Allotmenteer

I take Histame for the DAO deficiency, which is DAO in pill form. It helped a lot when I first got histamine intolerance, and with the low histamine diet too I've mostly got it under control - except when I have to have a medical procedure involving drugs. I only take the Histame a few times a week now, but am still on the diet. Have also just started Betaine supplements as I also have hypochlorydia - think this will help the whole gut balance too.

Thanks all for your info. I'm not on any medication at all, and haven't been either. Am hoping that tackling the Lyme will tackle the dysautonomia eventually. I became very sensitive to everything I ate after an allergic reaction to antibiotics, including vitamin supplements, painkillers and probiotics. Discovered this was due to histamine intolerance, as the antibiotic had killed off all my DAO (diamine oxidase). Am slowly rebuilding my gut, histamine tolerance gradually improving, but would have expected my body to be hyper-sensitive to the sedative (which was a valium-based infusion), not totally insensitive! Will check out the EDS link, as I do have a degree of hyper mobility too (albeit very mild - it amounts to being able to put my hands flat on the floor without bending my knees).

I had to have an endoscopy recently to investigate my 2 stone weight loss. I opted for the sedative as this worked a treat 4 years ago when I was tested for coeliac disease. However, since then I have developed dysautonomia as my Lyme got worse, and this time round the sedative had absolutely no effect on me at all. They gave me 3 doses and I was still wide awake, so they had to just get on with me still conscious. It was all quite ghastly. But i don't really understand the mechanism which stopped the sedative from working, can anyone explain? Is it brain dysfunction?

I'm in the UK, so trying to get Lyme diagnosed was next to impossible.

I'm being tested for Mast cell disorder soon. currently I have Lyme, mild POTS, histamine intolerance and a dodgy thyroid. Since you posted years ago, I wonder how you are getting om?

My Lyme doctor says I have a form of dysautonomia caused by the nerve endings in my stomach overreacting to what I eat; this is the cause of my multiple allergies and food intolerances. Anyone recognise this? It's not something Prof Mathias tested me for, so she's going to do more tests.

Well, I'm already on a strict candida diet, eat no sugar at all, nor starchy foods, am GF and DF and yeast-free. But I can't take probiotics, as they give me uncontrollable shaking fits. I tried some natural probiotic goats yoghurt, which was ok for two days, then that too started the shaking. If I can't take probiotics, seems that all I can do is the diet. Can't have fermented veg as I'm histamine intolerant. Ever met a worse case of no-hoper?? BTW, I've lost 20lbs since christmas due to this, and I'm begining too look like a stick. A bent over, aged stick. :-(

Do you have lyme? Yes, I do! Did you have lyme? Still got it. When were you diagnosed and who did it (pcp, llmd, etc)? 4 years ill, then diagnosis, 2 years treatment, 2 years getting worse. Total 8 years. Found a private, non-NHS LLMD who is sadly no longer treating Lyme. Did you have symptoms for long prior to diagnosis? 4 years. Sent from pillar to post, told we don't have Lyme in the UK. misdiagnosed with a host other stuff I didn't have. Did you see the tick? Bulls eye rash? Not bitten by a tick, I was infected by biting deer fly two years running. Saw them bite me, saw the bullseye rash appear, had no idea what it was at the time. What treatments did you use and did they work? Two years of 300mg Doxy, which proved to be bacteriostatic rather than bacteriocidal. Soon as I stopped, symptoms got worse. I should have had longer, more aggressive treatment. Are you still experiencing aftermath from your disease? Trying to start new antibiotics but stymied by newly developed dysautonomia, food and drug sensitivities, lack of LLMDs in the UK, no money for proper treatment, utter ignorance in the NHS. My life is now a living ****. :-((

I have been diagnosed with Candida, but also have drug sensitivity. My doctor has advised me not to take anti fungals because I will react to it. I'm to have low dose immunotherapy to tackle the sensitivities, but in the meantime can't take anything for the candida. Has anyone else been in this situation? I've put myself on a very strict anti-candida diet, and use coconut oil, but still have a bad sore throat. Will the diet alone resolve it enough for it not to become systemic? I don't think I've had it for more than 6 months or so, in the gut, but only this week got oral candida. My immune system is weakened by chronic Lyme, I always took probiotics when on antibiotics, so am baffled as to it has suddenly become a problem. Any advice?

That's a lot of positive bands, looks like you definitely have Lyme, from what I understand. Suggest you see a Lyme-literate doctor ASAP. I don't rely on anything a non-LLMD tells me, and I ignore any advice from IDSA website, ILADS is the one to go with, IMO. You'll discover that Lyme is a very contraversial illness, but if you're in US there are plenty of specialists. Here in the UK we don't have any. Still struggling with Lyme myself. Good luck.

