Help James recover from severe chronic illness

My partner James, a mathematician, neuroscientist and keen climber, has been severely disabled by chronic illness for nearly 2 years now. Despite multiple interventions, his condition has not improved. He is unable to work, unable to enjoy his passions of climbing, mountain biking and reading, and unable to socialise with his friends, colleagues and family (who miss him very much indeed).

However, we have been given hope in the form of a new diagnosis and treatment protocol. It’s very expensive, so we (his parents and I) need your help to raise money to continue to pay for it and give James his life back.

A little bit of history

James has previously been diagnosed with both Long Covid and ME, and his symptoms are classed as Very Severe. It can be hard to imagine what this is like if you haven’t experienced it yourself. Patients have described it as being buried in their own bodies.

James has been bed-bound since March 2023, and too weak to even sit up for 8 months. He regularly suffers from severe head and muscle aches. Since June last year, he has been so hypersensitive to light and noise that he cannot read, listen to radio or chat. Even company isn’t tolerable most of the time, despite the loneliness. This strong, independent man has to depend on 24/7 care from his partner and parents. Instead of living life to the full, he has to exist alone in a dark and silent room.

Medications to help manage his symptoms are not available on the NHS, so James has been treated by private specialists for over a year, costing thousands of pounds.

It is known that SARS-COV2 can reactivate latent infections . An extensive blood test in August 2023 showed that James had reactivated Epstein-Barr virus, reactivated Varicella Zoster (chicken pox) virus and a borderline result for Lyme disease. Unfortunately, anti-viral treatments have not led to an improvement in James’ symptoms.

A new direction

Recently, one of James’ doctors recommended investigating tick-borne infection more thoroughly and put us in touch with a world-renowned specialist in Lyme, tick-borne diseases and associated conditions. Based in Germany, Dr Carsten Nicolaus has helped thousands of patients over the last three decades.

When we consulted Dr Nicolaus, he explained that James’ very low CD57+ absolute count, together with his symptoms and treatment history, clearly indicated a diagnosis of chronic tick-borne infection. As we have learned, the bacteria migrate to connective tissue and are not easily picked up in blood tests, hence the previously borderline result.

The symptoms of chronic Lyme and other tick-borne diseases are almost identical to those of Long Covid and ME; in fact, they are all types of Post Acute Infection Syndrome (PAIS) or Infection Associated Chronic Condition (IACC). Most doctors are not familiar with these illnesses, and the NHS does not have established treatment protocols . We therefore need to pay for his treatment privately.

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Treatment protocol

Tick-borne infections can be difficult to eradicate fully , so expert knowledge is required. Dr Nicolaus’ treatment protocol is based on his extensive experience of successfully treating patients since the 1990s, as well as the latest research from Johns Hopkins University. We have asked lots of questions and Dr Nicolaus' answers have reassured us that he has expertise we can rely on.

The treatment will break down biofilms, allowing the antibiotics to kill off the bacteria. It will also strengthen James' immune system, which will be checked regularly during the course of the treatment.

The first 2 months of treatment will involve low doses of 2 antibiotics and various support treatments including:

Dr Nicolaus has designed the protocol very carefully for James and he expects that treatment will take 6-12 months, depending on how well he tolerates it and how fast or slow he can go. We have budgeted for 12 months, based on the experiences of others. Alongside regular appointments with Dr Nicolaus, we will be able to call on a local private doctor, who is fully on board with this protocol, to oversee James’ treatment locally.

Costs

A year of treatment for James will cost £33,752. This breaks down as follows:

We have included a contingency of £125 per month for unexpected costs that arise during the treatment. In the event that James recovers more quickly than expected without needing all the funds raised, we will donate any unspent funds to medical research.

Thank you so much for reading!

If you are able to contribute any amount to support James’ recovery, we would be so enormously grateful.

We know that some people may wish to help but not be in a position to contribute financially. If you would like to hold an event, or get sponsored to do something you enjoy to raise money, please do! Even just sharing this page with your friends and family or anyone else who knows James would be very helpful.

We would be so grateful for anything you can do to support James’ recovery and help give him his life back, even if it’s just a share. :)

Thank you!

Emma (James' partner) & Glynis and Andy (his parents) x