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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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Acute G.I. episodes

Discussion in 'Gastrointestinal and Urinary' started by Dainty, Jul 14, 2011.

  1. Dainty

    Dainty Senior Member

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    I don't know how many times I've begun to make a post about this symptom, only to change my mind. Though I've had CCC ME/CFS for 5 years and a milder case for a few years longer, I'm quite certain this symptom is not part of ME/CFS. Plus it's a gross one to read about - consider yourself warned. But it's a very serious (potentially life-threatening) issue and so far no one can figure it out so I'm asking for help from you all to solve this mystery.

    In a nutshell, the symptom is acute onset of severe abdominal pain and uncontrolled vomiting and diarhhea. And by that I mean zero control over bowels - vomiting every minute or two and the diahhrea pouring out of me every time I heave. I didn't think it was possible to lose so much. I'm unable to sit up, much less stand as I'm just lying on the floor screaming my head off. I end up literally covered head to toe in vomit and feces. The most critical thing is to replace fluids and electrolytes during this time, and if I don't get it within a couple minutes of onset I begin passing out. I tend to have about 30 seconds of warning between the time I realize it's happening and the time I'm completely helpless on the floor. Once I reach that point I am incapable of doing anything, including getting fluids for myself.

    The longest this symptom has ever lasted is an hour, after which I am perfectly fine aside from being completely exhausted and wanting to eat gently or not at all for a while to give my bowels a chance to recover. It happens about 2-3 times a year with a few months between episodes and is progressively worse each time. The last time it happened I was passing undigested food by the end of it.

    For most gastrointestinal problems the first place you look is a person's diet and whatever other medications or supplements that person is taking orally. That's the problem - no such culprit can be pinpointed. I eat a grand total of 5 different foods - beef, potatoes, pecan butter, honey, and coconut oil - and each one has specifics on how it's prepared, cooked, processed, the source we get it from, etc. I occasionally try a few bites of a different food....this symptom has never occurred in correspondence with that.

    And it isn't a problem with a certain batch of food or food poisoning, as we once suspected. I've eaten the same batch of food, the same jar, even leftovers from what I ate right before an episode and had zero problems.

    As far as oral medications and supplements go, at one point I cut them all out to see if that would cause these episodes to stop. It did not. Also, in the years this symptom has been occurring I have completely changed my oral supplements and medications, so that I am currently not taking any that I was taking before, yet this symptom has continued its steady, predictable, progressive path.

    What do you do with a GI symptom that can't be traced to anything you put into your mouth?!

    I've had stool tests done twice in the past 5 years without showing anything significant, and am getting ready to do them again. My doctor's only guess at this time is a parasite issue, so that's loosely what we're assuming for now.

    I first noticed the symptom a few years ago, but since it only lasted a few minutes and was just some vomiting and diarrhea at the same time along with brief but horrible pain I shrugged it off as a fluke or a bug or a food issue - certainly nothing to worry about. After a few times (that would be over the course of a year or more) I began to realize that this kind of thing had happened before, and took note of the circumstances surrounding it. When it continued I eventually mentioned it to my caretaker, cut out oral supplements in case one of them was causing the issue, but as it kept happening and became worse I began to require my caretaker to nurse me through the episodes. The first time she saw it she had the same thought that I did at first, that it was some sort of fluke that shouldn't happen again - and yet, it keeps happening! It's easy enough to forget inbetween episodes because it happens so rarely, and I don't have any other GI problems otherwise. But then it hits again...

    We have tried charcoal (activated carbon) during these episodes, which should help if it is some issue of poisoning. One time we thought it had made a difference, but multiple times since then has shown no change and we now no longer use it.

    So far every time it happens I've eaten within the past 10 minutes or so. It is not tied to a specific food...I'm always eating beef and potatoes together or pecan butter and honey together, and the symptom can happen directly after eating one without having the other in a while, or vice versa. No connection there that I can see. Part of that might be due to the fact that I often mistake mild nausea for hunger and will instinctively eat whenever something feels indiscernably "off" with my stomach.

