Equity Release - Should I?

fwor

She has my sympathy - anyone who spends any amount of time in places where you can pick up ticks is at risk (though the level of risk per bite appears to be very low, fortunately), and it's a constant background worry. I get a couple of dozen tick bites a year on average, and it's hard to escape the conclusion that it's only a matter of time.

But I don't think it's fair to say that the NHS don't have a clue how to treat it. It's more accurate to say that the standard of evidence that a treatment works is very high, and as a result the NHS can be slow to react to novel treatments.

However... it's also true that there are a lot of treatments for all sorts of medical conditions that do not have scientific evidence to support them, and the people that stand to make money out of treatments can be very persuasive - for obvious reasons.

Are you aware that the NHS has issued an explicit warning on their website about treatments for Lyme disease? It appears that they are already aware that there are treatments that do not appear to be as effective as the sellers claim?

I don't have experience of the specific treatment you refer to, but a friend of mine recently underwent stem cell treatment outside the UK for a different condition, and his experience was very poor. He came to the conclusion that they were happy to take his money (in his case, £6k approx) but they were completely uninterested in carrying out any follow-up once they had it, and he admits that he has seen no consistent benefit as a result.

BrassicWoman

LoobyLoo0704 wrote: »

Unfortunately, in America, some states will not allow Doctors to treat Lyme disease and remove their licences. This very experienced Doctor has lost his licence.

Is that not setting off an alarm bell for you?


Lyme can look very like MS/CFS. the treatment involves rest, gentle exercise, healthy eating, sleep, and lots of time. Nothing is really proven to help after the initial period (requiring a lot of antibiotics). All stem cell treatment evidence is anecdotal to date, and of course you read about the success stories - but there isn't enough data to know if that's just coincidence. And people seldom write blogs on "it didn't work and I lost lots of money."



I fear your daughter may be straw clutching - which is fine if it is only her future she is endangering. But it is not...

AnotherJoe

LoobyLoo0704 wrote: »

Only alternative therapies are available to Lyme Sufferers as the NHS really have no clue how to treat it.

You write as if the NHS is uniquely in a position where long term LD cannot be treated but it can be cured elsewhere. A quick look will find that there are no countries where long term LD is being routinely cured, which is the implication of what you've written, eg its the NHS that is uniquely screwing up.

And "alternative therapies" generally means "therapies with no scientific basis or proven record of success" rather than "treatments which work" because once they provably work, they arent alternative any more.

Given its debilitating consequences and widespread nature, you can be sure if there was anything that worked out there, it would be rapidly taken up (unless cost was the issue, but £25k isn't that much compared to many mainstream operations and treatments so thats not the issue, a years cancer drugs could easily be 2x-5x that much)

Why isn't your daughter moving out of London where its very expensive to live, and using that released money to fund what I am afraid to say is almost certainly a quack treatment ?

Candyapple

Sorry to hear that your daughter has been unwell for so long - however, £25k is a lot of money to hand over for no guarantees of any successful outcome.

You also have 2 other children as you have pointed out, unless you are willing to gift the other 2 £25k each as well, this could possibly end up causing a rift amongst you and your children.

If your daughter lives near London then her and her partner need to move somewhere more affordable as no doubt living on one person's salary, unless he earns mega bucks, I would say they can't afford it and possibly are already putting themselves into debt paying for their lifestyle.

It sounds like your daughter should perhaps try and seek a second opinion or get a referral from her GP for a specialist and try and get as many tests done to see what the underlying cause is. From the article below, it sounds like it could be an auto-immune disorder.

The good news is that since Lyme disease is caused by bacteria, antibiotics do a good job of eliminating the disease. Taking antibiotics for one to four weeks, as directed by a doctor, successfully kills all the Lyme-disease bacteria in the patient's body. Unfortunately, a small percentage of people continue to feel symptoms for many months or even years after these bacteria have been eliminated. For such a person, calling his condition Chronic Lyme disease is incorrect since Lyme-disease bacteria are no longer present in his body. Also, since there are no Lyme-disease bacteria in his body, giving such a person more antibiotics over the course of months and years accomplishes nothing.

Researchers do not currently know conclusively what causes Post-treatment Lyme Disease Syndrome. There are two likely culprits: residual tissue damage and auto-immune malfunction. As mentioned earlier, the Lyme-disease bacteria can damage nerves. Depending on the amount of damage, it can simply take months for the nerves to heal, even long after the bacteria are gone. The good news is that they eventually do heal. Almost all people with Post-treatment Lyme Disease Syndrome eventually feel better. The other possible culprit is an auto-immune disorder that is triggered by the Lyme disease. The patient's own immune system works so hard at killing off the infectious bacteria that it ends up attacking the patient's own healthy cells long after the bacteria are gone. Again, most people that experience this effect eventually feel better after several months.

Unfortunately, many of the symptoms of Post-treatment Lyme Disease Syndrome; muscle soreness, joint pain, headache, fatigue, malaise, etc.; are vague symptoms that could be caused by many other conditions. Lupus, Crohn's disease, HIV, fibromyalgia, CFS, multiple sclerosis, and rheumatoid arthritis are all conditions that could be easily mistaken as Post-treatment Lyme Disease Syndrome. For this reason, the number of people misdiagnosed with Post-treatment Lyme Disease Syndrome or "Chronic Lyme disease" is likely high. Fortunately, a simple blood test for elevated levels of the corresponding antibody can determine whether a person has had Lyme disease, even if the Lyme-disease bacteria are no longer present. Since antibody levels can stay elevated long after the bacteria that triggered them are gone, a positive antibody blood test does not mean that a person currently has Lyme disease, just that he has had Lyme disease in the past.

