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Itching from immune activation?

Discussion in 'Immunological' started by justy, Feb 13, 2015.

  1. justy

    justy Donate Advocate Demonstrate

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    Just wondering if anyone understands anything about what mechanism COULD be going on here.

    I have had severe body wide itching since last November when I reacted to Doxycycline. My GP said this was an allergy, my M.E doctor said it was immune activation not an allergy.

    I stopped the doxy and it went away after a couple of days. I tired the Doxy again, the itching came back, so I stopped it again. Then I started on a round of trying a number of different antibiotics, all of which I couldn't tolerate for one reason or another (but no itching at that point).

    Then I started Omeprazole for severe 24 hr a day acid reflux and the itching came back, then settled. Then I took a herbal remedy for my lungs and immune system strengthening and the itching started again. I stopped the herbal and the herbalist took out the immune component and gave me just a gentle lung tonic. This caused itching and then the itching never stopped, even though I withdrew the herbs.

    I tired Loratidine (anti histamine) and this worked for two weeks then stopped working. Then I tired cetirizine and this only worked for two days. Then I tired piriton at night and this helped a bit, but was sedating and I didn't want to take an anticholinergic drug anyway.

    So I stopped ALL anti histamines and that seemed sort of ok and started a low histamine diet which is very tough but seemed to help. Eventually I had to double up on the PPI as the reflux was not controlled by the normal dose. Around this time, but hard to know if related the itching came back in full force. MY GP suggested a double dose of cetirizine - which is helping but not curing the itching - just damping it down a bi and the drug is making me feel like a zombie plus nightmares at night and feeling very dizzy and crappy.

    KDM has prescribed calcium tablets for the itching - 500mg 3 x daily - don't know if this is helping. Now I feel ill form the drugs AND I am itching still! the low H diet is not working anymore, but if I go off it the itching seems to get worse (but hard to tell).

    I have a bowel investigation and tooth filling on hold due to worries about the drug reactions involved. My GP thinks some kind of immune activation caused by the initial drug? I don't really understand this - he also called it idiopathic urticaria - but I don't have any rash.

    The itch is body wide - everywhere at once - and also at times very painful, and very distressing to suffer from - on days it isn't controlled at all I just sit and cry and cant cope. I have also noticed an increase in burning patches on my arms recently.

    I have looked into a doctor who can diagnose MCAS in the UK but his fee is way too expensive. My GP offered to refer me to an immunologist but admitted the wait could be over a year so he has referred me privately - but who knows how sympathetic he will be or even whether he will understand anything about M.E?

    SO far I have Bartoanella positive, Cpn positive, high IL8, high PEG2 (very high) low positive ANA titres, (LL FROM kdm) and a slightly elevated IGM on serum protein electrophoresis and very low ferritin for years despite iron supps (NHS tests) the GP said the IGM WAS NOT SOMETHING THEY WERE CONCENRED ABOUT sorry not shouting - logn post v tired now...
     
  2. lansbergen

    lansbergen Senior Member

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    When mine is very bad I use a cloth to rub it gentle.

    Zink oxide is used for babies. Have you tried that?
     
  3. lansbergen

    lansbergen Senior Member

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    @@Jonathan Edwards - Any ideas?
     
  4. brenda

    brenda Senior Member

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    @justy

    It says here http://dermnetnz.org/systemic/itch.html that low iron can cause itching. The only time I have had this is when i was pregnant once and in one of my pregnancies I had to have IV iron. Maybe you need to find out what you need to absorb iron if it is the reason.
     
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  5. Thinktank

    Thinktank Senior Member

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    Your immune system has clearly gone haywire.
    For what it's worth, my girlfriend is experiencing exactly the same problem so i understand what you're going through. She was diagnosed with SLE last year and didn't have the extreme urticaria until she started doxycycline, clarithromycine and tinidazole for lyme disease. Just like you she has an "allergic" response to all the antibiotics and had to stop immediately.
    I now know that tetracyclines can exacerbate certain autoimmune conditions.
    Antihistamines did NOT work until she got on 20mg prednisone to treat a lupus flare. Things that have also helped in ranking order are:
    1. DAO enzyme before every meal
    2. Avoiding high histamine food
    3. Lypospheric vitamin C
    4. 5mg zyrtec just before bedtime
    5. Creon digestive enzymes

    Histamine intolerance is suspected but also IgE reaction to certain food. Her recent labwork also shows she has a mycoplasma infection and that alone can cause autoimmune reactions.

    It's outrageous that you have to wait a whole year just to see an immunologist! Is that standard practice in the UK??

    In previous posts you mentioned that a lot of your symptoms match SLE. Your reaction to some of the antibiotics might explain that. Maybe you can go to a commercial lab in your area and have an autoimmune panel done to rule out SLE and similar conditions?
     
