A UK doctor of some sorts....?

[justy]

Justy, did you have no luck with Myhill?

Hi Sporty - inititally her advice to rest a LOT was very helpful, but to be honest after two years of trying her protocol I hadn't even managed to add in half of the supplements she prescribed as I was so sensitive to everything and most things were making me worse. The most help I have had was from a herbalist, but now I cant tolerate herbs at all.

I spent a lot of money on Myhill tests that didn't have any relevance and no tests to look at chonric infections etc. I cant do Paleo as I am veggie and allergic to eggs, I cant do juicing as I don't tolerate uncooked vegetable fibres. I couldn't do HCL for low stomach acid as it turns out I have EDS III and most likely a lax sphincter rather than low acid. Si I don't really fit her mould - she is a lovely lady though, but I found her phone consults just frustrating as she repeats the same things over and over again.

 

[ukxmrv]

@Sporty, I think you are too late for a ME or CFS doctor in the UK. There used to be a few but now most have retired or been forced out of treating patients by the GMC. There don't seem to be any new ones to fill the gaps.

Couple of other possibilities. Prof Brostoff for allergies. I am not sure what treatments he can offer as he now longer has a NHS clinic but he may be able to point you in the right direction for anything that is left.

The London Homeopathic Hospital does EPD allergy work.

Dr Enlander comes to the UK once or twice a year to see patients. You could also maybe have a Skype consultation with him in New York.

Just a few ideas. Things have deteriorated badly for ME and CFS treatment in the last 10 years.

 

[Sporty]

Do you have an idea what precipitated or caused your initial illness or was it a slow onset?

I had such an acute start to mine. It would make sense, if i had the money, that I should start by looking into chronic EBV (as until coming on here I didn't know one could have this lingering and reactivating). Plus possibly Lyme or the cat scratch infection (forgot the name). They are more likely possibilities due to my history and exposure - say if I had one or more, I would probably feel worse as a result due to the extra burden of my body trying to deal with those issues.

So KDM would probably be a good bet in that respect as he deals with those issues. Thing is, I get the impression (just my impression from hearing other's reports) that diagnosis doesn't necessarily mean treatment is easy for UK patients. If one wants to get treated over there that's a massive expensive/commitment and requires a certain level of ability to travel, but to get treated over here seems complex and expensive too.

I think what complicates things as well is knowing I've added more health problems as time goes on plus more symptoms... So in my mind it becomes hard to sort the one from the other. I find it complicated to attribute symptom to the which disease or problem as there is potential crossover.

What treatment did you have at Breakspear? Was any of it helpful?

hi there

well, i lived totally out of balance back then. i guess diet, drugs, stress at work etc, long hours and partying at weekends. i stood no chance! I don't blame anyone for that but why is it so near impossible to get well again tho!

Cant the NHS help you with the EBV, if it is the cause? But yeah, the thing with going the KDM route os the known on going expence you will have to face. I dont think i can do that again....without guareentee of a postive outcome.

I had a consultation at the Breakspeare then some drips and then i went onto some allergy desensitisation stuff. Didnt get better at all from all that. I chatted to guys there who had spend like 25K to date. I was shocked!!

 

[Sporty]

Hi Sporty - inititally her advice to rest a LOT was very helpful, but to be honest after two years of trying her protocol I hadn't even managed to add in half of the supplements she prescribed as I was so sensitive to everything and most things were making me worse. The most help I have had was from a herbalist, but now I cant tolerate herbs at all.

I spent a lot of money on Myhill tests that didn't have any relevance and no tests to look at chonric infections etc. I cant do Paleo as I am veggie and allergic to eggs, I cant do juicing as I don't tolerate uncooked vegetable fibres. I couldn't do HCL for low stomach acid as it turns out I have EDS III and most likely a lax sphincter rather than low acid. Si I don't really fit her mould - she is a lovely lady though, but I found her phone consults just frustrating as she repeats the same things over and over again.