Are there any painkillers you can take if you have histamine intolerance? I've had a constant occipital headache for 10 days now. All I eat is low histamine veg, gluten-free pasta or rice, chicken or white fish. Saw Prof Mathiass on thursday, who was very nice, very attentive. He's writing to my GP with a list of recommended tests, but thinks I have some form of dysautonomia plus a definite histamine problem (as I had guessed).

No, no MSG (gives me migraine so I haven't had it since I was about 17 - which is 33 years ago!), never have anything with asparatame either. No corticol test either. I thought leaky gut likely, have been eating gut-healing cruciferous veg and low-fat protein only for over two weeks and am beginning to feel better - stomach pains better this week. Appt with Dr Mathias on thursday!

Me too to all of this. When I'm hungry I have the occipital pressure, very very jittery, light-headed, trembling thing. Not like I used to have in the old 'normal' days but far far worse. Then, when I eat, I feel worse for a bit, then after, I can still be jittery too. My whole day is spent trying to eat enough at the right time to calm the jitters, but haven't found a balance yet.

I get really cross when doctors tell me I'm having panic attacks when this happens. It makes it sound like I'm causing it by being stressed or anxious. I'm not any of these things. When the adrenaline rush thing happens, whether from histamine overload or something else, I am always calm, never hyperventilating, not anxious, often even just asleep! Ordinary doctors can't seem to get it into their heads that this is a physiological thing happening to us, not a psychological thing caused by us.

Oh, and seeing neurologist on 7th feb, but seeing him as private patient (for speed) so,gulp, all tests have to be paid for privately too. *penniless*

Not on any pills at all, as still waiting to be diagnosed. I have cut out gluten, dairy, and histamine-rich foods this week to help my gut feel better, but could this be making me feel worse in other ways? My diet was healthy to start with, so not a huge shock to the system I would hope.

Why is my face so tingling and numb? It's getting worse....

Have now got appt on 7th feb. Fingers crossed.

I have Lyme and Thyroiditis, which have in turn triggered Dysautonomia, my Lyme doctor thinks. I had a bad reaction ten days in to some new antibiotics, which caused intense shaking, chills, face tingling and numb, trembling, breathlessness. Over the next few days I had the same reaction to aspirin/paracetamol, a probiotic pill, and increasingly after some foods. Have tachycardia, GI problems and headache now too. Having done lots of googling from my sick bed, my current theory is histamine sensitivity. The anbx is one known to have histamine in, and I react now to tomatoes, pork, garlic, smoked fish. Having had antibiotics for two years for chronic Lyme, I could be low in diamine oxidase, so can't turn the histamine off. Sounds logical, now just need to find someone to diagnose me. GP doing some blood tests, but can't find a lab in the uh to test DAO. She's also testing to rule out carcinoid. Am waiting for a private appt with Dr Mathias to come through. But had been wondering if any Oxford doctors know about ANY of this. They're certainly useless for Lyme. Allotmenteer

Gonna try a low-histamine diet for a while, which will need to be gluten-free too cos of GI problems. Spent the afternoon googling and found some very mixed messages. Avocado is out, but here's a yummy avocado recipe, for instance. All teas are out, OR herbal teas are in. No wonder I am confused. Anyone found a decent source of recipes? Don't want to spend money on a book if it's only temporary. UK recipes preferred, but any source welcomed. This is such a helpful forum, thanks all for advice from my other postings.

Also - how long does the histamine reaction last? My shaking attacks are always about 40 minutes, but I've just had another one this morning which must be a continuation of last night (I haven't eaten anything yet, and have only drunk water). Presumably my body is still reacting to the same trigger? (sorry about the multi-posting; you can tell I've had a bad night).

Is it worth asking for an NHS referral for allergy testing, given my recent history (esp possible histamine sensitivity) or is it too basic and unlikely to show anything meaningful?

Have noticed a couple of mentions of Oxford on here. I live near there too. One message said "avoid it like the plague" while another said they'd seen some helpful doctors. Any experience of local consultants welcomed, please.

I had the hot feeling in my head and the back of my head during last night's attack too. What does it mean when you say "adrenaline is the antagonist of histamine"?

Ooh, been reading about histmine response; it was pork mince in the bolognese I now discover, which is apparently high in natural histamines, like the tomatoes. As is the Cefuroxime, which is the antibiotic I was taking when all this started. Beginning to look likely then?