Breakspear Medical in the UK

[brenda]

Hi Brenda, what protein have you found helpful for your leg muscles? thanks

Hi frou

I am using Dr Mercola's pea protein powder which is organic from iherb. I have run into problems though with my new supplements - hot flushes and adrenal surges on waking so I have cut them and have to start again.

 

[froufox]

Hi Brenda, thanks for that I think i might have tried that one actually, or perhaps it was another brand of pea protein from iherb, ill have to check. Sorry you've having problems with your new supps, how frustrating! I hope u manage to figure out what is causing these recent issues.

 

[maryb]

I also tried pea protein, couldn't tolerate it - then in later years found pea was on my list of intolerances.

 

[brenda]

I think it is the pea protein and the Ribose. I might look at hemp protein.

 

[Little Bluestem]

Have you tried rice protein?

 

[brenda]

Have you tried rice protein?

Hi Little Bluestem

I am rather cautious about using processed rice products though I am eating organic brown rice cooked in copious water, due to the arsenic scares.

 

[Little Bluestem]

The rice protein powder I have is made from organic rice, I assume would be safe. Doesn't the arsenic come from some sort of pesticide?

 

[Valentijn]

The rice protein powder I have is made from organic rice, I assume would be safe. Doesn't the arsenic come from some sort of pesticide?

Usually it comes from the natural arsenic in the soil in the region. Hence rice from some areas is safer.

 

[brenda]

The rice protein powder I have is made from organic rice, I assume would be safe. Doesn't the arsenic come from some sort of pesticide?

A lot of arsenic comes from previous pesticide use especially in southern cotton growing areas of the US. Some comes from chicken dung used for fertilizer. The safest areas include California but as I said, it is advisable to soak the rice and boil in copious water. Whole grain rice contains the most arsenic. The protein powders are a concentrated source of the food stuff used therefore I am more cautious.

 

[brenda]

Hi

I have just returned from another visit to Breakspear - it's my third so far. Whilst I was being examined by Dr Monro , I suddenly became a medical emergency with a bp of 220 syst.. I was popped into a hospital bed with a nurse taking my bp every few minutes. It came down in half an hour.

I mentioned today in a telephone consult with her, to discuss pathology results (mostly normal but high alk. phos. and Gamma GT) that I think it might be the iodine in seaweed in sushi as my cholesterol has gone up too. I have read many times that stimulating the thyroid causes increased autoimmune attacks with Hashi's so therefore leading to increased hypothyroidism. This leads to increased bp and cholesterol but she does not accept this. I think she is wrong.

Dr Monro wants me to come down for three days so that the immune therapy can be carried out. I am really scared to have this done now since I heard someone here say they were made worse. If anyone reading has had some experience of it please will you let me know thanks.

 

[Little Bluestem]

Anyone?

 

[Crux]

Hi brenda;

One likely cause of elevated alkaline phosphatase and GGT, is gallstones or some biliary tract obstruction.
http://www.webmd.boots.com/a-to-z-guides/liver-function-tests

I agree that the thyroid should be checked. I believe that thyroid dysfunction is involved with ME/CFS.
High cholesterol and high/low BP can be some of the signs of hypothyroid.

 

[bertiedog]

When my thyroid had stopped working well because I was unable to tolerate my usual thyroid medication my cholesterol went up to 7.4 but once I managed to get back up to 2 grains dessicated thyroid it dropped to 4.7. This happened over about 4 months. My cholesterol has stayed around this level as long as I stay on this dose of thyroid meds.

I ordered the Nature-Thyroid myself online because the National Health doctors here in the UK won't give it to us. However I also have to take a steroid to support my adrenals otherwise no way could I tolerate the thyroid meds and I am lucky in that my GP gives me this (long story but thinks I might have had Sheehans Syndrome).

Maybe if your thyroid was treated you wouldn't have the immune system problems? It would be much cheaper than going through the Breakspear treatments which have no guarantee of working. I have been there myself on 2 occasions and they did help me in getting an oxygen concentrator but apart from that nothing there helped me. In fact I am doing really well having started a B12 spray from Dr Myhill that has given me all my energy back so that I am hardly having to use the concentrator now.