Ha! thats exactly how i felt after our last phone consultation!! she was just repeating herself, at the cost of £90 for half an hour! Thats not good enough. I emailed her recently to ask if she could help me further-as im stuck again- and all she did was forward my email on to Rosie to advise a consultation. I said i don't want to spend another £90 to find out if her reply is yes or no! she's turning into a money making outfit, i fear. She blames all my symptoms on lack of energy production but after 3 years im still with symptoms.....better in some ways yes but still ill enough to need help.

i'm really questioning if any of them have an answer to chronic illness.....

 

[Sporty]

@Sporty, I think you are too late for a ME or CFS doctor in the UK. There used to be a few but now most have retired or been forced out of treating patients by the GMC. There don't seem to be any new ones to fill the gaps.

Couple of other possibilities. Prof Brostoff for allergies. I am not sure what treatments he can offer as he now longer has a NHS clinic but he may be able to point you in the right direction for anything that is left.

The London Homeopathic Hospital does EPD allergy work.

Dr Enlander comes to the UK once or twice a year to see patients. You could also maybe have a Skype consultation with him in New York.

Just a few ideas. Things have deteriorated badly for ME and CFS treatment in the last 10 years.

Hey, thanks for these suggestions!

Does one just call up the homeopathic hospital and get an appointment?

 

[CantThink]

Cant the NHS help you with the EBV, if it is the cause?

I don't think so. They are useless for chronic Lyme too as far as I'm aware - I think they don't acknowledge it as a problem or something along those lines. I think the problem with the NHS lack of acknowledgement is probably due to the chronic nature, rather than if it was acute, and not accepting that chronic cases can cause serious issues.

But yeah, the thing with going the KDM route os the known on going expence you will have to face. I dont think i can do that again....without guareentee of a postive outcome.

I totally understand. I feel the same - especially as to do so in my case means using someone else's money... with no guarantee. I don't feel comfortable doing that. It would just make me feel pressured to get better (like even if I wasn't getting better lol) and guilty if it didn't work.

I had a consultation at the Breakspeare then some drips and then i went onto some allergy desensitisation stuff. Didnt get better at all from all that. I chatted to guys there who had spend like 25K to date. I was shocked!!

That sounds similar to what I've heard. A lot of money but not necessarily any gain. It's a real shame.

There are some things you can address yourself - like looking into mast cell issues (as you mentioned allergies - there's quite s lot of info on here about that if you search/look), thyroid and adrenal function (thyroid UK forum is good for that), vitamin and mineral deficiency or imbalance, and options like LDN which you can trial (you can do a phone consult in the UK or source it yourself from abroad - again plenty of info on this forum about it).

 

[CantThink]

P.S. you can run tests yourself via Blue Horizons Lab - they do some where you can finger-prick at home and others that can be done at your local Spire or Nuffield hospital, or failing that you can go to London if you are able and they'll do a blood draw.

 

[Sporty]

P.S. you can run tests yourself via Blue Horizons Lab - they do some where you can finger-prick at home and others that can be done at your local Spire or Nuffield hospital, or failing that you can go to London if you are able and they'll do a blood draw.

Oh cricky ive been through all the above and then some!! I've done the thyroid and adrenals thing. The mitochondria etc. that's why I need someone to help me through this impasse. It's not good me having tests done and no one to help me through the results.

I had an appointment with an Nhs allergist two Friday's ago....well I only got to see the allergists nurse! Lol at the end of the chat they said there's nothing they can do for my itch/nose if the antihistamines are not working. They did run some blood tests though and suggested asprine desensitisation. At least then I can rule somethings out. Oh they did take bloods for liver function and full blood count. At least that's something. I'm still waiting on those results though. It us like banging your head against the wall with the Nhs tho! They never look beyond what drugs they can offer you. So if there's no drug.....

Then again I think is anyone else offering a way out of this.....