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  6. justy

    justy Donate Advocate Demonstrate

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    Thanks for your response - I don't ever itch - I always rub the itch- apparently this is better. I can't use creams as the itching is from the top of my head to the soles of my feet all at once and even inside my nose and my ears and eyes. But thanks for the suggestion!
     
  7. justy

    justy Donate Advocate Demonstrate

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    Thanks Brenda. My ferritin has been low for at least 7 years 9from 5- 11 at its highest) despite supplementation this has never gone any higher - the GP just says 'oh you have heavy periods' that's why. I am go in and out of iron deficiency anemia all the time. The GP agreed that I should go back on the iron supps - but also thought it unlikely to be causing thee itching considering the onset. I usually take a gentle iron, but may have to go back to ferrous fumurate for a while - not sure I could cope with an infusion - the risk of allergic reaction is very high!
     
  8. brenda

    brenda Senior Member

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    Perhaps taking antibx lowers iron? I would look to functional doctors answer for this problem.

    Do you eat liver?
     
  9. brenda

    brenda Senior Member

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    Gluten sensitivity can inhibit absoption of iron. Have you tried going gluten free?
     
  10. justy

    justy Donate Advocate Demonstrate

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    Thanks for the full response - interesting your GF had the same issues - I also cant take any abx prescribed now and cant get treatment for infections underway.
    The abx I tired were: Rifampicin, Doxyccline, minocycline and clarithromycin.

    I will deal with your suggestions one by one as it is good to tease these things out a bit

    1. Prednisolone - pre M.E I was fine with this, but last year had 30mg a day for lung exacerbation/asthma issues and had terrible psychiatric side effects from it. In the end I sort of just about coped with 20mg a day decreasing if I took diazepam as well and didn't try and do anything at all and had someone at home with me all the time. By the time the dose went below 7.5mg I was sort of o and stopped the diazepam. I felt ok at this point and sort of didn't want to stop the pred as it reduced other points of inflammation in my body apart from just lungs.
    When I came off it I felt ALOT worse and don't seem to ever have bounced back since last summer. I have gone down a big notch in health.

    A couple months ago I tired it again for lungs (although my M.E doc said not to take it because of immune suppression) so I took 5mg, hoping to work up to about 20mg, and took a diazepam and that night I had awful racing, suicidal ideation that went on for hours. My GP agreed I should not take pred again, and might react this way to all steroids, but I will only take them now in life or death scenario.

    2. am trying low H diet - wow its really hard! and I am veggie too so even harder - but its sort of OK but boring. I am eating a lot more dairy and I don't think this is good for my asthma - but I need to eat some fats and I have an intolerance to eggs.

    3. will try the DAO - IS EXPENSIVE I THINK? ssorry caps lock

    4. will look into lyposhperic vit c - currently take 2 g day of vit c (magnesium ascorbate)

    5. am taking 15 mg of zyrtec a day in two doses and it is still wearing off and making me feel really crappy - the GP said to take 20mg a day!

    6. not heard of creon digestive enzymes - genova diagnostics stool test showed some issues with digestive enzymes I think - I have low chymotrypsin

    7. Lupus - saw a lovely private rheumy who suspects Lupus or Sjorgrens. KDM test showed low positive speckled ANA. He asked my GP to do full Lupus panel on NHS - had this done and all normal inclsuing ANA, except this slightly elevated IGM. The private rheumy said he would write to the local NHS rheumy and I did fiunally get an apt for March - I will have waited 27 months by the time I see them and it is not the one he recommended! The nice rheumy felt that my symptoms where not conclusive for M.E at all - although he said the probability of sero negative Lupus was 'vanishingly small' that is not what the Lupus orgs themselves say - I meet most of the alternative St Thomas criteria. i am still waiting to see the results from thee NHS tests myself.
     
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  11. justy

    justy Donate Advocate Demonstrate

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    Am a vegetarian
     
  12. justy

    justy Donate Advocate Demonstrate

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    I don't eat bread, but my diet is already very limited due to being veggie, having egg intolerance, being on a low histamine diet. i have gone gluten free for extensive periods in the past and it did nothing for my health. i am worried about becoming REALLY neurotic abput food
     
  13. brenda

    brenda Senior Member

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    Were you so strict that you cut out shampoos that contain wheat? It takes 6 months of this osrt of strictness for some people. Being veggie is certainly a challenge but there are things that you can add to your diet that will help like chia seed porridge with coconut water for breakfast and other raw vegan foods. You can have buckweat crackers too for example. Do you use raw powders for protein like hemp or rice? Quite a few veggie foods are not so good like Quorn.

