ER 3 Times in one week BP Drops, losing control.. help

Discussion in 'Fibromyalgia Main Forum' started by Wolverine, Sep 9, 2008.

  1. Wolverine

    Wolverine Member

    Hi all. As many know here i have CFS/FM/MCS, etc. I generally don't do well with low energy, brain fog, muscle pain etc, and having to rest alot between activities. i can usually cook food, do a very small amount of cleaning, or drive to the shops to get a few items.

    However, on August 20th, something changed dramatically. I awoke feeling extremely unwell. Not sure what's wrong exactly, but I woke up on that Wednesday shaking, feeling much weaker & heavier than usual etc.

    All day my BP was dropping, having unstable hypoglycemia, and I was dreadfully cold to the core. Kept on the same despite lots of water and salt etc, until about 6pm when I lost control of my body when simply getting up to get a drink.

    I dropped to the bed so as not to faint, and began shaking violently and was so incredibly weak and out of control. Heart rate was around 140-150, but a very weak pulse. I had a bad tight aching band type pain across the top of my chest from shoulder to shoulder and down the inner left arm. I felt like my circulatory system was going to collapse inside me. I was so extremely cold.

    Called ambulance when I was able and they came - had settled slightly but still very weak and shaky. Postural BP drop of 20 or 25 points on standing (80 systolic) - They took me to the ER where they game me IV saline over an hour or so. Helped BP but still felt unwell.

    Every day has been similar since that wednesday and was taken in ambulance again on the following sat nite, then again the next Wednesday - both times another 1 or 2 litres saline - general blood tests all coming back 'in the normal range'.

    I kept hoping I’d get back to my usual self, but it’s since been staying the same if not getting worse all the time. I went to the GP but he couldn't do anything much in the short term.

    I'm rather scared as even though I have CFS, I never feel this bad. I haven’t been able to cook any food or even shower more than once a week or so, the energy from my body is gone.

    I feel like my body is about to bottom out almost all day, and it wakes me through the night, dreadful shaking and freezing cold to the core. Weakness, dizziness, low BP and postural drops, severe tremors/inward trembling, 'jelly legs' on standing, dihorrea and polyuria, unstable hypoglycemia (all alot worse than usual), anxiety, weak appetite, dim vision.

    I can barely lift myself off the bed, and can’t do basic things i usually can. I really feel like i need to be admitted to hospital for a few days for comprehensive tests, as I am really scared and never feel this bad / unstable, but the hospitals are overcrowded and my tests are 'normal' (infuriating).

    I’m constantly feeling on the edge (it comes in waves through the day / night) on and off like I may have to go back to emergency at any time, and I really don't want to have to keep doing that because they aren't really experienced with these sort of problems or my history. I’m using 2x and 3x the amount of testosterone gel just to stop the freezing shaking coldness/weakness that I constantly have, which does help a little but for a short while. I recently discovered that I had to up my licorice root intake (from one teaspoon a day) to about six to TEN TEASPOONS a day to keep me out of hospital! That is a huge dose of licorice as far as I know - reccommended is like 500mg to maybe 2grams max, im now on around 10-15 grams a day (which retains cortisol longer).

    I still haven't started taking cortisol except a tiny crumb of a tablet here and there, which gives me a short burst of miraculous stability and reverses the cold, weak shakiness, nearly all the symptoms for a short time. It’s just that it's the last thing I want to depend on, but I feel dangerously unstable every day since Aug 20th.. any ideas would be really appreciated.. thanks.

    ~Chris.
  2. Waynesrhythm

    Waynesrhythm Member

    Hi Chris,

    As I read your post, I kept thinking of Addison's disease or severe adrenal insufficiency. I'm not sure I can add anything regarding supplemental corisol that I haven't mentioned in the past on your threads. I at least wanted to touch base with you, and wish you the best as you try to regain some semblence of stability.

    As you know, I've been supplementing with cortisol (Cortef) for over ten years now. I normally take 15-20 mg/day, but am getting ready for a lengthy trip and doing a fair amount of packing and organizing. I just upped my dosage to 25-30 mg/day and will stay there until I am not pushing myself as much.