    My caretaker and I are agreed that if she's more than 5 minutes away when this symptom happens next then it's time to call an ambulance, since once I'm in that position I can't get fluids for myself no matter how much my life depends on it. We might end up calling one next time even if she is with me, because I lose fluids awfully fast and the pain is beyond excruciating, and each time it hits harder and lasts longer. My doctor agrees that it is a very serious situation and we are doing more tests. I just wish I had a clue as to how to stop it.

    Any ideas?
     
  2. illsince1977

    illsince1977 A shadow of my former self

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    I don't know if this will (or indeed how this could be of any) help, but I know someone with a history of severe food allergies who has an approximately 10 minute delay in onset, too. For him it's severe stomach/gut pain followed by projectile vomiting, or throat closing swelling. Different foods provoked different reactions, and he has no explanation for that difference. This person does not have CFS and is not as restricted in his food choices as you, so avoidance works for him. Obviously you have exhaustively explored and examined your options and the causes/associations, and really don't have the leeway to eliminate anything, nor can you even make an association. So, like I said, I'm not sure I am being at all helpful in posting this.

    I just hope my comments may provoke further discussion.

    This is, indeed very serious.
     
  3. taniaaust1

    taniaaust1 Senior Member

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    Dainty.. it does sound a mystery as I may of had the answer if it wasnt related to somehow eatting 10mins before (thou you say you reacted to things you are okay with normally so I cant seem to make that part fit any of my thoughts either).

    If it wasnt triggered off by eatting 10mins earlier but rather triggered off by other things eg severe stress, trauma etc. Severe vomiting and diarrhear would of pointed towards acute attacks of Addisons disease. Many with that go throu symptoms just like you describe and may end up in hospital after several life threatening incidents of vomiting and diarhear before they finally get a diagnoses.

    It may be a good idea to get your cortisol checked... (or look into if food can cause an Addison's crisis)
     
  4. Enid

    Enid Senior Member

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    Sorry to hear Dainty and glad to hear your tests go on. All you say is very familiar to me and I cannot pin down except following a high dose Amoxcillan for some tooth infection I noticed better GI function (solids even). Used masses of probiotics after. My guess (we have to do things DIY here) is that of a build up of the wrong bacteria in the gut/severe infection. I do rest the gut completely too after an episode (with fluid intake only - able to do so as slightly overweight - slow food introduction after).
     
  5. justy

    justy Senior Member

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    Hi Dainty, so sorry you are having to go through this, it sounds awful.

    From Wikipedia:
    "Addisonian crisisAn "Addisonian crisis" or "adrenal crisis" is a constellation of symptoms that indicate severe adrenal insufficiency. This may be the result of either previously undiagnosed Addison's disease, a disease process suddenly affecting adrenal function (such as adrenal hemorrhage), or an intercurrent problem (e.g. infection, trauma) in someone known to have Addison's disease. It is a medical emergency and potentially life-threatening situation requiring immediate emergency treatment.

    Characteristic symptoms are:[6]

    Sudden penetrating pain in the legs, lower back or abdomen
    Severe vomiting and diarrhea, resulting in dehydration
    Low blood pressure
    Syncope (loss of consciousness and ability to stand)
    Hypoglycemia (reduced level of blood glucose)
    Confusion, psychosis, slurred speech
    Severe lethargy
    Hyponatremia
    Hyperkalemia (elevated potassium level in the blood)
    Hypercalcemia (elevated calcium level in the blood)
    Convulsions
    Fever"

    Has your Doctor considered this?
     
  6. Dainty

    Dainty Senior Member

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    Thanks, everyone. :Retro smile:

    I'm quite certain it isn't an allergic reaction to food, since I've intentionally eaten the leftovers off the plate of food (or jar of food) I was eating directly before such a crisis without any problems occurring whatsoever. I've also had it happen after eating different foods, i.e. I had only eaten beef and potatoes for weeks and it happened, or I hadn't eaten beef and potatoes in several hours and ate some pecan butter and honey and then it happened. So there's really no correlation to that that I can find. Also, allergy medication does not relieve the crisis.