    Ghee is a good fat as the casein is cooked out.

    Barley and or wheat grass powder for iron.
     
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  14. GracieJ

    GracieJ Senior Member

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    I feel your pain. I live with itching over most of me a good deal of the time with no ready answers. Makes you crazy. I wish I had good answers for you.
     
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  15. brenda

    brenda Senior Member

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    @justy

    I am in the same position as you. I have Lyme 15 years + and cannot take antibiotics. (I also have mercury and pesticide poisoning)The two times I have taken them in the past 15 years was an absolute disaster - and that was merely eye and ear drops. There is no doctor that can help me as I am sensitive to almost everything - or at least I was. I get a crisis and have to find alternative ways to deal with it.

    I knew that I had to take extreme measures in order to reach a state in which Lyme can be treated - but with alternative methods. So my diet is gluten, dairy, sugar. soy, caffeine, vegetable oils, fruit, low carbohydrate, all processed food, free and I drink distilled water with electrolytes.

    Since starting this diet I have been able to start supplements: b vits, selenium, zinc, swedish bitter herbs, magnesium oxide, and raw vegan superfoods.

    It has put my body into healing mode and so far these are my improvements of the last few months:

    Hair looking better
    Skin has cleared and people comment
    Dry skin gone
    Itching skin gone
    Eyesight, hearing and sense of smell improved
    Sinus congestion eased
    Sneezing less
    Peripheral neuropathy much better, no numbness or tingling and feeling in ectremities has improved greatly
    Itching in ears eased a lot
    Weight going down
    Ankle and wrist swelling going down
    Blood sugar going down and is now normal
    2-3 bowel movements per day with this http://www.baldwins.co.uk/herbs/swedish-bitters/swedish-bitters-liquid
    Huge increase in energy
    Brain fog decreased
    Depression and anxiety right down (unless I take MB12 or vit E)
    Swelling and pain in joints has gone right down.

    Yet still not treatment for Lyme yet. I just hope that this will give you hope.
     
    Last edited: Feb 13, 2015
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Itching is one of the least understood symptoms in medicine. I am told that 50% of all cases of itching have no known cause. Rashes can be itchy but there does not seem to be a continuing rash here. Itching occurs in obstructive liver disease (such as biliary cirrhosis) because of bile salts building up, but that is rare and does not apply here.

    So I strongly suspect this is a fairly typical case of unexplained itching. I do not think it has anything to do with immune activation. An immune system actively rproducing an immune response does not lead to itching. IgE mediated rashes can itch, but then there is a rash. The old story that itching goes with iron may just be that iron problems and itching are both very common.
     
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  17. justy

    justy Donate Advocate Demonstrate

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    Thanks for the response. The toxicologist i saw said the itching after Doxy was most likely an allergic reaction - it only all began with the Doxy so i cant understand how this is just 'one of those things' especially when in the beginning only taking drugs caused it. Yes i have no rash - no liver issues and ige was only just over 100 recently which is not high for me.
     
  18. lnester7

    lnester7 Seven

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    @justy, My sister struggled like u with the iron until she saw an hematologyst and she was put on methylb12 shots+iron. She nows feels great (On shots for the rest of her life). She is now even running. The b12 tests did not showed low but she was apparently showing it in the iron instead.
     
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  19. lansbergen

    lansbergen Senior Member

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    In my case the itching is related to the improvement process. It starts close to the end of a flare with what feels like something is expelled throught the skin. The wound is not bigger than a small pinhead.
     
  20. melamine

    melamine Senior Member

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    @justy - Our blood work has some similarities: low positive ANA, mildly elevated IgM. Some of my symptoms are those of Sjogren's but I am seronegative range for antibody confirmation of that and have a Dx of MCTD - mixed connective tissue disease instead. I was given a test dose of 10mg prednisone but certain symptoms got worse in spite of it.

    Some people have reported developing severe itching in relation to placement of metal dental implants. It was one of several symptoms that led them to have the implants removed.

    I react to cold with intense itching. It is not uncommon for doctors to use the term "urticaria" (rash) when what they mean is pruritis (itching).

    I did not feel any better/maybe a little worse on gluten-free. I have developed egg and dairy sensitivity - I have to take it on faith of test since I don't experience cause and effect symptoms specific to those that would clue me in.

    I would second the suggestion to use a good digestive enzyme because it can't hurt and might help indirectly. There was a time when I was experiencing chronic palpitations and starting digestive enzymes coincided with the elimination of that symptom.

    I'm afraid I don't have any good advice but I sometimes find myself rereading definitions for ideas: http://www.merckmanuals.com/profess..._disorders/overview_of_allergy_and_atopy.html
     
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