Some alternative medicine providers use the phrase "Chronic Lyme disease" as a catch-all diagnosis for any person experiencing general fatigue. Such a diagnosis is neither logical nor helpful. If a patient did not receive a tick bite, did not develop a rash, does not have the other symptoms, and does not have positive blood tests, there is no scientific reason to assume that the patient has Lyme disease or has ever had Lyme disease. Misdiagnosing a patient prolongs the time before he is able to find and treat the real cause of his symptoms. Since the concept of Chronic Lyme disease as a diagnosis for general fatigue is not supported by scientific evidence, any website or publication that claims this should be approached with skepticism.

LoobyLoo0704

Thank you all for your advice. My daughter has endured so much and the NHS are unable to offer her any treatment to counteract her illness. Indeed, when Lyme is mentioned it seems to put them off. The statements above are exactly what Lyme sufferers hear all the time. My daughter has numerous symptoms - Neurological damage, bladder issues, Bells Palsy, POTs, Stomach and Bowel issues, brain fog, loss of memory and chronic fatigue. Has had seizures. Has had all the anti biotic treatment. Suffered with co-infections Babesia and Bartonella + became a carrier of EColi all contracted from the tick bite. There are many new cases of Lyme - 3000 in this country per annum, much more over the world. It is an epidemic in America. Doctors continuously deny that Chronic Lyme Disease exists - then they should see my daughter and the many other thousands who are struggling to overcome it. My daughter was continuously told that "it's in your head" or it's IBS or the like. After struggling for 5 years with dismissal, she researched and found her symptoms of Lyme. She and I went to our GP and asked for the test. He was even unsure what to ask for. After 5 years her test came back Positive. But then the problems start on how to obtain treatment. John Caudwell and his family all suffer from Lyme Disease. He has made enormous steps in getting Lyme recognised. Any how, thank you all for your advice. I actually agree about the equity release but still have to find someway of getting treatment for my daughter. Her partner works in London and it is not possible for them to move out - they currently live on the border of Essex and Herts. Thank you for your time.

CakeCrusader

The NHS do treat this. Every condition has specific guidelines, which details how diseases and illnesses are managed. Here's the NICE guidelines for Lyme Disease; https://www.nice.org.uk/guidance/ng95


There are cases of people online who have been going abroad for 'treatment', but you're looking at 65k, not 25k. Just be wary. No parent would want to see their children suffer, but the fact that this Doctor has had his license removed should ring massive alarm bells.

BrassicWoman

I think the problem is that there is no cure at this point in time, not one with solid evidence to support it. So you may be buying a miracle and you may be buying snake oil.

I know it is difficult to accept there is no cure.

Pixie5740

CakeCrusader wrote: »

The NHS do treat this. Every condition has specific guidelines, which details how diseases and illnesses are managed. Here's the NICE guidelines for Lyme Disease; https://www.nice.org.uk/guidance/ng95


There are cases of people online who have been going abroad for 'treatment', but you're looking at 65k, not 25k. Just be wary. No parent would want to see their children suffer, but the fact that this Doctor has had his license removed should ring massive alarm bells.

There are NICE guidelines for treating Lyme disease but I think the issue that the OP's daughter is facing is not the treatment of Lyme disease but the treatment of chronic Lyme disease which the majority of doctors don't think exists.

The OP is in a tricky situation. It's awful watching your children suffer but thinking logically I'm not sure spending £25k on some quack treatment from a doctors who's had his licence revoked is the answer. Has your daughter sought advice from a private doctor? Usually they have access to and are more willing to carry out tests that a NHS GP might not.

Ilona

Op, I understand that you are desperate to help your daughter, but if John Caudwell with all his billions cannot help his family members get over the disease, then I am not sure what you are hoping for by spending £25,000 of your money. It's very sad that people are suffering, and I hope one day they will find a cure, but it doesn''t seem likely to happen for a while.

https://caudwell.com/lyme-disease-nices-guidelines-are-helpful-but-without-desperately-needed-research-thousands-will-continue-to-suffer/

Ilona

Anthorn

LoobyLoo0704 wrote: »

Hi, after many years of financial problems, I am now the proud owner of my bungalow, mortgage free. I am 66 and although "retired" I am self employed and earn a good living on top of my pensions. My daughter is very ill and needs treatment. This treatment is not available on the NHS and it will cost in the region of £25,000. She had asked me to consider equity release on my property and I am so torn. On one hand I am desperate to help her, but I have two other children who could be affected in the future by my decision. Is this the only way to raise this amount of money? I am enjoying my financial position after so many desperate years and would be grateful for some sound advice.

Depends on the equity release and I can only comment on a particular type with which I am familiar. In the circles I move in, sometimes very slowly lol, pensioners who are also property owners and being warned against selling their home on equity release. This is the type where you sell your home and then live in it rent free or for low rent until you go to the great estate agent in the sky.

The problems start when you want to move. Perhaps you want to downsize or perhaps move to a different area. The chances are that you would not be able to do that without completely losing your home.

What you need to do is consult a financial advisor but beware those who promote equity release. You need an advisor who is impartial and probably independent. Good luck.