Re Paul Worthley, I have only heard very good things about him and that he’s very supportive and kind. He’s helped a few people I know. I tried to get an appointment with him recently but he doesn’t do phone appointments anymore, only clinic visits
I would be grateful if anyone who has seen him can comment and say what kind of advice he gives.
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Re Breakspear. I really don’t know where to start with this. My honest opinion is there is a lot of questionable things going on in that place as well as a lot of quackery. Some of the medicines they prescribe are perfectly fine medicines that others prescribe which are helpful (like LDN, anti virals), however they are also big on Lyme treatment. I am not entirely sure as to if their Lyme is a valid test or valid diagnosis and do not know enough to comment except one of my tests was negative one positive and still they dxd me with Lyme and then said I should have IVs of an antibiotic which is usually used as a last resort antibiotic. I didn’t do it as the test I did is one that cross reacts with autoimmune antibodies yet the dr didn’t mention that when it came out positive, I was very uneasy about the whole thing. They say some of the symptoms related to M.E, are instead caused by infections like babesia.
I had high levels of some viruses in my tests and so started antivirals. Essentially to cut a long story short, I started trying IV treatment instead of tablets - made me increasingly unwell as travelling made me so sick and I ended up back at home not being able to do anything.
I spent a lot of money on supplements and allergy testing and blood tests.
The blood tests cover Lyme disease, co infections, active viruses, toxic chemicals in urine, nutritional deficiencies, myhills test, histamine etc. It’s called an “environmental illnesses” approach. Some of the tests are at labs that I find questionable because they both make tests as well as sell supplements as a result of the test results. Breakspear is also very big on supplements.
treatments they give are anti virals, antibiotics, high dose vitamins, supplements (they are huge on supplements), diet advice, psychology. Treatments include courses of IVs, I know someone who would spend £20,000 every 2-3 months on long courses of IV treatment. Each IV costs like £120. So even if you do one a day, for 4 weeks - you’ve already spent £2000.
This is what I’ve observed. They are pushing treatments on patients that are sometimes questionable at best and really dangerous at worst. I’ve seen people who’s veins have collapsed due to having so many IVs so they ask them to put ports into their ankles or their chest.
They also have a weird thing about toxicity in the body and detoxification and recommend many supplements for it.
When I had a bad reaction to an Iv with high dose B vitamins, they didn’t seem concerned at all and said I was having a “herx reaction”. Anything that went badly, or people felt a bit more ill, was called a herx reaction. Again that made me uneasy. I had an extreme reaction actually to the B vitamins to the point my mum was on the verge of going to A&E with me and calling an ambulance after the clinic that day.
I have however seen people make improvements. However when I listened to those patients stories, it seems to me that
*one of the patients who had a remarkable improvement had a very severe viral infection, when given antivirals was then able to make a dramatic improvement within weeks from being completely bedbound at 0% functioning to quite high functioning. It was due to the anti virals but they still continued to go to Breakspear and get lots and lots of other treatment including Lyme and high dose vitamins. Perhaps it helped I don’t know but certainly the dramatic improvement was from anti virals.
*one person says they’ve improved due to Breakspear but also says the biggest improvement was after they were given PoTS medication outside of Breakspear
*another also says they have Lyme but actually had most improvement after antivirals
*other people used “natural protocols” like supplements
*I think some may have improved naturally anyway
*it seems to me that it’s just a few drugs that help people like anti virals or LDN. However I think in order to keep people in their clinic they do lots of other things like the IVs, nutritional supplements and high dose IVs which I’m not sure about.
*they ignore PoTS even when you do have it
*they do something called low dose immunotherapy. People swear by it. I do not know enough science to say whether it works or not but it’s essentially putting a tiny bit of a substance you’re intolerant to eg chicken diluted in water and you have a bit of that every day. So that when you next eat the chicken that day you won’t get reactions. But the thing is you need to continue with the LDN for a long time or even forever. It’s not really like normal allergy desensitisation. Also it costs a lot of money for testing (think like close to £400 for a day of testing which might test a few foods). And then you pay for the “vaccines”.
They also can ask you to do an autonomic test (I think they push it quite heavily) it costs £800 and then they don’t even interpret the findings. Mine had so many things wrong with me in terms of heart rate and blood pressure but then I spent another £300 to speak to the person to interpret it and they said “look out the window and try to find some happiness” Yes really!
My advice is to not go there. I’m sorry to say. I do understand people go for Lyme and that’s totally their right to do so. I just had a very uneasy feeling about that place. I actually went there as I wanted to try anti virals but unfortunately I became too ill to even try it properly.
But the whole place made me feel uneasy.
Like I said, I know people who have improved a lot. I’m just unsure as to whether they could have got the same affect by visiting another doctor who will prescribe some meds without all the added and potentially questionable stuff they do. The amount of money as well that all of this costs is unbelievable.
I am hoping to see another doctor to try the medicines I never got a chance to try properly - I think other doctors on your list prescribe some of them like anti virals LDN etc.
Edit: they also have a heat chamber thing. I forgot what it’s called. It’s supposed to help you sweat out the toxins. I never tried it as I was far too ill and anyway one of my main symptoms is feeling too hot/sweating episodes etc.
Edit 2: sorry you mentioned Dr Puri. I know of people who did see him. He had a special interest in Lyme, I heard, and it was very difficult to get an apt with him at the time. I think he treats along the same lines as the rest of the consultants.
