toy Senior Member

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    Tania, he wants to me try it on March 22nd again. A lower dose. We shall see. This last time was the first time I had such a horrid reaction. I was telling my mom tonight that supplements-what makes me hate them aside from the fact that most don't work, is that you have to buy the whole bottle. For prescriptions, I only order a few pills to see if I can tolerate them. Well, not with supplements, you have to order the whole bottle and you can't return it. Now, I am stuck with this supplement I just bought for leaky gut which was expensive. I have a whole closet full of supplements and then an entire cabinet that I bought for supplements also filled. I want to throw them all out. What really killed me was Oregano oil. Talk about messing up my GI tract. I had burning and wanted to vomit from the burning of that supplement. I had to take Prilosec to take it.

    Flutter, thanks for your post. I have done the Paleo diet. From 1997 until 2009. That's a long time and then in 2009, I completely crashed and became allergic to everything. To air even. I had food allergy testing done and they told me I was allergic to turkey, chicken, pork, beef, salmon....ok, well tell me what to eat. They told me to eat Buffalo and Venison. NOPE. I draw the F--ing line. Sorry. Nope. I was so sick I couldn't even do the rotation diet. Who wants to cook every day and night when they are so sick? IT was crazy. I did it for years and it didn't make me any better. If I drank water I would have an allergic reaction. So, I told him....either we find something else or I can't live like this. I will kill myself. I was at the end of my rope and people around me were worried for me because no one had ever seen my so sick. He had never heard me say that I wanted to end my life. I was always a trooper, but here is where I drew the line. That was when he suggested this shot from Germany/Spain. Like you said, I felt like my organs were shutting down. I wasn't leaving my apartment due to exhaustion and sickness and then I felt mentally like I was going crazy due to pain and inflammation in my gut and brain and body.

    I was spending $$ like no tomorrow going to different doctors and one diagnosed me with lead poisoning. I did chelation and became so sick. A few months later, I had the shot and it was like a miracle. I sprang back to life. I ate ice cream for the first time in about 10 years. I was laughing and happy again.

    Anyway, theanine makes me have horrible dreams. Can't take it. I can take L-Serine, but can't find it online without another amino acid with it.
    taniaaust1 likes this.
  9. jeffrez

    jeffrez Senior Member

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    I became allergic to all food at one point, also. I couldn't eat a bite of anything without going into anaphylactic shock. I didn't eat for a little over two weeks, lost over 50lbs. and pretty much almost died.

    For me, a round of steroids actually worked. It calmed down the immune reaction to the point where I could at least eat a few foods. After introducing some foods too fast, I crashed again and had to start over, but from then on I just stuck to the few foods I knew I could eat and introduced new ones only very slowly, only after a looong time. And some I just never added back again because I didn't want to risk it.

    I'm sure I have a leaky gut, too. I had when I was first seeing a bunch of alternative docs after I first got sick, and I can't imagine it's totally healed now. I have taken a lot of NT factor and glutamine since then, so maybe that's helped a little. But what I'm saying is that although I don't know the source of your problems obviously, or what kind of reaction you're getting, if it *is* based on immune reaction to food particles leaking through the gut, perhaps medrol would help in that case, too.

    I just took some diflucan a few weeks ago for the first time ever, and I really started feeling much better on it. Otoh, I've been taking olive leaf for the past couple of months at pretty good doses 3x a day with no discernible benefit. Oregano oil also messed up my gut, took weeks or even months to fix it. So I can really relate to this feeling of frustration with supplements herbs. Pau d'arco is the only herb I've taken that has given some benefit against fungus, and it's still a bit weaker even than diflucan. In combination with other AFs or even just brewed strongly it might be worth a try to see if it at least gives some relief.

