Please Help us to get Medical funding for Alex.

On 2nd April 2021, Alex aged 25/6 was given Ciprofloxacin for the possibility of having a nonspecific infection. This is a medication for which the government advises that it should only be used as a last resort owing to the very real possibility of long-lasting, disabling and potentially life-threatening side effects.

Alex had an adverse reaction to the medication. Since taking only 5 doses some Ten months ago, notably failing to complete the prescribed course, Alex has deteriorated on a daily basis. He is now in constant pain, unable to support his weight by any means - unable to even sit himself upright, let alone stand or walk - which means he is laid down in bed 24/7. His muscle and fat reserves have wasted as part of his symptoms, beyond what one might expect from being bed-bound, adding to the pains of any attempt to sit and all serving to make even wheelchair use intolerable.

Despite suffering with extensive neuropathic pains and systemic tendonitis, he cannot take any medication or pain relief to help with this as another symptom of these reactions is the development of intolerances. Alex has unfortunately developed such sensitivity that he is unable to consume just about anything without it making his condition far worse.

This condition is often referred to as fluoroquinolone toxicity syndrome (FQTS) or fluoroquinolone associated disability (FQAD). The present understanding is that the class of medicines to which ciprofloxacin belongs can cause mitochondrial damage, nerve receptor damage, GI tract damage and wide ranging dysregulation of endogenous enzymes, potentially affecting every facet of your body. It often causes constant muscle tremors, muscle and fat wasting, tendonopathy, neuropathy and allergies to foods and medications.

In Alex’s case, he has scored a full bingo card of potential side-effects and intolerances.

With such an extreme condition, you would think that the medical community would offer his health some time and consideration. Sadly, we have been faced with the reality that the NHS have little knowledge of this condition and are offering no treatment options, however speculative. More than this, we have been refused by Leeds and Sheffield hospitals and by various departments at our own local hospital. The typical response being that Alex is not their problem, failing to meet some particular criterion or other.

As is common for people in Alex’s position, the only source of possible insight has been the communities of others with the condition, so called “floxies”. These have provided him with information of possible avenues of investigation and treatment, except that the NHS has refused him. We have been left with no choice but to start looking at the private medical sector for testing and potential treatments to help Alex’s body fight this condition.

And this is where this plea comes in. Any such line of consultation, investigation and treatment comes at a substantial cost, one that we alone simply cannot afford. Therefore, we need all the help we can possibly get to raise enough for Alex to be able to receive treatment that the NHS either cannot or will not offer.

Any donations to help us give Alex a chance to return to a better quality of life will be greatly appreciated. It would mean the absolute world to us if we can go ahead and get him the help he needs, but we can’t without your help. In the event that any funds do not go to payment of Alex’s medical expenses, these will be provided to charitable causes that see to further the scientific understanding and general awareness of FQTS and FQAD.

 

There are 2 specialists in the UK that regularly deal with this condition but both are for private patients only. Despite this, he refuses to give up and deserves every single chance at life that he can possibly get. No 26-year-old should have to be told that there are no options on the NHS to treat so awful a condition!

 

So we ask you, please, spread the word & help us raise as much as we possibly can to help Alex get medical help.