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cause of sensitivities found(sort of)

Discussion in 'Hypersensitivity and Intolerance' started by Aileen, Feb 12, 2014.

  1. Aileen

    Aileen Senior Member

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    I have been plagued by extreme sensitivity to odours, light, sound, food, temperature for years. I didn't know what was driving it. Now I know, in general terms.

    I had been taking meds to try to calm down the over-firing neurons. One med, the first one I started on 20 years or so ago, was Neurontin (gabapentin is generic name). I didn't really think it was doing much for me so I decided to wean off it and replace it with Lyrica (pregabalin) with my doctor's permission. Lyrica is the 2nd generation of gabapentin and works on the same receptor.

    When I finally stopped the gabapentin, I started noticing a really foul body odour. Not normal. Smelled like something was decaying inside me. It progressively got worse over the next few days. I was getting washed every couple hours, but could not get rid of the smell. I started tasting it. I could not get the smell out of my nasal passages. It made me nauseous. Gave me a migraine and I had an entire night of vomiting.

    I called the doctor and started on Lyrica. I have just started it 2 days ago but it is starting to help. I'll have to get the dose up more but it must be done gradually. Gabapentin and Lyrica apparently work by cutting down on the signals being sent from neurons. So fewer distress signals were getting out which I think is how it is helping.

    But ... my cranial nerves, and probably the rest of my body, is being bombarded with "something". No wonder they are in such an uproar. And anything that adds to it, like other odours (ie perfume), lights etc push it completely over the edge. Probably what is happening in my gut too.

    The "something" is clearly an infection and/or a toxin. But, we've done the usual stool tests and no parasites, bacteria or other troublemakers found. Blood tests have come up negative for the usual viruses and bacteria. I've been gluten-free for a year. How do I identify the problem? Clearly the something needs to be cleared out but I don't know what I'm trying to get rid of. :grumpy: Glad to know what's driving the sensitivities though.
  2. Hanna

    Hanna Senior Member

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    Aileen, have you been tested for Borrelia and co-infections? (eitherby labs and a Lymw literated Doc)
    It seems that some folks here who have been diagnosed with ME/CFS have that problem. Neuro-borreliose may indeed give you troubles with gaiting etc.
  3. Aileen

    Aileen Senior Member

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    Hanna, yes I have been thoroughly tested for Lyme and related infections. Not those.
    Hanna likes this.
  4. Snowdrop

    Snowdrop Senior Member

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    I'm just throwing this out for consideration. I have not yet done it but plan to soon.
    If I'm reading your post right and you're concerned about toxins. You might consider Bentonite clay footbaths to remove toxins.

    Also, I just started Lyrica as well. May I ask what dose you were RXed. and the symptoms it is relieving, are they the sensitivities you mentioned (odours, light sound etc)? I'm not sure Lyrica is doing much for me. I have experienced some level of sensitivity to the stimuli you mention but now that I'm always home I'm somewhat sheltered from having to deal with that. The only benefit I find is I think it helps me stay asleep and prevents multiple wakings.
  5. Aileen

    Aileen Senior Member

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    @Snowdrop I just started on the Lyrica on Monday. Dr. prescribed 25mg capsules. I am to take I capsule at bedtime for 1 week; then 2 capsules at bedtime for 1 week; then increase to 3 capsules at bedtime. Not sure I like the dosing schedule though. Taking morning and bedtime would be better I think. I've always taken the gabapentin several times a day depending on dose.

