Sjorgrens I appear to be allergic to just about everything

Hi Shira,

Yes I have noticed a difference in my eyes already. So fingers crossed that it will work on the mouth next. Does say that it can take 1-3 months before you see improvement. So far so good.

Mandy x

That's great Mandy! How many mgs are you taking of it daily?

1,000 mg per day.

Mandy

Good to know, the Dr. Oz show recommends 2,000 mg for Sjogren's but that can get really expensive.

Hi Mandy,

I'm very interested to hear about your progress with the sea buckthorn.  Sounds promising.  Sounds like you prefer to minimize the usage of prescription medications.  Have you tried changing the foods you eat?  Changing the way I eat has made a big difference for me.  Many of my symptoms have gone away and only reappear if I eat certain foods.  Hope you are feeling better.

 

Hi Morelia,

I try not to use prescription medications but only because I have allergic reactions to them.  I have had to stop taking the Hydroxychlorquin because it was causing problems with the muscles etc in my legs.  Since stopping this medication my muscles are no longer a problem.

regards,

mandy

Mandy - how interesting that so many people aren't able to tolerate hydroxychlorquin. Good information about SS is difficult to come by and find that this forum has been a good source.

thank you for sharing. 

Hi Shira,

yes I do take Claritin and yes they always help.

regards,

mandy

To be honest I cannot understand why the entire medical profession prefers to give a quinine which could can damage the eyes when most with Sjögren's have the sicca symptoms of the eyes. This is the PRIMARY symptom of Sjögren's a Schirmer of >5mm in 5 mins. I was 2.3 at 21! As for food reactions, you really need a referral to either an allergy clinic of if your really bad then you need to be tested in neurology for 24 hours. This is available in the UK at UCH in London the only tertiary neurological hospital in the UK. I have been there myself and cannot praise the treatment I received more highly. 

Hi sonali, pam and others. Thank you for a very interesting and informative conversation.

I've a couple of things to add that may be of interest. Firstly, with regard to food allergies and intolerances, I get one of two rescyions to many foids (i) hives, swelling and eczema or (ii) bloating, stomach cramps and diarrhoea depending on what I've eaten. However when the did allergy testing on me it virtually all came up negative. Food intolerances don't show up on the allergy tests. The other thing is that I'm allergic to soya and corn. Corn (or maize to give it its American name) is in everything from maize starch, dextrose, glycerol, (some sugar has glycerol added), golden syrup ... the list is very long and can be found on the web. So for those people who have said they can't find out what they're reacting to, try cutting out corn. It's easiest to just eat meat and vegetables for a week at every meal to see if there is an improvement. No processed meat as much of that has dextrose added. If still no luck feterminng what you're reacting to, look up histamine intolerance. Again there is another extensive list - look on allergyuk.

I agree with 5Barbara about the soy and corn. Here is my core list of what to avoid if you are not sure.

Soy

Corn

Dairy

Wheat

Sugar

All and any derivatives of these. Avoid for at least 3 weeks, completely--you will need discipline. After three weeks, introduce one of the food groups back into your diet being careful to ensure no overlap of the other foods you are avoiding. Eat 2-3 helpings of that food group for a day or two and be observant of your body or symptoms. See how you feel. Then do the same for each item. This is a cheap, non-invasive way to help solve the puzzle so many of us are faced with. Basically stick to whole foods. If you are not sure, then use the paleo diet as a crutch until you figure out a good diet specific to your needs. Ideally you would go about three months to a year eating a very clean diet, as most results are not seen immediately. But if you're intent is to find out if you have sensitivities to certain food groups, this is one way.

Hello Morelia, your list of what you can't eat mirrors mine, though I have some additional items that I'm intolerant to - and none of the items show up in the allergy tests. I also can't eat fruit, processed food, ready prepared fruit, salad and vegetables, tinned vegetables and fish, smoked food night shade vegetables, turnips, onion ... and the list goes on. The way I found this out was like Morelia said, get down to a basiic clean diet (i.e. one you don't react to), then add one thing for 2-3 days and note the reaction of your body. If there is a reaction, go back to to your basic clean diet then after 2 weeks try the same food again and note the reaction of your body. If same intolerant reaction, you know that food is to blame. If no reaction that food can be added to the 'ok to eat' list - but be cautious, I have become intolerant to foods I was initially ok with (sweet potatoes).

Also Morelia do research the parasite blastocystis hominis. It is a common parasite that is usually killed off by stomach acid. It is thought that antibiotics affect one's stomach acid (reducing it) and allow this parasite to live. People with this parasite have difficulty digesting a wide range of foods and have food intolerance symptoms if they do. See US site national institute of health (nih) to find out more. I became aware of this parasite when a pharmacist who cured herself of hashimotos blogged about it. Her stuff has been an invaluable source for me in the quest to improve my health. The other thing I've done is switch from levothyroxine to a bovine natural desiccated thyroid that can be bought 'over the counter' (i.e. the internet) without a predcription. This helps me as I have no functioning thyroid and am a poor converter of T4 to T3 and NDT has T3 already in it.

Pam, I was, briefly, diagnosed with Hughes sundrome and was prescribed hydroxychloroqinine. I read the information leaflet and decided not to take it until I'd spoken to the consultant at my appointment 3 weeks later. The reason fo this is because it can cause the eye condition Macular Degeneration. The PIL said it is not normally prescribed for people who already have macular degeneration, which I have. If you are on this drug, check daily whether you are developing macular degeneration by using an Amsler grid (obtainable from opticians and on internet). The reason you need to check daily is that the 'wet' form of MD can cause blindness very quickly. There is a treatment but this can only halt the progression, not restore sight that has already heen lost. Hence the need to act quickly. See macularsociety wesite for further information. By the way, the brain automatically 'fills in' gaps in one's vision so it is not always obvious that an eye is losing patches of vision. So I urge you to check your eyes daily using an Amsler Grid and take prompt action (i.e. within 24 hours) if there's a problem.