    Because of my lengthy experience with supplemental cortisol, I just don't have concerns about being dependent on it. If I was to look at it as a dependency, I would consider it be similar to healthy people who are dependent on cortisol as well, except their adrenal glands are able to make anough of it. Mine can't.

    I occasionally get what I call minor spells, with some of the similarities you describe. I think it's just part of the adrenal insufficiency syndrome.

    Wishing you the best.

    Regards, Wayne
    [This Message was Edited on 09/09/2008]
  3. gapsych

    gapsych New Member

    Do you have a PCP you can see. I am extremely worried about your symptoms. I would not play with the dosage of licorice. You could be getting a reaction from that.

    THis may be causing your body to feel "shocky" and you could be getting a rebound effect if something is going on with your adrenals and you are taking too much licorice root. Just because it is natural does not make it safe at such large amounts. What is the testosterone gel for? Was this prescribed by a doctor.

    Did they check you potasium? Licorice root can make it drop. If they give you this test it should be done before you get the IV. I know this is what they would do to me when my sodium was low. If you potassium is low I believe the IV will make you feel better.

    According to what I read, you should not be taking the licorice root for more than four weeks in large amounts.

    I am not a doctor but it sounds like you need one who can give you sustained care.

    Do you have anyone with you?

    Let us know how you are doing.

    Take care.

    GA
    [This Message was Edited on 09/09/2008]
  4. Rrrr

    Rrrr Member

    chris,

    how horrible! i have certainly felt that way before, but never for so many days in a row, as you are experiencing.

    what supplements are you on? is one of them making you sick or detox too fast?

    do you have a doctor you can go to? call sooner rather than later? this would spark me to make an emergency call to my doc.

    now i'm not a doctor, so have no medical experience or advice for you, but this is what *i* would do to stop this type of near-death relapse...

    1. up my salt intake to 3-5 grams per day (take salt tablets, not just sprinkles, with bread or pasta or rice or anything to absorb the salt)

    2. up my water intake to 3-4 liters.

    (these two will raise yr blood volume and blood pressure. that is the goal. but be very sure to check your blood pressure often, so that you don't get too high. licorice root will increase the blood volume too, so you will likely have to drop down on the licorice root.)

    3. stop all supplements that promote detox (b-12, glutathione and countless other things)

    4. take things that helps absorb toxins and help you get the toxins out, in case it is a toxic assault that is making you sicker or in case you are detoxing too fast.

    - again, drink water, to pee out the toxins
    - try to have a few bowl movements per day (take more Vit C and magnesium citrate).
    - take charcoal to absorb toxins (take 2 hrs away from all food and supplements on both ends, before and after you take the charcoal) (follow it with taking magnesium citrate, to promote a bowel movement).
    - get some Sarsaparilla drops (this is an herb tincture you can buy from any good health food store). take a few drops each hour for a few hours and see if it helps (i take only 5-6 drops, but others take 30 or more). i have no idea why this helps, but it does. someone else likely knows why it helps..?

    those are just thoughts off the top of my head.

    and i'd call my doc -- and ask a few friends or family to come over?

    take good care,
    rivka


  5. Rrrr

    Rrrr Member

    chris,

    how horrible! i have certainly felt that way before, but never for so many days in a row, as you are experiencing.

    what supplements are you on? is one of them making you sick or detox too fast?

    do you have a doctor you can go to? call sooner rather than later? this would spark me to make an emergency call to my doc.

    now i'm not a doctor, so have no medical experience or advice for you, but this is what *i* would do to stop this type of near-death relapse...

    1. up my salt intake to 3-5 grams per day (take salt tablets, not just sprinkles, with bread or pasta or rice or anything to absorb the salt)

    2. up my water intake to 3-4 liters.

    (these two will raise yr blood volume and blood pressure. that is the goal. but be very sure to check your blood pressure often, so that you don't get too high. licorice root will increase the blood volume too, so you will likely have to drop down on the licorice root.)

    3. stop all supplements that promote detox (b-12, glutathione and countless other things)

    4. take things that helps absorb toxins and help you get the toxins out, in case it is a toxic assault that is making you sicker or in case you are detoxing too fast.

