All gone wrong on the anti candida diet - HELP NEEDED.

[Aileen]

Cant afford the GI doctor though - would run into the hundreds and then thousands to have the tests done privately.

I'm confused about the UK health system. Since you have government health care, as we do here in Canada, I was surprised to read that you would have to pay to see a specialist. I know all our systems are different but I just assumed that you would be able to be referred to a specialist by your GP and not have to pay to see him/her or pay to have a test like a colonoscopy done. Would you be able to get a colonoscopy ordered by your GP? Mine is sending me for one - yuck!

 

[nanonug]

Cant afford the GI doctor though

Isn't healthcare in the UK supposed to be "free"? Colonoscopy and upper endoscopy are pretty mainstream procedures. The rest you can do privately with no doctors involved.

 

[nanonug]

metametrix or Genova

Metametrix uses DNA PCR technology to identify buggers. Genova uses traditional culture-based methods. Let's say that Metametrix uses 21st century technology while Genova is firmly planted in the 20th century.

 

[justy]

I'm confused about the UK health system. Since you have government health care, as we do here in Canada, I was surprised to read that you would have to pay to see a specialist. I know all our systems are different but I just assumed that you would be able to be referred to a specialist by your GP and not have to pay to see him/her or pay to have a test like a colonoscopy done. Would you be able to get a colonoscopy ordered by your GP? Mine is sending me for one - yuck!

Well, theoretically it works like that! How it actually works is that the GP decides what you need to be tested and referred for, according to guidelines set down by the Govt. If you have M.E in the UK then your GP is told not to allow further testing. I was told years ago, after explaining my symptoms and with no examination or questioning on the GPs part 'you have ibs - heres a leaflet'

I recently went to my GP with a list of concerns and he said it was very useful but did not offer to refer me on. At present i am in the hands of the endocrinologist - then he might let me see the neurologist, then maybe the GI doctor. This all takes months, if not years - as he wont multiple refer me - in fact he could be in trouble for investigating me at all. Its such aa crazy system and the GP is king - as is NICE the body that gives advice to the NHS on what they should and shouldnt be doing.

Thanks for your interest! and replies

 

[Athene]

Well, theoretically it works like that! How it actually works is that the GP decides what you need to be tested and referred for, according to guidelines set down by the Govt. If you have M.E in the UK then your GP is told not to allow further testing. I was told years ago, after explaining my symptoms and with no examination or questioning on the GPs part 'you have ibs - heres a leaflet'

I recently went to my GP with a list of concerns and he said it was very useful but did not offer to refer me on. At present i am in the hands of the endocrinologist - then he might let me see the neurologist, then maybe the GI doctor. This all takes months, if not years - as he wont multiple refer me - in fact he could be in trouble for investigating me at all. Its such aa crazy system and the GP is king - as is NICE the body that gives advice to the NHS on what they should and shouldnt be doing.

Thanks for your interest! and replies

Justy,
I had this BS for years. As you say, the official UK policy is that people with CFS are not to be given any testing whatsoever. The only way to get the GP to test you for anything is to get your CFS diagnosis overthrown.
I did this by going to the GP and declaring that I do not believe CFS is a real illness, I thought the specialist who diagnosed me was a fraud (I was first diagnosed by Dr Wier who later went down the Wesley psychological route so I was fully willing to slag him off), there is no proof it exists etc. Nearly all GPs will be happy to agree with you about this. It's all about playing the system and you have to be comfortable with insincerity, obviously. I told the doc I felt all better now.

I got the CFS diagnosis (actually it was ME back then) wiped off my records and from then on I could get tested for lots of stuff. All of which turned out to be useless as they never figured anything out, but what the heck, at least I was tested! After lying low for 3 months I told him I had had a holiday somewhere that sounds quite germy (I think I said Indonesia) and had terrible guts and what could it be? After lots of infections and parasite tests, he moved onto other stuff. I presented a story that was manipulative and would basically force him to do the tests that I wanted.

I know this is fairly outrageous but I worked nearly all my life, often hauling myself into work when I was far too ill to go, and paid full NHS contributions and simply could not accept being denied access to medical services I was subsidising on the basis of guidelines which are unjustified, unjustifiable and probably a violation of human rights. Damit, Brasilians with AIDS can show up in Britain with no legal status and get full access to all the resources the NHS has to offer!!