    Addison's/adrenal crisis is an interesting one that I'll have to look into. I do know that the episodes haven't happened in connection to severe trauma or stress...my day is as normal as can be and it hits me out of nowhere. I had my cortisol checked several years ago and was low, couldn't tolerate hydrocortisone so was left untreated, then in February began successfully taking cortisol. I was up to around 25mg of cortisol the last time one of these episodes happened in early April. How does that relate to the adrenal crisis theory?

    Enid, sorry to hear it. What I can't figure out is that if it's a build-up of bad bacteria then why would I have no gut issues otherwise except this acute onset thing (I don't know if it is the same for you)? Anyway if that's the case hopefully we'll catch it with not only a regular stool test but also hopefully testing during one of these episodes, and if it's a severe gut infection that should show its ugly head.
     
  7. ahimsa

    ahimsa Senior Member

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    Dainty,

    I was looking through the list of clinical trials related to dysautonomia. (followed some links and ended up at clinicaltrials.gov, funny how that happens, LOL) While I was browsing I saw this one which listed Cyclic Vomiting Syndrome (CVS):

    http://clinicaltrials.gov/ct2/show/NCT00728026?term=Dysautonomia&rank=55

    I have never heard of CVS before but I remembered reading the description of your problem and it sounded like maybe it was similar. So, I looked it up and found this list of symptoms on the Mayo Clinic website:

    I don't know whether this matches exactly what you are going through but it did have some similar symptoms so I thought I'd post this just in case it helps. Here's another link (I'm sure there are more) - http://www.cvsaonline.org/index.html

    :hug: Sending lots of hugs to you! :hug:
     
  8. Wayne

    Wayne Senior Member

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    Hi Dainty,

    Sorry to hear of these "episodes" you're experiencing. They actually remind a bit of my Mom and (her mother) who used to get "spells". She would actually pass out and her bowels would empty at the same time. However, at least in my Mom's case, stress did seem to trigger this, and she experienced less of them once she went on Cortef. She never had any accompanying vomiting with it either.

    I do seem to remember that the doctors often speculated that it might be something related to her vagus nerve, which runs through the stomach and entire GI tract. So if the vagus nerve happens to "convulse" at times, perhaps this could be indicative of vagus nerve involvement.

    I'm not sure if you're aware that Lyme bacteria can affect any of the 12 major cranial nerves. That's why pwLD can experience swallowing difficulties, Bell's Palsy, etc. Not saying you have Lyme, but if Lyme bacteria can do this, it seems plausible other kinds of bacteria could cause it as well. I wonder whether you've had any experience using antibiotics, and whether you may have noticed a lull in your episodes at these times?

    Another possibility is that this could be some kind of "structural" problem. I myself have written about my own experience of doing a procedure called Atlas Profilax which "repositioned" my atlas, and released a lot of chronic pressure on my cranial nerves (I especially noticed the vagus nerve). If you're interested in my story, you can read about it at:

    Cranial Nerves - Vagus Nerve - Digestion - Atlas Profilax

    Good luck in finding something that will help you with this. It sound pretty scarey, and I think it's a good idea you're seeking out some creative thinking to help you try to decipher this all.

    Best Regards, Wayne
     
  9. Enid

    Enid Senior Member

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    Can I pop in and say this is very helpful thinking Wayne - structural, vagus nerve involvement and opportunist virus/bacteria in a clearly compromised gut action. Pause for more thought and thank you. My understanding is of an original (maybe persisting) viral infection of the nervous system - vagus involvement sounds pretty pursuasive.
     
  10. taniaaust1

    taniaaust1 Senior Member

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    I dont know much about Addisons only a bit from my on and off searches for info on it over past few years but what I do know is that those with Addisons do at times need to raise their cortisol meds in accordance to things going on in their lives at times eg if they are sick.. they often need to raise it.. to prevent Addison's crisis. So hence 25mg cortisol IF you did have Addisons.. may not at times in your life be enough.

    Many with addisons dont get a severe crisis until they do something like undergo surgery for something else. (it can be quite a hidden illness for quite a long time).

    Be aware too that if you've been on cortisol.. that can have a side effect of actually causing Addisons as the adrenals can end up producing less cortisol in response of the supplemented cortisol. Its the main reason why cortisol supplementation is rarely used in ME/CFS due to that risk.

    I really think you need to have your cortisol checked again to play things safe.
     