    I really think some of our cases are too extreme for just herbs, though. This is hardcore stuff, and it's no shame to need pharmaceuticals at times, imo. If the antifungals work for you and your liver can handle it, maybe it wouldn't be a bad idea to at least start there, try to get a foothold. Try to get some sporanox even, or whatever your system can handle. If you can beat back the fungus long enough to let your gut heal even a little, that in itself could make a big difference. Sometimes you just have to start wherever you can and go one step at a time.
  10. Misfit Toy

    Misfit Toy Senior Member

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    Hey Jeffrez, I can't take Medrol at all. It makes me psycho. Up all night, pacing. I was told that I am not a candidate for steroids since I do horrible on them. I want to look into different treatments, including glutamine. I think our bodies are this way because of a much bigger picture. It's not just yeast, viruses, etc. You can kill yeast, viruses, give yourself antibiotics for organisms or something for a parasite, but if you have a messed up immune system due to a faulty brain...what to do? Faulty brain meaning...HPA axis issues. When things went bonkers for me with food is when my hormones shifted and I went into perimenopause. so, there is a hormonal correlation and the lack of hormones tanked my adrenals which made my food allergies nuts.

    But I agree, oregano was no good and is no good and sometimes it's the heavy arsenal of meds that works. Not transfer factor and all of the other stuff recommended that takes forever to work if it works at all.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

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    Why do you not want to treat your genetic methylation dysfunction?

    I did not know that it was possible to get just a few pills of a prescription, instead of the whole amount. That is good to know.
  12. jeffrez

    jeffrez Senior Member

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    Apologies, Spitfire. After you wrote that I remembered you had said before that you don't tolerate steroids. I was just about to go to bed when I made that response, so I was kind of half fogged and out of it, lol.

    Messed up immune system due to a faulty brain is a tough one. ;-) All I can say on that score is that after improper steroid taper crashed me with ME/CFS, EEG neurofeedback one time gave me complete, though unfortunately only temporary, remission. I've been fighting ever since to try to duplicate that effect, with only varying degrees of success, but I still believe it is possible. I can clearly see the brain abnormalities that are existing and presumably keeping the CFS locked in, or contributing to it at least, but actually fixing them is not so easy in practice. But if you could find a practitioner who could evaluate and possibly treat you, some real improvements might be possible. Can't guarantee anything, of course, but imho it's worth looking into. The brain and immune system are so intricately linked that it's virtually impossible to change one without affecting the other.

    Also, have you tried any meditation? A simple mindfulness meditation might help, though it takes practice and discipline. I really need to start doing that more myself. When I used to meditate daily it really helped calm down the hyperarousal, and I think it made a difference in immune functioning. Allergies were definitely improved. It's sometimes tough to find the discipline to stick with it, especially when the rewards are not always immediate, but let's face it: for many of us the HPAA is screwed up, and meditation practices are known to directly affect the HPAA. So no pun intended, but it's not brain surgery to see it that in some cases it could help. ;-) GL
  13. Misfit Toy

    Misfit Toy Senior Member

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    Bluestorm, I am scared to do the methylation supplements. First of all, I look on the boards here and I feel like you have to be a rocket scientist to understand it. The copper to zinc ratio. The this to that. I mean, my God....I seriously just don't have the brain power to understand what so many clearly do on here regarding methylation.

    Also, back in 2007, I tried it....big time. I was told to take one Folinic Acid pill a day and B12 and all of it and I did and after a few months, I felt awful. Like my body was so inflammed and I couldn't sleep. I was having migraines in teh back of my head and my Fibromyalgia went nuts. My doctor took me off of that protocol and within a few days, my whole body calmed down. He said that it was too much for me. Then, in 2009-he said that the dosage was completely wrong and that people now need to take this stuff in like crumb increments. Well, I was scared to do it because my body had crashed and I was better in 2007 as opposed to 2009.

    Jeff, what is EEG therapy?