OK, rant over.
Like I said, all their tests were useless in the end but who knows, maybe they could find out something useful for you?

 

[justy]

Hi Athene - sounds like the only approach that will work in the UK. I dont think it was the wrong thing to do at all. My GP is in a multiple surgery - all i need to do is see another doctor who doesnt know me and like you say, stear the conversation towards parasites (of course not actually saying the word - all the time playing the innocent) and likely i would get some tests. They never look back over my notes anyway so wont see the M.E/CFS diagnosis anyway. When i do finally get to see a consultant i never mention M.E - otherwise they dont take you seriously at all.

What with waiting lists - and having test results lost and forgotten in the system it all takes literally years. Someitmes it takes me months just to see the GP. I cant get there on my own and he only works 2 days a week - neither one being a day i can find help to get there for - and forgte home visits - even when i was severely affected.

Right thats my mini rant over as well!
Justy xx

 

[sianrecovery]

Hi Justy
I feel for you, I've had years of on off gut stuff, and I have an intestinal parasite called Blastocytosis. I also have a really addictive on/off relatinship with sugar - Klinghart is interesting on that - says the parasites tell us what to eat - scott forsgreen's site betterhealthguy has some good stuff on the gut. In terms of testing, I have done a fair bit, but
I do think the majority of the intolerance tests are rubbish - the only way to really tell is to eliminate one substance at a time, for at least a month, and see what happens when you reintroduce. Usually it will be worse before it gets better if you are intolerant to it when you stop. But I think intolerance is often no more than a snapshot of what the body can handle at that time. I have become deeply sceptical about most of the anti-candida diets, and I did paleo for years before I was told I had a parasite that would thrive with all fat - including 'good' ones.
My suggestion - take the pressure off. Really listen to what your body is saying. Follow your appetities for a a bit - not your cravings. You know the difference. Drink decent water if you can. If your body is saying eat bland, eat bland for a bit. You know sugar is not your friend, so minimise it. Witness the process without reaching for a cure - and see what your gut is communicating. Leave the supplements out - who knows what fillers might be pissing off your system? Try and calm down the nervous system as much as you in all the ways you know. Have a forensic think about the larger context around this episode.
Wow - I do sound bossy. I better take my own advice....

 

[orion]

I know this is fairly outrageous but I worked nearly all my life, often hauling myself into work when I was far too ill to go, and paid full NHS contributions and simply could not accept being denied access to medical services I was subsidising on the basis of guidelines which are unjustified, unjustifiable and probably a violation of human rights. Damit, Brasilians with AIDS can show up in Britain with no legal status and get full access to all the resources the NHS has to offer!!

The only thing that's outrageous is that you were forced to resort to such tactics in order to gain access to a service that you've already paid for. I'd have no qualms whatsoever about lying to my GP if it helped me to achieve my objectives. I don't regard her as being on my side. I regard her (and doctors in general) as being just another obstacle to overcome in my quest for a cure.

The human rights angle is interesting. I suspect that a great many commonly accepted medical practices could be challenged on human rights grounds. I wonder whether a group of ME patients could organise a class action and get these issue tested in court.

 

[taniaaust1]

Hi justy.. the Australian set up is very similar with you cant get tests unless or even a referal unless the doctor believes its needed. If one wants multiple referals to different specialists, you dont have much chance of getting that at all.

Crazily after 14 years of having this illness, I still havent had any stool tests done, nor a bowel biopsy, thou I do have the celiac genotype and have many severe celiacs in my family etc (that alone bothers me as the other test isnt 100% accurate and the only way to rule that out in me completely seeing Im of the celiac genotype..would be by biopsy).
Ive also had bowel bleeding for years and years and that and my bowel issues are still ignored thou I do have bowel cancer in my family.

I believe my health care has been so poor.. just cause I have a CFS diagnoses.

 

[Sparrow]

I would suggest trying taking away the sugar first on its own, without adding in the other things, just to make sure that isn't the cause in itself (I know for me, taking away sugars/carbs seriously messed with my neurotransmitter levels, which can certainly affect the gut). Similarly, it might be a good idea to give each supplement a test run on its own to see if you can isolate what's causing issues (I know it stinks, but it might be worth it). Hope you figure it out and get some more relief soon!