    - again, drink water, to pee out the toxins
    - try to have a few bowl movements per day (take more Vit C and magnesium citrate).
    - take charcoal to absorb toxins (take 2 hrs away from all food and supplements on both ends, before and after you take the charcoal) (follow it with taking magnesium citrate, to promote a bowel movement).
    - get some Sarsaparilla drops (this is an herb tincture you can buy from any good health food store). take a few drops each hour for a few hours and see if it helps (i take only 5-6 drops, but others take 30 or more). i have no idea why this helps, but it does. someone else likely knows why it helps..?

    those are just thoughts off the top of my head.

    and i'd call my doc -- and ask a few friends or family to come over?

    take good care,
    rivka


  6. hensue

    hensue New Member

    That sounds pretty potent, why are you on such a high dosage. I was told licorice was pretty dangerous supplement.
    could it be interfering with other meds.
    You need a doctor that will help maybe an integrative doc.
    That knows meds and supplements.
    Even in our small town we have a doc. Who was a surgeon and now has neuropathy. So he has been an integrative doc.
    For quite some time. He helped me build my white blood cells back up.
    So i would not stay sick all the time.
    You sound pretty bad. Are you to sick to seek help? Do you have someone with you?
    Chris you are in our prayers
    Take care
    hensue
  7. Wolverine

    Wolverine Member

    Thanks all for the quick replies - very appreciated.


    Jeerie: GP's don't have alot of say over hospital situations etc unless they can prove there is an absolute situation that shows up on tests etc. I know that sort of thing happens like with ur husband, sorry to hear that. My entire problem started 8 years ago with the same thing - severe upper abdominal pain with no diagnosis. It took me over a year of hell before they took my gallbladder out however. Also I don't want to go to ER any more than I have to, as they are such young Dr's there and inexperienced. I've told them the urgency of my situation in there and they still don't put me in or investigate further, just send me home soon as my blood pressure has stabilized from IV saline. Its so frustrating as I definitely know something major has changed in my body, and it feels dreadful.

    Thanks Wayne, good to hear from you. I know others have also mentioned (and i've suspected) it seems like Addison's or some form of adrenal insufficiency, but I think my blood tests are showing in the normal range. Im not sure how reliable blood tests are for all adrenal problems. If it isn't adrenal, I've no idea whats going on except that i feel close to death during these 'episodes' much too frequently lately.

    Gapsych: Thanks. Im not sure what a PCP is. As for licorice - i don't think that's the case at all. I'd still be in emergency every couple of days i think without the current dose. Ive been getting that weak and 'shocky' feeling i guess u could call it only that first week of multiple ER visits. At that stage i was only one one teaspoon of licorice. THEN after that week i decided to try upping it taking a teaspoon every 1-2 hours. It certainly helps. Sometimes i can feel like im going down and take 2 or 3 spoons of it, and within one hour, the cold shakiness in the chest starts to ease off, i feel my BP coming up a bit, and generally just not so unstable. I feel im requiring it to stay that way. They checked my potassium and apparently it was normal even with all the licorice. (I take alot of celtic sea salt in water which is high in many minerals so maybe this helps). Apparently yes re: licorice and 4 weeks at a time. However, if i stop taking it for 2 days in a row - i wake up extremely heavy and worse than ever, and it's a likely guarantee i'll be back in ER in no time. It NEVER raises my blood pressure too high. 110-120 maximum. If a normal person took as much as I do their BP would skyrocket im sure.

    I take a fair amount of salt - probably 3-4grams a day. I even take a small amount of potassium in case for the licorice.

    I drink about 2litres a day anyway. If i drink too much it begins the polyuria and then i start losing too much water.

    I am usually constipated or generally ok with bowel movements because i regularly take high dose vitamin C (about 4-6 grams a day) and magnesium chelate (have done both for years now). But lately with my episodes my gut seems messed up and i have more dihorrea than anything, its all moving too fast (which i never get!).

