New line of attack from Dr Myhill - what to start first?

[maryb]

Pear and lamb wasn't meant to be a permanent diet, its used as those 2 foods usually cause the least sensitivities. You start on those and then introduce other foods one at a time, its the best way for identifying major problems. It takes a lot of patience but can be very successful.

Alternatively people are advised to start a couple of foods they know are safe for them, for me it was chicken and brocolli.

@justy
I too had a problem tolerating flagyl so think its a question of just trying it. As you say you have some time to try stuff before you go. I bought some Trienza enzymes, brilliant - having used other brands I couldn't tolerate, they can make such a difference.

Your holiday sounds lovely - I'm sure you'll benefit from the break.

Dr M will do her best for you - no ME doctor in the world can give guarantees on whether treatment will work. We'd all be well if that was the case, but it can't stop us trying. I've spent £0000s and am still sick.
I dearly hope you improve.

 

[Helen]

Hi, i recently had a phone consult with Dr Myhill and she has said that from my test results she thinks there are 3 areas that need to be adressed that we can see so far (as well as mito problems and antioxidant issues from past testing.)

1. Treating upper fermenting gut - my stool test from genova was not particularly interesting but she feels it points to fermentation in the upper gut. For this she has prescribed metronizadol: 2oomg a day for two weeks folloewd by 400mg a day for two weeks followed by 400mg 2x daily then onto a maintenance dose of once a week. At the same time to do a no carb stone age diet (as i am a vegetarian i am going to have to eat some) and add in betaine Hydrochloride starting with one with each meal.

2. Adrenal issues - my cortisol saliva results show normal waking levels and then very low for the rest of the day. My DHEA is very low. Dr Myhill thinks my normal waking cortisol could be being caused by night time hypoglycaemia so is probably not a true reading. She has prescribed Hydrocortisone cream 1ml a day plus DHEA.

The HC cream says it is 10mg per 1 ml, the tube has no way of measuring 1ml and i cant work it out either - has anyone got any ideas on how to measure it out? also should i change the places i rub it on my skin to avoid thinning skin? where is the best place? has anypone else found it useful?

DHEA - she has supplied a tub which looks like a supplement bottle - there are no specicfic instructions for me but the tub says 1 a day, 1 tab = 10mg. Is this the nomal amount to take - can i expect any side effects from this and when is a good time of day?

3. Thyroid - my test results are in normal range but TSH a bit high and T4 low normal. I have tried levo with no success and then Armour prescribed by Dr Skinner which was at first good then i became much much more ill on it and since stopping have still not got back to baseline. Dr M suggests no more thyroid hormones until at least the spring next year - until my adrenals are a bit stronger (presuming the DHEA and HC cream and gut stuff help)

4. Continue with COQ10, Selenium , vit c and Magnesium and minerals and to add in Carnitine - my result was exceptionally low for this on the test and she described my cell free DNA test as one of the highest she had ever seen.

Now i am a little stumped as to wether to go all out and do all at once, or whether to do a bit at a time. In the past i have done thigns very slowly as i tend to react to lots of things for no good reason. On the other hand doing this means i have never been able to complete a protocol as i have to keep stopping and starting things to work out what is what (so damn frustrating!)

Would it be better to know what is helping before going on to the next thing or does my body have a better chance if i throw everythign at it at once?

Another complication is that i am going to southern spain for a month in 6 weeks time and will be taking a few days to drive there (very very difficult diet wise t find things to eat when there is no kitchen available or health food shops etc to use, when desperately hungry there is nothing to eat available in a shop without cooking it) Is i worth doing the diet and antibiotics until then and then easing up on it while away or when travelling?

I really really want to give this all a good trial to see if it will help, but am aware that even though it doesnt sound hard, when you are ill and so low on energy it can be very dofficult just to get through the day without worrying about supplements, restricitve diets and the like.

ps i have a family that i have to cook for so i have to now do 2 lots of cooking for me and for them.

Is this new protocol going to help?
what do you think?

cheers, Justy x

Hi Justy,

In a way good to see that you have several untreated issues. When treated you will probably feel much better as I did after a proper treatment for the adrenals and the thyroid. I have no experience of treatment based on a stool test.

