Can I have hope? :( My latest treatment attempts & failures + Anyone heard of the Wimbledon Clinic?

[Gecko]

Hi all,


I am tempted to write my whole back story but you’ve heard it all before although there are a few variants to the most common stories.


I may write in more detail at some point but as it stands I just have some questions and comments for you if you don’t mind?


Firstly….Can I have hope? Over the last 11 years I have been up and down in my reasoning with how likely I am to get better. I’m back in a slump and wondering if with all of these many thousands writing and hoping and researching without mass positive feedback or results how likely is it that I am the one to get better L Sorry if that sounds depressing but it’s my ‘slump’ talking.


I am currently embarking on numerous ‘projects’ (as I’m sure you are) to get back to health from CFS, severe brain fog, dizziness and ear problems and other ailments etc. etc. etc.


Treatments recently have included:


For a few months I had chiropractic adjustments as I was told my Atlas was out of alignment and that this was the way to get the blood flowing through my brain and ‘cure’ me. I was worse after these months and after far too much money came away with nothing but pains in my neck and back that weren’t there before.


I have also has a consultation at the Breakspear Clinic. It was really nice to have someone pay attention to you for an hour and a half after being treated by the ‘in and out’ doctors on the NHS. I came away slightly hopeful. I have been hesitant to continue treatment however as just the initial tests will leave me broke and after reading more about people’s experiences, whilst there are good and bad comments, nothing seems to be particularly positive in terms of a resolution. Once again, my hope has faltered. Is it worth all that money for potentially negligible improvements?


I also went to a ‘Jaw symmetry’ doctor who’s name I won’t bring up. I paid £120 to fill in a questionnaire and then had a 15 minute appointment with barely any examination where I was told CFS isn’t real and it’s due to removal of teeth and braces and that with 2 years of treatment costing £10,000 plus £4000 for new teeth to fill the spaces would realign my jaw and cure my ‘cfs’ and ear issues. I was hopeful about this radical new treatment before going (and without knowing costs) but the Dr was reluctant to give me much information on the treatment itself past what is mentioned above and whilst I don’t dismiss anything yet I wasn’t willing to somehow obtain £14,000 for such drastic treatment without solid evidence. A rather large online list of testimonials was provided and are accessible to all but I find it hard to believe such claims when they are all siuated on the Dr’s website.


I have also obviously been down the NHS route for 11 years and have recently been to a CFS clinic where they are actually talking about introducing anti-virals as an NHS treatment. Needless to say, my next appointment will be in about 4 months and according to the clinic, within the next 10 years they hope medical professionals will start to believe in CFS as a real illness and more understanding will ensue…..Yay!……


I am also fighting to obtain B12 injections on the NHS for a ‘normal’ level of 247.


My latest discovery is The Wimbledon Clinic of Natural Medicine. I discovered it in one of my fervent, desperate research periods a few months ago, put myself on the waiting list and have an appointment very soon. I have found barely anything about this place online in terms of people’s thoughts and experiences which is obviously not a good thing, and whilst I am dubious again after wasting so much money on dead ends, I may as well fork out the £150 (approx, can’t remember cost) for a consultation. There is nothing about costs for further treatments and whilst they list treatment options online, they are unwilling to discuss what may need to be done and the costs involved before a consultation (which I sort of understand although there would be no harm on letting people know how much everything costs so that the money on a consultation isn’t completely wasted if treatment is too pricey). I am not saying anything negative about this clinic please realise. I will reserve judgment until after I go but I am making others aware of it should it be of interest. It seems on the outset similar to Breakspear but with natural remedies. I will let you know how it goes!


Has anyone heard of or had experiences with the Wimbledon Clinic? I really don’t want to have that terrible sinking post-hope disappointment again but I am slowly becoming accustomed to it.


Does anyone have any comments about any of the above?

Does anyone have any suggestions regarding either the above or my next steps in treatment?

Also, does anyone have any links to believable cure stories to re-install a glimmer of hope in me?



Many thanks for your time!

 

[Jon_Tradicionali]

Firstly….Can I have hope? Over the last 11 years I have been up and down in my reasoning with how likely I am to get better. I’m back in a slump and wondering if with all of these many thousands writing and hoping and researching without mass positive feedback or results how likely is it that I am the one to get better L Sorry if that sounds depressing but it’s my ‘slump’ talking.

Ahoy there. Great to be on the same boat as someone else at least. I've been asking myself the above question virtually every day for the last decade. But I wont dwell into that.

I wanted to comment on the "jaw symmetry" which you mentioned. Being desperate as we are, I too gave this "doctor" the benefit of the doubt. I paid 35GBP for the online questionnaire. After having to wait 30 minutes for him as he was running late with another patient, he saw me and within the first 3 minutes it was rather obvious he was a snake oil vendor. An absolute imbecile with absolutely no knowledge on CFS. His eligibility to practise dentistry is another matter and one I cannot comment on. The "appointment" was very rushed and his secretary was clueless. Any site which relies on testimonials to attract customers is big no-no in my eyes. I asked him on his theory of the cause of CFS and his proposed "cure". His answers would make psychiatrists look like scientists. Anyway, whilst he sent me to the waiting room and the secretary went to fetch the form for me to fill out to begin payment for the 14,000 GBP treatment, I took the opportunity to fast-walk out of the place as quickly as possible before he asked for the 100 GBP appointment fee.