 

[CantThink]

I've done the thyroid and adrenals thing. The mitochondria etc. that's why I need someone to help me through this impasse. It's not good me having tests done and no one to help me through the results.

I know qhat you mean and want - I don't know who can help you though. I would LOVE a 'proper' doctor (like what we are imagining in our minds)! I don't even have a regular GP.

I've had to do it all myself regarding my thyroid because I couldn't find anyone to help nor did I have the money to spend on trying doctors out (if you know what I mean - it's a gamble). I was not treated for my hypothyroidism as they (NHS specialists and GPs) wanted to wait for my thyroid to die completely (which the NHS specialist gleefully told me could take years!), so I ended up having to do it all myself.

I'm not necessarily advocating that path as everyone has to do what they feel is right and ideally a doctor should be supervising. Thing is, I was slowly becoming completely bed bound with even more symptoms, plus extreme apathy, and I didn't want to wait to get worse to the point where I couldn't even help myself.

I've never tested mitochondria function - is the treatment related to methylation cycle?

I appreciate doctors who are trying to help M.E. patients, but I feel there is a natural conflict between the cost/risk/effort we face by consulting them, and our expectations and our ability to replace money spent. This creates a situation where the doctor wants to see the patient but the patient wants to know the expense and effort is worth it... We have no way of knowing. It could be a case of pouring money down a hole... I think because they are capable of earning (and in some cases making a lot of money off patients/their business) it is easy for them to forget this. If you are sick, can't work and have finite resources that won't be easy or even possible to replace, of course one wants and needs reassurance that some change for the better will result from the expenditure.

I had an appointment with an Nhs allergist two Friday's ago....well I only got to see the allergists nurse! Lol at the end of the chat they said there's nothing they can do for my itch/nose if the antihistamines are not working. They did run some blood tests though and suggested asprine desensitisation. At least then I can rule somethings out. Oh they did take bloods for liver function and full blood count. At least that's something. I'm still waiting on those results though. It us like banging your head against the wall with the Nhs tho! They never look beyond what drugs they can offer you. So if there's no drug.....

Then again I think is anyone else offering a way out of this.....

That's so weird - why couldn't you see the doctor? So antihistamines are the only treatment? What about steroid spray? Have you seen an ENT?

 

[Sporty]

I know qhat you mean and want - I don't know who can help you though. I would LOVE a 'proper' doctor (like what we are imagining in our minds)! I don't even have a regular GP.

I've had to do it all myself regarding my thyroid because I couldn't find anyone to help nor did I have the money to spend on trying doctors out (if you know what I mean - it's a gamble). I was not treated for my hypothyroidism as they (NHS specialists and GPs) wanted to wait for my thyroid to die completely (which the NHS specialist gleefully told me could take years!), so I ended up having to do it all myself.

I'm not necessarily advocating that path as everyone has to do what they feel is right and ideally a doctor should be supervising. Thing is, I was slowly becoming completely bed bound with even more symptoms, plus extreme apathy, and I didn't want to wait to get worse to the point where I couldn't even help myself.

I've never tested mitochondria function - is the treatment related to methylation cycle?

I appreciate doctors who are trying to help M.E. patients, but I feel there is a natural conflict between the cost/risk/effort we face by consulting them, and our expectations and our ability to replace money spent. This creates a situation where the doctor wants to see the patient but the patient wants to know the expense and effort is worth it... We have no way of knowing. It could be a case of pouring money down a hole... I think because they are capable of earning (and in some cases making a lot of money off patients/their business) it is easy for them to forget this. If you are sick, can't work and have finite resources that won't be easy or even possible to replace, of course one wants and needs reassurance that some change for the better will result from the expenditure.



That's so weird - why couldn't you see the doctor? So antihistamines are the only treatment? What about steroid spray? Have you seen an ENT?

Hi, no the mitochondria isn't to do with the methylation cycle. It's the powerhouse of ones cells. As far as Myhill is concerned, the cause of most of our ills! Lol