    As for having people with me.. I had my dad down for a week last week - it was really great having his help. Usually however - no my family lives about 12+ hours away. I live with my girl and another friend, but they both work full time and I'm here alone weekdays, which isn't fun lately because sometimes i can barely get up to get food or drink, which of course makes things alot worse, as at the moment i am feeling dreadful if i dont eat much more frequently than usual.

    I also did start seeing a new Integrative practitioner today, who suspects DHEA may help me, and is sending for some other (non standard) tests such as hair mineral analysis and saliva hormone testing.

    Thanks again.

    ~Chris.
  8. marti_zavala

    marti_zavala Member

    I think the new doc will be able to help you tremendously.

    Sounds like Addisons or very low thyroid. I would agree with Rivka's suggestions.

    I would suggest Cheney's Sodium/Potassium mixture. If you get these off balance you can feel very badly.

    He suggests 1/8 tsp of sea salt (not table salt) with 1/8 tsp of No Salt (a potassium salt) in 8 oz water. Drink several glasses of this per day.

    I also think you should limit your water intake to eight 8 oz glasses. Sounds like your electrolytes are off balance and diluting them further with large quanitities of water might make it worse.

    Hope you can get some help.
    Marti
  9. gapsych

    gapsych New Member

    I knew there was something I forgot to mention in my post. When my sodium was low, the amount of liquids I could drink was restricted. It was a very small amount and I drink water constantly, so was a bit frustrating

    Good thing you put this piece of info. in. When my sodium was low,I thought it would be just the opposite. However limiting you liquid intake after thinking about it, did make sense.

    How are you?

    GA

    [This Message was Edited on 09/10/2008]
  10. lizritchey

    lizritchey New Member

    I'm so sorry you are feeling so terribly bad. I hope you can find something to help soon.

    When I had my cortisol level checked my Dr. did it with a spit test. The first time I had to spit 3 times in one day. The second time in was once in the morning before I ate or brushed my teeth.

    I am wondering why you are so reluctant to take hydrocortisone? If you take a low dose 10 to 15 mg a day you shouldn't really have a problem with a dependance. It has made a huge difference to me. I took it for about a year, got off it for about a year and I'm on it again becuse I had a flare. I'll only take it for a few weeks this time. My current Dr. suggested I keep it on hand in case of a future flare.

    If you find that you have an adrenal insufficiency, I highly reccommend it.

    God Bless. I'll pray for you.
  11. marti_zavala

    marti_zavala Member

    I am doing as well as can be expected. I crashed getting ready for the last hurricane. We didn't get a drop but at least I am ready.

    I am doing better now that I have been on the sodium/potassium. Less hypotension.

    Marti
  12. findmind

    findmind New Member

    Dr. David Bell described a patient with symptoms such as yours once; she was suffering from severe low blood volume.

    There is a very special test for it; maybe someone here could tell you, I sure can't remember anything except they take some of your blood, add something to it, then exactly 45 min. later, give it back to you, and retest more blood....later?

    Hope someone can tell you more!

    findmind
  13. Catseye

    Catseye Member

    You sound a lot like me in the old days. What are you eating and what supplements are you taking - anything besides licorice and tiny amounts of hydrocortisone? I have a lot to say, but would like to know those first.

    karen
  14. Wolverine

    Wolverine Member

    Thank you for more replies, so much appreciated! Please read after the individual posts at the end - info on my recent blood tests.

    Marti: Yeah hopefully the new Dr will be able to help, I am hopeful. Thanks for that - i may well try taking the sodium/potassium mix more often. I have that 'no salt' type product - think it has 50/50 with sodium and potassium. I also use celtic sea salt which as all the minerals in it. Def limiting the water to 8oz. A few months ago when having this type of attack when out, ended up in ER, and i had drank so much water my potassium level was almost dangerously low.