  11. Dainty

    Dainty Senior Member

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    Thank you for your replies, everyone.

    I had another episode today - I suppose its yesterday now. My caregiver was with me but I ended up having her call an ambulance anyway. The ER experience was mostly positive, for once (yay!) but although I'd love to swap stories I'm going to keep this post focused on understanding this thing. A quick warning - while I'm less comfortable with the explicit nature of some details here, I feel this situation doesn't leave a whole lot of room for modesty so if you'd rather not read some gross things then please consider yourself warned. :Retro smile:

    This episode did not last as long as the previous one - about 40 minutes as opposed to an hour - but it was more severe in a few ways: 1) after it had been going on for a while I also lost control of my bladder, and 2) the pain was worse than any previous episode. It's hard to accurately rate pain when previous experiences have been at a "10" on a 1-10 scale, but this is the first time I've emerged from an episode with an untold number of fingernail marks covering my belly, thighs, the palms of my hands, and other random body areas my hands happened to be near when my fists closed from the excruciating pain. I didn't even realize I was digging in that hard. In the previous episode I had a few marks on my belly, but at that time I did realize I was hurting myself and they were much shallower and far, far fewer in number. A weird way to rate pain, but quite reliable in this case, I think.

    Another thing different was that this time I had a minute or two where I lost the ability to speak or lift my head off the floor at all. I'm not sure what happened, it was during the thick of it and I had just asked for pain meds (more like demanded it at the top of my lungs - poor caregiver) and I was suddenly too weak to writhe, speak, lift my head, or move hardly at all. I had an unexpected break from the severe pain levels during this time and the extent of how ill I felt plus my sudden unexplained weakness was quite concerning to both me and my caregiver. It slowly passed over a couple minutes and I was soon back to the "normal" experience. It was then, as the pain and screaming returned, that my caregiver called my doctor, and within the 5 minutes it took to work out the arrangements matters had escalated to such an extent that I instructed her to get an ambulance.

    The ER doctor was amazed I haven't been in there before for these episodes, that we've been able to take care of them at home in the past. I think it's important to emphasize that this is not merely vomiting plus diarrhea....I don't know what it is, exactly, but it's far more incapacitating than that. It always begins with abdominal pain, and I soon feel very overheated and am sweating all over so that I must remove all clothing for a measure of relief. In a previous episode I was determined to remain clothed and consequently passed out, so I've learned my lesson there. The pain debilitates me (screaming, writhing), the weakness keeps me down and then the nausea starts to build, and after vomiting begins then the uncontrolled diarrhea adds to the mix, and as it continues it seems now loss of bladder control is also added.

    There are many different kinds of urinary incontinence, most of them referring to some form of leakage. That is not what I experienced. After about 20 minutes of this screaming, vomiting, and uncontrolled explosive diarrhea my bladder just emptied, suddenly and completely. I had zero control over it - I couldn't even begin to try to stop it, as is possible under normal circumstances - it was as if the muscles weren't receiving the signal, and no attempt could be made to stop the flow. This made me think of Wayne's suggestion of some sort of nerve involvement.

    In previous times I had been oblivious to prior symptoms thanks to my standard coping strategy of ignoring and tuning out "background" symptoms, but after the previous episode I realized I had to pay attention and while it resulted in a few false alarms it also means I have more info to bring to the table this time around. I began to notice something was "off" about a week in advance, which is what prompted me to begin this thread and take the stool tests, which were just mailed 2 days ago. If some sort of gut parasite or infection is causing this it'll show up there. The day before the episode I was feeling notably sick to my stomach, had minor nausea and vomiting and had more of a need to lie flat than usual. I hesitated to eat my evening meal, not feeling quite up to it but still hungry enough that I overcame it.

    The morning of, my stomach was feeling crummy enough that I seriously considered skipping breakfast and simply fasting until I felt better, but I thought of the addisonian crisis theory and decided to eat only so that I could take cortisol. My stomach continued to feel poorly over the next several hours, had a bowel movement of soft stools, and abdominal swelling. I knew something was definitely off, but unable to fix it I logged it away and went about my day. It was soon after I had absent-mindedly eaten some pecan butter/honey some 5 hours later that I noticed things escalating. I had more warning this time, probably 'cause I was actually paying attention instead of trying to drown my discomfort. I called my caregiver to say it might be happening so try to stick close today and then 4 minutes later called again saying she'd better come out now. About 2 minutes after that I was on the floor.

