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

[justy]

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

 

[Beyond]

Looks like some of this might help. Ok one thing justy, you won´t be taking that metronidazole without repleneshing the good flora afterwords right? That could do more harm than good. Although it seems that med is not regarded as bad in that aspect.

Veggies in Spain are good! Organic food is 4x as expensive though, is that the same there?

 

[peggy-sue]

I ml = 1cubic centimetre.
A couple of tiny peas volume worth would be erring on the safe side. Or one big pea.
(but not as big as a dried sort of pea)

I first thought this thread was going to be about Dr. Myhill being attacked again!

 

[Ema]

1 mL is roughly equivalent to 1/4 teas. This would give you approx 10 mg of hydrocortisone.

If it makes you feel worse, it may be because the dose is too low and it is suppressing more than it replaces. But that more typically happens with low doses of the tablets rather than the cream.

I'll write a bit about my experiences with Flagyl later on; I have to go to cidofovir IV!

 

[heapsreal]

put the tube of cream in a glass of hot water to soften it up and make it runny. Then get a 10ml syringe with a plunt drawing up syringe. Once the cream has been in the tube sitting in the hot water for awhile then squirt out an approximations of 10mls into a small container, maybe the size of a milk bottle lid, then get the syringe with your drawing up needle on and draw it all into the syringe. The drawing up needles generally have a wider needle so makes it easier to draw stuff up. May need several 10ml syringes and do the process a few times.

So once u have a few 10ml syringe, when need u just squirt 1 ml on your foream or shoulder, this way is easing to measure out the 1ml u need. U ma be able to draw the cream straight out of the tube after heating it??

Can also buy the stuff cheap enough here in pill form with no script, your under a doc so i dont see an issue
http://www.antiaging-systems.com/224-hyderocortisone i think they are from the UK too.

cheers!!

 

[Plum]

If it were me I would deal with the most important issue out of that lot first. Take the prescribed treatment, agree to stick to it for x amount of time and then reflect before continuing to the next or stopping and moving on. I have not found multiple protocols beneficial unless I know I'm ok with them.

Food for road trip to Spain - I have been where you are. I would suggest you go raw food. I don't know your exact diet but for me this is: organic veges to make salad, cheese, dried organic meats, fruit. If you can eat eggs, quiche is a good idea - crustless. Will keep for about 24hrs in a cooler bag with some ice blocks. Also freezes well. Organic baby food = jars of fruit etc can be ok for snacks. Seeds and nuts etc. Full fat yoghurt makes a good snack.

1 idea about you needing to cook separate food for yourself and family - don't! They can eat the same as you with some additions. Hard to suggest as I don't know what you guys eat. My partner eats red meat and I don't so he makes his own meat dishes and we share salads, veges etc. When I was younger my Mum did weight watchers - I ate the same as her but just more!

 

[justy]

Thanks for all the great tips and suggestions - ingenious way of measuring @heapsreal

@peggysue - lol you really made me laugh - hopefully Dr Myhill wont be before the GMC again anytime soon, and hopefully the restrictive diet wont make me want to attack her!

@Beyond - i'm not worried about being in Spain - plenty of fresh vegetables and fruit and nice fresh fish - it is the journey i am concerned about - 4 days travelling there with 3 nights in France and Spain and 2 x nights back - wish i wasnt afraid of flying it would be so much easier and the way i feel right now less stressful!

Re good flora, Dr M wants me to do Kefir again - i can grow it from a sachet she provides and its ok, just extra work and once more difficult with travelling - probabaly wont be able to take it wiht me which means a break for a month - maybe someone could recommend a good probiotic to take hwile away? i have had terrible systemic candida in the past so not keen on the antibiotics, but am determined to stick with what has been suggested, otherwise why throw all that money at appts?

@Plum - thanks for the food suggestions, some good ideas there. Due to being a veggie that eats fish it is pretty hard, technically not allowed to eat any beans or lentils either. Apart from fish, vegetables, nuts and berries and eggs im not sure what i can eat. This is whay its so hard with the family - they dont eat fish and so will eat for example lentil dall with rice and chcikpea curry - none of which ic an eat! many veggie staples, veggie chilli, rissotto, shepards pie, cauliflower cheese, baked potatoes are completely out for me - i am going to have to start to eat a whole new way, which is not going to go down well with a 10 year old - i will adapt what i can, but basically they are eating in a wholedifferent way to what i will be able to do. Without meat it is very hard. I will rpobably eat small amount of carbs (potato or rice or beans) in the evening on some days.

The wierd thing is alst time i tired this diet the food - lots of fat, veggies and protein made me feel physically sick - i honestly couldnt face another egg or pile of stri fried vegetables without wanting to throw up. Lets hope it's better this time around, plus i have the incentive that i am still gaining wieght like mad and need to lose some - oh yeah and hopefully feeling better too!

Take care all,
Justy.

@Ema - i hope the iv goes ok - would be good to hear about your experiences with Flagyl.