    Haven't been on it long enough or at a high enough dose to know what it is really doing just yet. But, the vomiting has stopped and the headache has gone down to a manageable level. Still smelling and tasting the nasty whatever but not as bad. Having nausea again now though. :grumpy:

    I too am housebound and continually jumping through hoops to keep the worst symptoms from getting completely out of control. I am thinking of ordering a uBiome kit (see this post) to try to narrow down the culprit.
  6. Snowdrop

    Snowdrop Senior Member

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    @Aileen Thanks for responding Aileen. I was offered a starting dose of 75mg although I broke it up myself to 1/2 to start.
    I'm glad you ae recovered from the vomitting and headache.
    Good luck with the treatment.
  7. Aileen

    Aileen Senior Member

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    That's usually my line! :D According to the Physicians Desk Reference it comes in a number of different strength pills - 25, 50, 75, 100, 150, 200, 225 & 300mg capsules. The gabapentin comes in 3 strengths and when I asked the doc about coming off, I asked to go to the smallest strength so I could reduce more slowly. She also knows I like to start low - I tell her when I've chopped up pills. So, I think she's getting the hang of this "start low, go slow" business. :thumbsup:
  8. Womble

    Womble

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    I'm not sure I understand what is driving the sensitivities, from reading your message.

    How you respond to different medications doesn't necessarily explain the root cause, does it?

    Maybe you can explain further (I suffer from the similar condition to you)
  9. Aileen

    Aileen Senior Member

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    @Womble Sorry you are dealing with this also. It was not my response to medication per se that provided the insight.

    My biggest problem with this illness is severe hypersensitivity to things esp odours, which in turn causes other problems. I have been taking anti-seizure meds to try to calm this down. They block the messages the sensory nerves are sending to the brain. So the input (cries for help) is cut down. I wanted to try a different drug as I didn't think the current one was doing enough for me. I had to first wean off the current one in order to do this.

    When I got off the current med (gabapentin) I noticed an increase in sensitivities (to things like food smells). That was to be expected. BUT... what was not expected was I noticed a smell that was coming from my body, that I was generating. The odour was like something was decomposing. As though I had swallowed a dead rat whole and it was decaying in me.

    Over the next few days it got worse. It was so totally overpowering it caused severe nausea and vomiting and headaches. No matter what I did, I could not get rid of the smell. I had the same nasty taste in my mouth that I could not get rid of. It was so strong it was like a skunk had shot it's "perfume" directly into my nostrils and I could not get it out. That overpowering.

    The only thing I can think of that would cause this type of odour is an infection. Either a general infection or perhaps the wrong gut bacteria. Likely something is giving off a lot of sulfur or possibly ammonia. But I was not aware of this until I got off the med that was blocking the signals the sensory nerves were sending to the brain to tell me it was there.

    Now I am on a different drug (Lyrica) to try to better block it so I can cope. However, now I know it is happening and am now trying to figure out how to identify the culprit. I believe the trouble is with bacteria not viruses. There could be a fungal infection too, not sure, but that should not be hard to test for.

    Now I am revisiting the whole bacteria issue. I thought I had ruled out all the tick-borne illnesses but it going back through my test results it appears that bartonella and brucellosis have not been tested for.
  10. Womble

    Womble

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    An interesting story, I'm sure that CFS/ME and resulting sensitivities could easily be caused by a virus or infection or a bacteria in the gut.

    So you're saying you can actually smell an odour that is coming from your own body? Maybe you're onto something.

    I am sensitive to chemicals and can smell them in the environment but I've never detected anything coming from my own body.

    I'm not currently on any medication, just use various supplements like glutathione and CoQ10.

    Everytime I've tried to treat the "Leaky Gut" and the gut bacteria with various supplements like Glutamine, Aloe Vera, etc.., I usually get very sick from doing that, so I'm hoping they will do more research in this area to figure out what bacterias are potentially involved and how to treat them.
  11. taniaaust1

    taniaaust1 Senior Member

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    I wonder if it was doing something as far as your mutations are concerned (drugs can work in more ways then science is currently aware). Isnt it the CBS mutation which has sulfur issues and can make a person smell like ammonia? (check your geneticgenie report). Anyway..consider the possibility that something may of gone on there as that can cause a stink.

    I also came across something new which I didnt know this morning. This may be relevent some to you too. The MTHFR mutation, I notice you have a double couple too. Dr Lynch says in his stuff one of the effects of this mutation is being more sensitive to chemicals! (this is mentioned on the basic protocol page at the MTHFR site.. quite a way down ..where it lists the affects of the mutation).

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