    So now we know that there is prior warning and it is not something that hits me out of the blue, as I had previously assumed. I think that rules out addisonian crisis. The more I researched adrenal crisis the more it seemed the symptoms do not fit my case, leading me to be confident enough to adamantly refuse to consider taking cortisol during the episode. One strong indicator is that the pain is not sharp as described in an addisonian attack, and it is never in my back or thighs. Rather it is a generalized pain - excruciatingly severe generalized pain, but generalized nevertheless. The other thing is that my body has been through some significant crises without having these episodes following. Examples: dental surgery with inadequate pain medication and then epinephrine which caused violent whole body tremors, a time when it appeared two men were breaking into my residence with no one nearby to help me, and a panic attack. If those three things didn't bring it on, then I don't see how my normal daily stresses could suddenly cause this kind of problem. A pity...for a while there I was excited that we may have found our answer. :( I do agree that cortisol levels checked would be wise; lets just say it's on a very loooong list of things to do. :p

    Ahisma - thanks for the suggestion. I don't think CVS is my issue due to the primary symptoms not matching up, but I will definitely take those hugs and I really appreciate you taking the time to look that up for me and post it in case it was helpful.

    Wayne - looks like your theory of nerve involvement is currently in the running. I feel like you should get a prize for that, lol. Here ya go: :balloons: In answer to your question, the short of it is that antibiotics played a role in my onset but I have not taken them since. Explaining more of your thoughts on the nerve involvement might be helpful, if you can manage it. (I can even get you more balloons! :D)

    Since this episode ended I'm concerned that my stomach isn't going back to normal. It feels about the same it did the morning of, so I'm refraining from all food for a while still, whereas usually by now I'd be eating liquid foods and considering solids. One theory is that by administering antinausea meds the normal process was interrupted and if so I may yet have another episode soon, possibly even the next time I eat. My plan is to take it reeeaaally slow and hopefully things will resolve.

    *sigh* long day, long post. Glad I have you all. :hug:
     
  12. Glynis Steele

    Glynis Steele Senior Member

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    Nothing helpful to add for you Dainty, just some big hugs. :hug: :hug:

    Glynis xx
     
  13. madietodd

    madietodd Senior Member

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    Oh, Dainty, I'm so sorry. Did the ER doctors say anything useful? Or do you have follow-up coming on with your doctor? Now that everybody is alerted to this situation? I stole this from Sleepy, slightly modified:

    (`v)`*..*SPRINKLING ..*)(`v)`*..* .*) YOU (. (. ?..`. . .? .? . .? .? . . WITH. *+ . + * +. + . . ?*+ . + .? .? . , *. + * + * + . . * + . LOVE ...* + * .(`v) * .? .? . + .* . * * ?+ HUGS. *.* . + . * + * * . `*..* + * .? .? .
    .? .? .

    Big hugs....

    Madie
     
  14. Mya Symons

    Mya Symons Mya Symons

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    Something a bit similar happens to me, but I don't think my symptoms are quite as severe as yours. I do get the SEVERE (sometimes doubling over and yelling) abdominal pain and diarrhea attacks, but probably not as often as you do. I have problems with the sigmoid colon swelling but I do not have ulcerative colitis or Chron's disease or any other pinpointable problem. Sometimes I also vomit when this happens. I have learned to take a bowl with me to the bathroom just in case. However, I can usually hold it until I get to the bathroom. But, when I vomit I do "pee my pants" all the way (emptying most of the bladder), so I always do the bowl and the toilet at the same time (this is gross, sorry). However, I have other problems with my bladder that I have had for years. These episodes usually last anywhere from a half hour to three hours. I abuse Immodium and take it way to much. The gastroenterologist says this is very bad as it can mess with the flora of the intestines. It is hard to stop doing this, however, because I just want relief. Most of the time I am constipated (this is without the Immodium) or the feces don't move at all through my system. And then I will go through attacks of the diarrhea and abdominal pains for a few days or more and then back again to everything getting stuck at the turn before my rectum for several weeks. (more severe then IBS) I have tried Align and Sacchrimysis Boldaris (probably did not spell that right) and yogurt and acidolphus etc. and nothing has worked. I also cannot pinpoint a specific food. I have tried the elimination diet and did not notice any difference in the way I felt or reactions I may or may not have to food.