 

[peggy-sue]

I know my brother has a lovely recipe for a cashew nut loaf.
Will I winkle it out of him?
(he's very co-operative with recipes. )

I'm sure, if that's something you can eat, your family would enjoy it too.

 

[Plum]

@Plum - thanks for the food suggestions, some good ideas there. Due to being a veggie that eats fish it is pretty hard, technically not allowed to eat any beans or lentils either. Apart from fish, vegetables, nuts and berries and eggs im not sure what i can eat. This is whay its so hard with the family - they dont eat fish and so will eat for example lentil dall with rice and chcikpea curry - none of which ic an eat! many veggie staples, veggie chilli, rissotto, shepards pie, cauliflower cheese, baked potatoes are completely out for me - i am going to have to start to eat a whole new way, which is not going to go down well with a 10 year old - i will adapt what i can, but basically they are eating in a wholedifferent way to what i will be able to do. Without meat it is very hard. I will rpobably eat small amount of carbs (potato or rice or beans) in the evening on some days.

The wierd thing is alst time i tired this diet the food - lots of fat, veggies and protein made me feel physically sick - i honestly couldnt face another egg or pile of stri fried vegetables without wanting to throw up. Lets hope it's better this time around, plus i have the incentive that i am still gaining wieght like mad and need to lose some - oh yeah and hopefully feeling better too!

@justy I completely understand. It does sound very hard. At the moment I'm on low carb Paleo with no eggs, sugar, tea etc. It is hard! You could do big raw salads and tinned fish for your drive to Spain? We did a 2/3 day drive across Europe last year. At least if your family can buy food along the way it may be not so difficult?

What do you eat for protein then? Just eggs and fish? It is hard. I have slightly more options than you as I can eat chicken and pork but no eggs. I often sit here hungry. Juicing? Smoothies? Good luck and I hope you don't feel sick this time around

 

[maryb]

I know my brother has a lovely recipe for a cashew nut loaf.


cashew nuts!!!!
and that'd be me at A & E.........

 

[bertiedog]

One reason why you felt sick with the extra protein and fat might be that you didn't have enough digestive enzymes or betaine hcl to digest it. That shouldn't happen if you follow her suggestions. Nutri do a very good digestive enzyme called Nutrigest, I take one with every meal and add in 300 mg betaine too and they have made a big difference to my digestion.

I agree not to take any thyroid meds until your adrenals have support. Are you supposed to do the 10 ml h/c all at once after breakfast or is it half at breakfast half at lunch.

Personally I wouldn't hold out too much hope that it will be sufficient. Normally one would take it 3 times daily, the higher dose on waking, half again lunchtime and then a small amount late afternoon.

If you were to take all 10 in one go on waking you might at least get an idea as to whether you body actually likes the extra h/c. I know that when I first had to take h/c I needed 12.5mg in the mornings to make any difference but I had been sick for a very long time. I also took 10 mg lunchtime and 5 mg late afternoon, that is how much my body needed and it hasn't changed in over 12 years except than now I do better on a longer acting steroid which is Prednisolone 6mg with just 2.5 mg h/c as a top up late afternoon.

It will probably take some experimenting to get what is right for you.

Metro can be a difficult drug to tolerate, it gave me very bad yeast issues both in my gut and on my tongue. I hate that drug but to be honest antibiotics just don't agree with me anyway but we are all dfferent.

Good luck with your plan.

Pam

 

[justy]

I know my brother has a lovely recipe for a cashew nut loaf.
Will I winkle it out of him?
(he's very co-operative with recipes. )

I'm sure, if that's something you can eat, your family would enjoy it too.

That sounds great!

 

[justy]

@bertiedog - yes i think we will have to see if the HC is enough, as for the metronizadole i am not that keen on any antib's but this one for me is the worst. 5 years ago i had pneumonia and then a lingering lung infection for nearly a year - i eventually took 10 courses of antibiotics in 12 months and Metro was the most brutal of them all - made me very sick. Dr M felt that i must listen to my instict on all of this in terms of how long to take it for etc.

Also interetsing to hear about the digestive enzymes and the extra proetin making me feel sick before. I'll make sure i get some of those down me.

@Plum it's good to hear of your experiences with driving across Europe, i wont personally be doing any of the driving - your suggestions of salads and tinned fish is good - i guess i will need to be organised. I dont eat any meat except fish, but i do eat eggs - are you allergic to them?

 

[Sushi]

@justy

Flagyl was a really bad drug for me--one that really set me back. I wonder if there are alternatives? But then some people do well with it, yet....some of us have bad experiences. Guess it is one that once you start it you have to complete the course? No trial dosing?

Sushi

 

[Insomniac]

Well I have written about my experiences with Dr Myhill before. They were v.negative. I suggest that if you feel bad in any way on her diet or hate eating it, then stop. She is not a qualified dietician.