I support taking the vitamins and other supplements. Without enough selenium the thyroid will not work (and protein, iron, B12 and iodine). Did Dr. Myhill test for thyroid antibodies? Important to see if your thyroid is under attack (commonly by gluten or mercury from amalgam). Also a free T3 lab test should be done. T4, as in synthetic thyroxine has to be converted into the bioactive T3. A low T3 might reflect problems with the converting from T4 to T3 or too low T4 or...
If your thyroid is not working fully, or there is a receptor problem, this can give lots of symptoms, so this is a base for all treatments. The books "Stop the thyroid madness" and "Your Thyroid, and how to keep it healthy" are really good.
My own experience is also that the adrenals need to be supported first, as Dr. Myhill and other knowledgable doctors tell. Dr. Rinds temperature curve is a good help for many to evaluate hormonal treatment. A lack of thyroid hormones for a long time weakens the organs and how they work; heart, liver, adrenals stomach etc. A low thyroid might cause low HCl and all other functions important for a good digestion.
I would not loose more time, but introduce supplements slowly and write down the effects. It is a long time project though. I learnt and experienced that you can make progress up till two years after starting with proper thyroid treatment.

Hope you will have a nice stay in Spain! It has been written that people with a low thyroid can only make use of vitamin D from the sun, not from food. Sorry, I can´t find the source again, but at least it was written by a doctor. Hopefully you will feel much better soon!

Helen

 

[Crux]

Hi Justy;

I remember that the symptoms you listed after having trouble with the thyroid meds, really seemed more like iron deficiency than anything else. ( But the lowered T4 was confusing. Maybe that was part of the adjustment period.)

I hope that the HCL will help you absorb the iron better. I've read that high calcium foods and the phytates in grains, along with tea, can reduce iron absorption, so maybe they should be taken separately from the iron.

I hope your trip is completely non-stressful, and fun,even!

 

[justy]

Thanks everyone - not got the energy today to reply individually. Just to say tho that i will not be starting to eat meat on this diet - i am attmepting stone age with just fish and veggies, nuts, seeds and eggs (yikes!)

The trip to spain is supposed to be fun! we are going to see if the drier, sunnier weather will help at all, although a month really isnt long enough - also we are staying 100m from the beach and i always feel better by the sea. Usually if i stick to my wheelchair a lot i can enjoy myself.

I did a test for thyroid antibodies about 3 years ago and it was negative.

All the best,
Justy x

 

[peggy-sue]

Wee brother has sent me the recipe.

It's great for a veggie Yuletide dinner.

It's one I've made before too. It works best in a gas oven - it's a much moister heat.

Depending on how efficient/violent an electric oven is, it is sometimes best cooked with a tray of water in the oven as well, sort of like a bain-marie, just not sitting in the water.

(My oven is very violent - I have to cook stuff way below the recommended temperatures, and it can dry stuff out if I'm not very careful)



Cashew Nut Roast

50g\2oz Butter
1 large onion sliced
225g\8 oz Unroasted Cashews
100g\4oz bread
2 garlic cloves
200ml\7floz water or light veg stock
Salt and pepper
Nutmeg (or spices of choice)
1 tbsp lemon juice

Stuffing
100g\4oz bread
50g\2oz butter
1 small onion grated
1\2 tsp each of thyme and marjoram
25g\1oz parsley chopped

Oven 200C\400F
450g\1lb loaf tin lined with a strip of greaseproof paper
Grease with some of the butter

Gently fry the onion 10 min in most of the remaining butter but don't brown

Grind up cashews, bread and garlic.
Add to the onion and butter
Add s&p, water\stock, nutmeg and lemon

Mix all stuffing ingredients together.

Layer half the cashew mix into the tin, layer on the stuffing and then the remaining half of the cashews.
Dot the top with leftover butter.

Place into something to catch any oozing butter.

Bake 30 min or until lightly browned - cover with foil if browning too quickly.

Cool for a few minutes, loosen edges and turn out

Decorate with parsley and lemon slices.
Server with bread\cranberry sauce etc.