Pam

 

[brenda]

Crux

Thanks, I do have some biliary tract obstruction and will look into treatments apart from the digestive enzymes I am taking. Alk. Phos. has been raised for quite some time. I also know I have been hypothyroid for many many years and tried dessicated thyroid for a while then had to take only T3 but still could not tolerate it. I am too scared to take hydrocortisone due to having Lyme Disease and hearing of too many people who got a lot worse on it.

bertiedog

Thanks Pam, but I don't pay for my treatment my PCT agreed to fund me. I claim that my illness started when I was hospitalised due to mercury poisoning from teething powders so I don't know how much that influenced my gp to agree. It's quite worrying when I hear more and more people say they have not been helped. When I was there last year, there was a couple of girls from Italy and a couple from Germany staying

They have decided to do more testing which I am pleased about as I felt that the extent of my sensitivities was not being acknowledged and has now been shown since I have reacted badly to most of the supplements I was prescribed. B12 is a problem for me due to my MTHFR but I am managing to take small amounts.

 

[bertiedog]

bertiedog

Thanks Pam, but I don't pay for my treatment my PCT agreed to fund me. I claim that my illness started when I was hospitalised due to mercury poisoning from teething powders so I don't know how much that influenced my gp to agree. It's quite worrying when I hear more and more people say they have not been helped. When I was there last year, there was a couple of girls from Italy and a couple from Germany staying

They have decided to do more testing which I am pleased about as I felt that the extent of my sensitivities was not being acknowledged and has now been shown since I have reacted badly to most of the supplements I was prescribed. B12 is a problem for me due to my MTHFR but I am managing to take small amounts.[/quote]

That's good you don't have to pay for any treatment. I just wanted to say that from my experience when somebody has all sorts of sensitivities to things its due to very weak, barely functioning adrenals. I used to be like this before I started on the Prednisolone but now I don't react to hardly anything.

Taking adrenal and thyroids meds gave me back my life it really isn't anything to be scared of and I am not at all I believe all the scares put out about the dangers of steroids if you really need them. All you are doing is putting back what your body would normally do. Actually being scared of trying stuff is another adrenal symptom I remember. The steroid was the only drug I had ever taken that my body wanted more of, usually I could only tolerate tiny amounts or not at all of all other drugs.

Pam

 

[brenda]

Do you have Lyme Disease Pam? A suppressed immune system is fatal if you have it. There is a reason why the body downgrades adrenal function and we have it for different reasons. The so called scares I take notice of are from people who have Lyme and who have had terrible adverse effects from even under 20 mgs of HC. I was on a forum with one woman who was encouraged to take more and more of HC as they said her body needed it and she must have died, after having gone into A&E with no success of help, and in the meantime her head kept on swelling bigger and bigger. Then we heard no more from her. But many more have reported that they had a serious relapse after trying it.

 

[bertiedog]

If one tried h/c at low doses you would get some idea as to whether it suited you or not. At one stage I was told I did have borrelia so I do know lots about it. Of course not everybody needs h/c but for sure some people do but often are too scared to try because there are so many bad stories out there. Of course it is a choice we all have to make and I am very glad I made that choice which gave me my life back. I do believe in getting informed and obviously do any trial safely, go slow and low is my motto.

Pam

 

[bertiedog]

Just had a thought Brenda have you ever had done the 24 hour saliva test for cortisol and DHEA because without any doubt this will tell you what is actually happening in your body. You can order one yourself through Genova Diagnostics although Breakspear should be able to arrange this too. My experience of Breakspear was that they were not very well up at all regarding the problems of the adrenals/thyroid in this illness.

Pam

 

[brenda]

Pam

Yes I have had the saliva test done through Dr Peatfield years back. He said take HC. I hear of people who take a tiny dose and still have a relapse. What I am working on is improving my whole system through diet and methylation vitamins. I took pregnenolone for a while but ran into trouble with it. I am very wary now of hormones. My way will take longer no doubt. Yes true I found the doctor I see knew little about thyroid and adrenal function.

 

[bertiedog]

Pam

Yes I have had the saliva test done through Dr Peatfield years back. He said take HC. I hear of people who take a tiny dose and still have a relapse. What I am working on is improving my whole system through diet and methylation vitamins. I took pregnenolone for a while but ran into trouble with it. I am very wary now of hormones. My way will take longer no doubt. Yes true I found the doctor I see knew little about thyroid and adrenal function.

Yes this is what I have done too and now really can hardly say I have too many problems. Every day I can now walk around 2 to 3 miles a day in total but still have to remember to pace my activities. Hope you get there too.

Best Wishes
Pam