    Lizritch: Interesting to read your post! Did you have blood tests for cortisol or only saliva? Did the saliva test show it low? I'm actually about to take this test myself too. I am reluctant for a few reasons. I have used it in the past - but I am one extremely sensitive individual. In the past, when i used it, even for a few days, I would feel like DEATH the 2nd day after stopping taking it. Unbelievable, like i could not even lift my arms, legs etc, and my entire body felt like it was burning with inflammation all over. The worst time was after about 5 days on it, at only about 2-5mg a day. It took a week or more to get over that dreadful withdrawal. I can't believe you can take it for a year and then be able to go off it! That's amazing. If i didn't have that horrible withdrawal there would be no question to my taking it regularly for weeks at a time. Also i find low grade infections seem to flare when I take it. So far my blood cortisol is in the normal range.. this may be because of the licorice i take. And thank you very much.

    findmind: That sounds very interesting.. i'll have to look up dr david bell's report - is it online anywhere? It does definitely feel like i have low blood volume. Very interested to find out what that test is.

    Karen:
    I do? Lucky you too! hehe. Funny thing is - this isn't early stage CFS for me. Ive had it 8 years now since my major stress with abdominal pain, weight loss and surgeries in 2000-2003.

    OK 'what suppliments and food' am I using? Well, gluten free diet, meat/fish and veg, rice, etc. Alot of potato chips to try help blood pressure (i know not the healthiest, but helps often, and btw im very underweight despite).

    At the moment i'm eating things i shouldn't i know, but not as bad as when i felt more well! Im having to order food at the moment many nights (chinese, thai, gluten free pizza) because i can't cook at the moment. Or i eat instant dinners (yuck!) - or plain things like rice and plain beans. My appetite is very low and even though i feel like i need so much food frequently, i feel sick when im forcing it down because of the weak appetite. Not the best diet - but i have NO energy to shop and plan a good diet, though i desparately need it.

    Supps: I have been on these supps solidly for a long time. Vit C - 6grams a day or so, magnesium - 500-1000mg a day, calcium - 1200mg a day (with vitD), small amounts of sam-E every few days, but recently much more - about 800mg a day. It usually causes headaches and liver pain with too much, but since late august and these weird crashes, i can tolerate much more and it helps. B complex - same boat as sam-e - it usually causes massive headaches with repeated doses (more than one day), to migraine levels, but lately since this phase, i can and have been tolerating high doses of it (taking in the form of Swisse mens multi, which has lots of stuff in it). It's just one thing helping me stay out of hospital i think. I've no idea why I can tolerate them at the moment - maybe my body is desparate for the help. B12/folate with the sam-e, as usual, no change from that for ages. Haven't introduced anything new to bring this on. Was on glutamine for about 6 months but not for now. No other supps to report really.

    Rx: Testogel (been on it for 8 years), creon (digestive enzymes), Spiriva (for asthma which is mostly allergy related), Valium 1/4 to 1 5mg tab per night depending, Zyrtec (Cetirizine), once a week or less i take zantac (ranitidine) for stomach acid, buscopan for stomach cramps. Bout it really.


    OK. I went to the GP this afternoon, after nearly fainting at a blood test place elsewhere (postural tachycardia of approx 150bpm after getting out of a cab, with dizziness, seeing stars and spots etc). When i gained my feet (as i was alone and had to crouch for about 5 mins), i bought a large sprite and some jellybeans, which helped me out of the episode (not dramatically however).

    He gave me back some recent blood tests including ACTH and Cortisol. It was a morning test and my ACTH was normal, and suprisingly my cortisol was at the mid/higher end of the normal range. Sodium normal, potassium at the lower end of the normal range.

    I suspect it's the high dose of licorice that must keep the cortisol up. However, if this is the case, how can i be so faint so often?? And how the hell does such small doses of cortisol help me so much? I really don't get it.

    Sorry this is long, and i really appreciate all you guys help. Thanks so much.. ~Chris.
    [This Message was Edited on 09/11/2008]
  15. Wolverine

    Wolverine Member

  16. Catseye

    Catseye Member

    It basically sounds like you're starving to death because digestion isn't working and you aren't eating as healthy as you could - but the latter doesn't really matter since digestion is all messed up anyway.