    Also, bluestorm....you can ask for as many pills as you want to have filled prescription wise. Instead of 30 pills, you can order 3. Saves me a lot of money instead of getting it filled and finding out I can't take it.
  14. taniaaust1

    taniaaust1 Senior Member

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    Maybe look at doing what some others and I do.. Ive given away many supplements to others over the years which I brought but then found I couldnt take.. others have also given me things to trial.. Ive been glad of that as the 3 times others have given me supplements to trial posting me just enough to trial (ones which worked for them), but they didnt work for me (Ive tried two different types of B2s like that and electrolite solutions for POTS etc thou others posting stuff to me). At least it isnt so disheartening if you havent paid for it when it dont work.
  15. Misfit Toy

    Misfit Toy Senior Member

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    Tania, if you look on past posts of mine, I have tried to do that. I did send a a few supplements to others on here, but only one was interested. I am not sure if they are scared. I have so many supplements. I paid for shipping, too. I can't find people with CFS in my area, so I have no one around here to give them to. I started a CFS group back in 2012, which ran for 5 months, but only one with CFS showed and she doesn't take supplements.

    If anyone wants some supplements, let me know. I do ask that the person pays for shipping, but I am more than wiling to get rid of them and have others try them for free.
    taniaaust1 likes this.
  16. taniaaust1

    taniaaust1 Senior Member

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    :( sorry that hasnt worked out for you.

    I kind of wish some ME/CFS org would put together ME/CFS sample packs of various supplements so we could at least test a lot of different things even if it was just to find out if we are capable to tollerating certain ones before going the whole way and buying whole bottles. (maybe there would be a market for mixed CFS supplements sample packs).
    The Spitfire likes this.
  17. Misfit Toy

    Misfit Toy Senior Member

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    Tania, my chiropractor does that. I suppose doc's would be fined for doing that, but she does it because she is nice enough and smart enough to realize that not everyone can tolerate or afford a $60 supplement. It's so great for us patients to have that option.

    BTW, I have been reading your threads on here, and I just want to say how sorry I am about the home health care aides. You have been through a lot, my friend and I hope your boyfriend is treating you better. I hope you are able to have some distance from him where he isn't wanting sex with you on such bad days. I have kept up with you on here when I can and I worry about you. I know I am not on here all of the time, but you are one person I want to know how it's going.
  18. jeffrez

    jeffrez Senior Member

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    Neurofeedback, a biofeedback practice for the brain. You train your brainwaves to be more efficient and operate more optimally, and correct brainwave imbalances.

    Here's a FAQ:
    http://www.eeginfo.com/what-is-neurofeedback.htm
  19. Tammy

    Tammy Senior Member

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    Spitfire.........in one of your posts you mentioned not wanting to try anything..........I've been thinking about that same thing for a few months now. I looked inside several of my kitchen cabinets the other day and just stared at all the supplements sitting there on the shelves.......theres probably at least 40 different supplements..........taken over the years.........some even unopened. I thought of all the money I had spent and sadly to no avail.........there may be one or two that I think helps.........but in the big picture ...........well I think you know what I mean. I really don't know why I havn't ever just stopped everything to see what happens.....perhaps that survival mode takes over........but my instincts say I probably won't see much of a difference. Not trying to be a debby downer..........but I wonder how many of us...........have just stopped taking meds/supps for awhile...........and did it really make a difference?
    The Spitfire likes this.
  20. taniaaust1

    taniaaust1 Senior Member

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    Thanks Spitfire. I dont see my boyfriend often.. just a couple of times a week for a short time. I need his help so wish he could be here more. He's had sexual pressure off of me as Ive been collapsing so much (and he's being better of late in that way too). Last time he was here my ME was so bad that it was too much effort just to raise a glass to my mouth (I then I went into bad shaking..(I got such a reaction from the effort of just trying to swallow, he thought I was choking) and almost had a seizure when he tried to give me my water so was unable to drink anyway till I slept a while..

    I'll keep trying to fight the system to get more home support then I do now but the big issue is.. Im not well enough to fight the system so are hardly even putting in complaints. I really need someone else doing this for me and helping me get the help I need. Im not good at following up things due to this illness.

    anyway.. dont want to talk about me on your thread. I hope things sort out for you.

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