 

[justy]

I like all the suggestions to keep things simple. I have temporari;ly abandoned the diet and new supplements. It is slowly calming down. Even though i am resting i dont seem to be coming out of the crash very well this time. Its all made me a bit fed up.

Am going to try just the no sugar - and am trying to eat what feels right - so hard when perhaps parasites etc are trying to get you to eat a certain way. But i think i can tell the difference between what feels right and what feels like a craving. Strangely my old symptoms of extreme hunger pains, only alleviated by lots of food have come back - i definately associate this with a possible parasite as the last two times i tried mebendazole this cleared up.

Hope you are all ok today - Justy.

 

[rachel]

A bit more thinking aloud.

Oats do that to me too. I'm allergic to gluten but it doesn't blow me up the way oats do. I think it could possibly be simply that oats have a lot of fibre or starch that bacteria in the gut are very good at digesting, producing gases as a byproduct - the exact same effect as beans.
In the absense of expensive allergy testing we'll probably never resolve this one!

As justy said, aloe vera juice is great. I was recently advised to try that by my lyme doc. It is helping LOTS.

I also just remembered that Omega 3 oils help probiotic bacteria stick to the walls of the intestine (instead of moving on down into the toilet) so it may help to take those. You don't get instant results, but gradually things can improve a bit.
.

Hello Athene,

Oats can fight candida/fungus, at least in their raw condition, after the grains develop in water.

Regardind omega 3 oils, Does this information has reliable source?

 

[Boost]

have you been tested for blasto?

 

[justy]

Hey Boost - very hard to get testing for anything here on NHS - am awaiting H Pylori result. Candida diet completely abandoned and now have full blown gastritis. Am going to insist on further testing if clear for H Pylori - so sick of this battle when doctors wont help!

Thanks for the reply.
Justy

 

[Athene]

Hello Athene,

Oats can fight candida/fungus, at least in their raw condition, after the grains develop in water.

Regardind omega 3 oils, Does this information has reliable source?

Interesting about the oats. I used to eat lots of oats, but since getting a gluten allergy, they upset my tummy too much now.

The Omega 3 info is reliable. Apart from being what my doctor told me, it is also printed on my bottle of omega oils, which means there has to be scientific proof of it - supplement companies are very cautious about only making claims they can substantiate because they risk getting sued (or prosecuted?) otherwise.

 

[justy]

In case anyone reading this thread hasnt seen my newer thread, my H Pylori result was negative. Leaving me in a limbo land.
Justy.x

 

[Athene]

In case anyone reading this thread hasnt seen my newer thread, my H Pylori result was negative. Leaving me in a limbo land.
Justy.x

For what it's worth, I used to teach English to a microbiologist who was researching H pylori. She saids tests often come up false negative and it's worth getting tested several times. There are different tests as well, blood, poop, I cannot remember what else, and it is worth trying various ones.
My GP said the same thing and make me have 3 blood tests before he let me off and agreed I didn't have H pylori!
It's a class 1 carcinogen, so your doctor ought to agree with letting you retest if you still think it best fits your symptoms.

 

[paul80]

Justy do you take the activated charcoal? I had terrible stomach pain and that helped a lot.

 

[Liz-Melbourne]

Hi Justy,

My heart goes out to you sweetie, I hope you are doing a bit better since your last post on this thread.

I've been working on my own gut health for about a year now, and am definitely making progress. It is slow though, and there are many backwards/forwards stages along the way.

I think when anyone gets to the degree of ill health that a PWCFS does, it takes a lot of time to reverse. I guess it may be quick for the few lucky ones.

From the reading I have done, it would seem that if we can fix our digestive health, the battle is 90% won.

How to do that though.... that's the hard bit because we are all slightly different.

HOWEVER, I am nothing if not an optimist, and I say never give up hope! Some days that is all there is to cling to, and we all know just how difficult that can be when energy is in such short supply.

Anyway, I have some ideas, and I'd love to tell you what I am doing if you are interested.

Be kind to yourself, Liz

 

[xks201]

I think fixing your hormones and your gut with a non absorbing antibiotic for 2 weeks like xifaxan would do wonders for your sugar cravings and candida issues.