    I'm not exactly sure why eating carbs was perpetuating my hypoglycemia, but it didn't take too long to get over it. Of course, I had help and tests showing what was wrong. I was eating lots of rice and beans, and it turned out I shouldn't have been eating them at all. I only eat chicken, eggs, beef, fish, veggies (but no root veggies) and raw nuts now. And my hypoglycemia has disappeared. I had it for 5 years and it was so bad 8 months ago, I had to eat in the middle of the night. I think what's happening is that when digestion doesn't work right, you can absorb the calories and sugar from food, but not the nutrients. So when you eat lots of carbs, you are just spiking your insulin and stressing your body because you aren't getting any nutrition. You might as well be eating candy bars all day long.

    You should try to avoid carbs and eat more chicken. You can buy chickens already cooked in the delis of big grocery stores. Just buy a whole chicken, and then you can pick at it for a couple of days - then get another one. You can also get cooked veggies at the deli. The steamed or roasted are your best bets.

    I see you are using digestive enzymes. I was, too, for a couple of years. But they don't do much good if you don't have enough stomach acid. Things really turned around when I started using betaine hcl in large enough doses for what I needed. I see you take zantac for stomach acid. Is it for heartburn? Doctors think any stomach discomfort or GERD is too much acid and want to give acid reducers. I think my usage of prilosec is one of the reasons I got so sick and digestion stopped working. When you don't have enough acid in your stomach, it can mimic heartburn, for one thing. The food is irritating your stomach, which can cause a burning feeling, too. Since you have CFS, it's more likely you have too little stomach acid.

    One thing I found out from the stool test is that I wasn't digesting fats and proteins properly. When you have had CFS for a long time, you get so deficient in nutrients, that your body can't make the chemicals it needs. Let's take zinc for example. You need zinc to make stomach acid. But you also need stomach acid to absorb zinc from your food AND you need acid to digest fats and proteins. Your body need proteins for repairs and fats to make hormones. If they aren't broken down properly first in the stomach by the acid, then the digestive enzymes you take aren't going to help because they need to have been partially broken down by the acid, first.

    You end up with a lot of partially digested food in your intestines which your body can't use and it ends up congesting your liver, too. Now you've gotten in a vicious cycle of not being able to digest anything, and not being able to fix digestion, either. At least, not without help. You probably need betaine hcl with fat and protein meals and THEN digestive enzymes afterwards. The betaine hcl made an enormous difference in the way I was able to digest my food. And you can't really tell if it's not digesting, only that you are so weak because even though you are eating, you are just starving yourself to death because digestion is "broken". Do not expect a regular doctor to be able to diagnose this problem, much less help you with it.

    I treated myself for a long time, but here were my mistakes regarding just digestion:

    I took one betaine hcl pill (700mg) with meals, but now I'm taking three - big difference.

    I was taking digestive enzymes, but they were useless with enough betaine hcl.

    note: betaine hcl is different from betaine - betaine hcl is a beet derived form of acid that the stomach uses and betaine is aka TMG trimethylglycine, an amino acid,it's good for things, too, like lowering homocysteine levels, but will not help you break down fats and proteins in your stomach

    I took tons of probiotics. But I was eating too many carbs which were feeding all the bad bacteria and yeast in my guts. There weren't enough of the good bacteria, which you need to make certain vitamins and enzymes which you need. So the expensive probiotics I took for a year, Garden of Life, were all sacrificed to the "bad guys" because the bad bacteria eat the good bacteria. They keep each other in check. Sorry guys!

    I ate too many carbs. It perpetuated my hypoglycemia. The fact that my digestive disease specialist medical doctor couldn't figure this out perlexes me. What did that fool learn in school besides how to sell drugs? Obviously, nothing.

    I was taking liver support pills, but because I wasn't taking the right things to digest my food, the liver was constantly being congested with undigested food particles AND not receiving all the nutrients it needs to be able to detoxify things properly. So if you're taking any drugs, they need to be detoxified and you're stressing the liver and kidneys.

    I was eating lots of veggies, but I was eating lots of ROOT veggies, along with brown rice and beans, thinking they were all healthy, and which are all high carb and just perpetuating the insulin spikes and resulting hypoglycemia.