I'd love to mention his name so as to dissuade other potential customers of his from buying in to his lies and blatant lack of competency. But I shouldn't, I hope the description helps those who may come across the "doctor" in question to steer clear.

Also, does anyone have any links to believable cure stories to re-install a glimmer of hope in me?

I too would like to read some of these. I maintain a very inflated sense of hope by reading 2-3 CFS related articles every night before sleep. Some real hope would be great.

 

[Vic]

How did these dentists actually say CFS worked and how fixing the jaw would fix CFS?

 

[IreneF]

You know, my husband's jaw is more asymmetric than mine, and I'm the one who's sick.

I have read about a few peoplewho've gotten better, butit's either taken a long time or been a temporary remission.

 

[Esther12]

A lot of people are making money from selling treatments with no good evidence of efficacy for CFS. I would advise real caution.

Lots of different people can end up with a diagnosis of CFS, some of whom will just naturally recover - if they're doing some quack treatment at the time of their recovery this can lead to them claiming it is a cure, but these claims should be treated with scepticism.

Good luck with everything.

 

[Valentijn]

Hilarious regarding the jaw stuff! I've never had a tooth removed, nor had braces ... yet I definitely still have ME/CFS

The Wimbledon clinic has their "Fatigue/ME" page at http://www.wimbledonclinic.co.uk/fatigue-me . I think they might be understanding some of the causes of chronic fatigue, but are vastly over-estimating their understanding of ME/CFS.

They also confidently proclaim that the "Cell Free DNA Blood Test" is diagnostic of ME, which is total bullshit. Their other "diagnostic" tests are also highly unsupported by scientific research, as are most of the treatments.

Personally I wouldn't bother with Wimbledon. If you're considering spending some serious money for testing and treatment, I'd recommend Dr de Meirleir in Brussels.

 

[Little Bluestem]

You should like this thread : Talk about hope -- Who has improved significantly?

 

[justy]

Hi, I wouldn't forget the breakspear out of hand. They are notorious for testing people for lots of unnecessary things, and pushing autonomic and allergy testing, they are also quite expensive in comparison ot say KDM in Belgium. But I have heard from other patients of theirs that you can pick and choose which tests and treatments you have - I would definitely consider Lyme and co infection testing if your profile points to this - which Bs can offer.

Otherwise as Vlantjin suggests - you could try KDM in Brussels - a lot of his patients are improving - unfortunately I am not one of them, but only because I have become more sick and cannot tolerate the treatments or travel to the clinic for appointments and treatments based there.

I am going to Breakspear in Feb with a list of things I know I want testing/treatment for - I know some come out with costs of £30,000, but it needn't be like that if you pick and choose carefully what you want from them. But ot put it in perspective KDM's clinic charged me approx. 3,500 euros for very extensive testing - and his appointment fee is not high. Whilst Breakspear charges £4,000 for 4 weeks IV antibiotics for infections, KDM's clinic charges around 2,500 euros for 12 weeks (of coirse you have living costs as well.

Sorry for the rushed post - am supposed to be writing an essay and have prevaricated long enough!!
Good luck, and welcome to PR!

 

[FTY]

Hi all, I just wanted to say that I read this post a few days ago and I have a friend of a friend who is being treated by so called jaw re-alignment dentist that you mention (I'm pretty sure we're talking about the same person). I was beginning to be tempted myself after looking at website. However, it turns out he has just (literally in last week or so) been sued for a lot of money by a former patient (fourth time this has happened to him) and is now unable to practice whilst being investigated. Just thought you might be interested to know that your gut feeling was right. A good reminder to all of us that gut feeling is much more trustworthy than lost lists of testimonials, however desperate we are!

 

[taniaaust1]

Unfortunately with ME/CFS to know really what treatments may be of aid (dont expect any miracles), you will need a lot of tests done and tests are always costly. If you are seeking help from these places who may be able to help, you really do need to be prepared to be paying out money for these.

If you are hoping for more then just some improvement, you are likely to keep experiencing disappointment. Miracles around ME arent all that common.

My advice is hope for improvement but dont expect miracles... and watch those who will con you who dont really know anything about this illness.

Anyone I see, I investigate how much they know about ME/CFS first and my first appointment with them if I couldnt find out before hand is to find this out. If they cant answer my questions, I know they are a sham.

A friend made me go to a doctor years ago who sold him that he could fix me, it was bullshit of cause but unfortunately my good friend believed it and I had no other choice but to take the meds otherwise he would of believed I wasnt trying (that come with hellish side affects to which even grew concerned and quickly saw I had to stop taking them).

That doctor lost his medical licence only a couple of years later for fraud.