She used to do the pear and lamb diet. The only foods on that were pear and lamb. It harmed her patients.
Then she did a super heavy elimination diet on me that allowed a bit more than pear and lamb. It harmed me.
...So now she has moved to Paleo.
Don't trust any of her diets. She doesn't weigh patients to see if their weight is O.K, she has no dietry qualifications, she is not responsible in that area at all...This is my opinion from my experience.
My advice is: Eat what you feel is healthy and what makes you feel strong and ignore her dietry advice.
I don't know how to advise on the other issues.

 

[Plum]

@Plum it's good to hear of your experiences with driving across Europe, i wont personally be doing any of the driving - your suggestions of salads and tinned fish is good - i guess i will need to be organised. I dont eat any meat except fish, but i do eat eggs - are you allergic to them?[/quote]

Due to a lot of gut issues I have realised I can't eat eggs. I actually feel better not having them so that's good.

Yes, organisation is key. I have a box with a lid which fits under the car seat - keep knife, chopping board, herbs, spices etc in it. Can make a salad anywhere. We had to shop once a day for the dog as he's raw fed so would pick up organic fruit and veg then. But it is difficult. In yr position I would take crustless quiche with me and some hard boiled eggs. I noticed some of the big French supermarkets had fancy seafood ready cooked so you might get lucky. Another option would be staying at places with a kitchen on yr way down. Don't know if you know of airbnb?

 

[Ema]

@justy

Flagyl was a really bad drug for me--one that really set me back. I wonder if there are alternatives? But then some people do well with it, yet....some of us have bad experiences. Guess it is one that once you start it you have to complete the course? No trial dosing?

Sushi

Tindamax is the usual option and it is generally much easier to tolerate.

Flagyl was hard on me as well. It's the only abx I've ever had to discontinue due to side effects and I've taken a lot of abx.

 

[anne_likes_red]

...Oh I remember the pear and lamb diet. (DR Richard Mackarness who devised this elimination diet was a colleague of a doctor I worked for in the UK). Nothing but pear, lamb and spring water for five days...then a re-introduction of one food at a time and IIRC pulse measurements taken prior to, 5 minutes after and an hour after introducing each new food?
The only really good thing that did for me, was show really clearly that I felt so much better avoiding wheat. And even better the longer I eliminated it. This was 20+ years ago so I'm grateful to have had that relevant (to me) info so early on. Back then hardly any doctors were mentioning the possibility gluten might be a contributing factor to inflammation and a trial of avoidance might be worthwhile.

...Justy you're vegetarian I think so enough of the lamb talk!
I do best without grains, but there's a fermented rice (sounds dodgy but it's not) protein shake product that has a similar profile to whey protein and I used this when travelling a year ago. It's quite high in protein so it gives you a good start to the day (if you're the type who does best with that kind of breakfast). It's just really easy to mix up and I really hear you when you say you'll be preparing food for the family and they may eat slightly differently....so I'm just mentioning it because I personally found it super-convenient (as well as sustaining) when I was doing something similar.
I'm not sure of the rules in linking to products/brands so I'll PM you - just in case it's helpful and maybe meets your criteria.

Southern Spain for a month! Sounds wonderful! Best with that...and with the new protocols.
Anne.

 

[justy]

I did tell Dr M that i had problems with metro (flagyl) before, but she still wanted to prescribe it. I am aware that some people get worse on her advice and others do get better - ia m in touch with both of these groups of people, so its hard to make decisions.

So far the on;ly things that have helped have been pacing a nd a few limited supplements, and even then they dont work all the time. I found Dr S didnt help me - in fact got worse and i promised myself i would stick with his plan for 6 months - he wasnt all wrong, but unfortuantely like most of us here i seem complicated.

Have decided to start on diet, kefir, betain HCL, digestive enzymes and antibiotics this week. Then i have a good 6 weeks before leaving to see how i feel. If the antibiotics start to really do me in i will ask to change to a different type.

Sometimes i do wonder at my own sanity. I'm convicned that antibiotics and steroids helped my intital decent back inot such poor health 5 years ago, after 8 relatively good years. I swroe i would never take either of them gain unless absolutely necessary. I swore i would stick with herbs etc, but 3 years of herbs only slightly helped me and now i have come full circle back to convecntional drugs.

I just want to feel a bit better, like most here desperate to try anyhting more or less.

Take care,
Justy.

 

[xchocoholic]

I tried flagyl too and had to stop it due to uncontrollable runs. Maybe we just can't tolerate that one or maybe we need a tiny dose. I do better with tiny doses and liquids.

Imho, you still need to make all changes slowly to see how you react. Any diet changes can be hard on the body but I heard it's always rough going from vegetarian to eating meat.

I failed the hcl test that was on this site. Of course I've forgotten how to do it. Digestive enzymes, including the natural ones found in papaya, mangos and pineapple help me digest meat. I use creon, candidase and virastop supplements. Ground papaya seeds are good too and taste a little like pepper.

Good luck. I understand how frustrating all this is. X