    Dainty, have you ever been tested for stomach cancer? Some of the symptoms match up.
    I am reading over your posts again. I don't think my issue is even near the same. I do sweat and the pain is bad, but I think mine is caused by a severely swollen sigmoid colon for whatever reason. It is a mystery. There is no paralysis of the rest of the body or anything like that. I hope your doctor figures out what is going on with you. It sounds horrific.

    One more thought. I know someone who has Ehler's Danlos Syndrome, FMS, and CFS who became allergic to protein and had similar symptoms (gastrointestinal). The pecan/butter honey reminded me of this. This poor woman can't eat much of anything anymore.

    5 Causes of reocurrent diarrhea and loss of bladder control

    http://www.freemd.com/s2/0974/accidental-loss-of-bladder-control-recurrent-diarrhea.htm

    Number one is menapause. Don't believe that one.
     
  15. Timaca

    Timaca Senior Member

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    Dainty~ I have nothing to offer you but my prayers and hugs. May God provide you and your doctors with some answers and treatments soon.

    Timaca
     
  16. Enid

    Enid Senior Member

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    Wishing you well Dainty and hoping Docs can find answers and ease for you.
     
  17. warriorseekspeace

    warriorseekspeace

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    Dear Dainty,
    I just sent you a private message with some thoughts about potatoes. The more I think about it, the more I think you'll find it to be interesting reading, if not perhaps helpful. I know it seems horrible to suggest someone so limited in foods she can eat consider that one of them might possibly be doing harm, but just in case you weren't aware of the solanines in the nightshade family of vegetables, I thought I'd copy this email a friend sent me two years ago, about their involvement with pain, joint and gut symptoms.

    Especially the part about eating potatoes building up toxic levels of solanine (a neurotoxin) over several months, and maybe the thousandth potato causing symptoms, I thought you might find useful. I noticed you sent me an email a few days before the GI episode, stating you were having alot of pain, too, which I thought could indicate you wre having a buildup of something otxic to the joints.

    My only other thought is that it does sound sort of infectious or parasitic. But I thought you'd find this interesting. Especially about how common people knew hwat not to eat, but that non-foods were introduced as foods.

    WaSP
     
  18. Wayne

    Wayne Senior Member

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    Nightshades

    Hi WaSP,

    Thanks for posting the above information on nightshades. I have a friend who mentions it quite frequently, and how it changed his life to stay away from those foods. I have a very limited diet which normally doesn't include nightshades, but I've noticed I don't do well after I eat an occasional natural organic potato salad, or an organic dish which includes salsa. Looks like it may be time to avoid them entirely.

    Best, Wayne
     
  19. madietodd

    madietodd Senior Member

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    I've been completely off nightshades for years. Now I can eat potatoes once in a very long while, and I just "pay" with temporary stiffness in a few fingers. I went off them when I noticed I could barely walk up stairs from hip pain (!).
     
  20. leela

    leela Slow But Hopeful

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    I am so sorry to hear about this.:balloons: What horrible torture. I hope you will find a doctor who will treat this effectively right away, because repeated episodes like this cannot be doing your beleaguered system any favors...

    FWIW it seems neurally mediated to me too, and the Lyme theory seems plausible.
    Regarding diagnostic signs, though, one thing I have noticed with ME is that one rarely presents with the "typical" or average signs and symptoms.

    It also seems akin to toxic shock, so I wonder if you have staph or strep in the gut?
    This is common in ME. It might be time for a comprehensive GI panel (the kind where you collect your stool for three days) for parasites and bacteria. The symptoms are not too far from dysentery or giardia either, so the GI panel sounds like a really good idea IMO. I had one from DiagnosTechs.

    Hope you're feeling better! :hug::hug:
     

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