    For what I've done about digestion, see my thread "toxic guts, toxic body, why do a comprehensive stool analysis". I've found a health expert who can order the proper tests and make the proper diet and supplement recommendations depending on what exactly is happening in a particular person. That's what you need.

    If you're taking allergy meds, you are probably in the same boat as me with allergies. Are you eating dairy products? If you are, quit them immediately. You can google for "casein allergies" and see what comes up. It's not that we're allergic to casein (milk protein) it's that casein causes antibodies to be produced because it's a particularly hard protein to break down and so the immune system looks at it as a foreign invader rather than a food particle. And when digestion isn't working, the problem is 1000 times worse.

    What it does is it makes the immune system hypersensitive to other allergens, like cats and pollen, and you have hay fever and sinus misery. It can take up to 3 months to get it all out of your system, but you can't fix CFS and eat dairy at the same time. It also congests your liver. That means no cheese, milk, yogurt, or anything with any milk protein in it. In certain circumstances, some whey proteins can be used but you should only do so if you're sure. It can keep you sick, dairy is evil to a person with CFS. I would google for "asthma natural remedies" for more info on food related issues. You won't get that from a medical doctor. That's why you include natural remedies in with the search so you can find out the diet and supplements that would help.

    I see buscopan, too. So the doctors are filling you full of all this crappy medicine when what you really probably need is just some betaine hcl and a diet change. I also took high doses of zinc with the betaine hcl and I think my stomach is finally filling up with some acid of its own. I've been on this diet and treatment plan for 6 months so far.

    I think you would get enormous results if you would go after digestion. If you can afford to use Dr. Farr at becomehealthynow, he's great and uses tests to base his recommendations on, no guesswork. If you can't, then I would try getting some betaine hcl and zinc and start taking it with every meal. I tried two betaine hcl pills (700mg) with meals and then tried 3 and with bigger meals, even 4. If it burn, then cut back. But I'll bet you are just fainting because you are starving for nutrients because you can't digest your food. Cortisol will help in the short run, but your body is missing too many things.

    Have you tried the mitochondria fuels? Also see this thread I did:

    Mitochondria's role in PEM (crash) and how you can reduce it

    I think you probably also should get some folate, pantethine and coq10. These are pretty important things. And what about amino acids? Ever try any?

    best wishes

    karen

    more after you've digested this!

  17. Catseye

    Catseye Member

  18. Catseye

    Catseye Member

    I know you're having a problem cooking, but if you can get someone to do this for you, you could save them in the fridge for a few days and eat off them, just make a huge pot at one time:

    Eat tons of veggies. The best way to do this is to get a bunch of them like broccoli, bell peppers (all colors), onions, garlic, zucchini, squash, cauliflower, celery, etc. but leave out the root vegetables like carrots and potatoes. Cut them all up very small and boil them in chicken broth without msg. Make a huge pot of them and eat off of it several times a day. The trick to veggies tasting good is to have a lot of different ones in every bite you take. Then they taste good! Especially with the chicken broth. Come on, chicken broth could even make a turd delectable if you boiled it long enough. One veggie by itself doesn't taste that good, but with the peppers, onions and garlic, they'll all taste good. The more you get in one mouthful, the better the taste.

  19. Catseye

    Catseye Member

    Are you taking any mineral pills? The best ones I found are Krebs Cycle Chelates, they are chelated with amino acids for maximum absorption and they really helped my heart symptoms enormously. They're by Enzymatic Therapy, Teitelbaum's brand
  20. suz9601

    suz9601 Member

    Wolverine

    Sorry to hear about how you are doing> I just wanted to mention that I have a lot of your symptoms such as the near fainting, POTS, diarrhea, frequent urination,freezing cold,shaking etc and I think it is from my autonomic nervous system going crazy. I also have many more symptoms such as irregular heartbeats etc. I have had cfs for 12 years and these ANS type symptoms for 6 now. I have been to so many docs w/o much help but had to finally go on a beta blocker for the heartrate/rhythm..which was a struggle due to the low bp..Anyway, just an idea of maybe it is the ANS. Not sure why it would get so bad like that but mine started one day out of the blue as well...I hope things improve soon. TAke care