UPDATE 19 DECEMBER 2024 (the worst time of the year to fundraise....)

Dear lovely generous people. This update has been delayed due to a number of things, getting COVID for one—the sickest I think I’ve ever been, Ronan getting extremely ill after eating some leek in my soup....and my not being able to see my own GP until last week, to find out if she can prescribe the sixteen weeks of three antibiotics for my late-stage Lyme diagnosis from Dr. Sinclair. I wrote about this diagnosis on my blog here in early November, detailing the diagnosis and also that I realise there are potential issues with the treatment. However, if it can help just one of my many symptoms it would be miraculous. I’ve decided to start, if I can, in January, so I can get through the Christmas period without side effects…. (I haven't even mentioned that I have a potential basal cell carcinoma on my forehead, weirdly it seems the least of my problems, but it's being seen to urgently.)

Unfortunately, my GP can only prescribe one of the antibiotics, Azithromycin. She has, however, booked me in for the two basic blood tests and ECGs asked for by Dr. Sinclair, and will also see me every month. And, I want to thank a very very dear friend for so generously funding the extensive supplement protocol that Dr. Sinclair suggested, to support my immune system and my body in general during this process. 

I will still need two consultations with Dr. Sinclair, and, towards the end of the protocol, one more of the extensive blood tests from a German lab that were the deciding factor in the diagnosis (see my blog).

Once again I’m asking for your help. The good news is that the two remaining antibiotics, instead of costing over £800 as originally quoted, are MUCH less, due to the fact I’m ordering in bulk!

I’ll outline below what I’m asking for now. It’s a huge amount I know. Even just a pound will help, and even just reading all this helps. Chronic illness is such a lonely journey.

FINANCIAL DETAILS

16 weeks triple antibiotic therapy

Rifampicin 300mg 203 tablets.

Minicycline 50mg 350 tablets

                                                               £263.14
Two Consultations with Dr. Sinclair

                                                               £388 (194 x 2)

GLXG Blood tests from Germany

                                                               £807.50

Total:                                                £1458.64

Paypal/Fundrazr fees @12%           £175.00 - PLEASE NOTE, you can lessen these by sending a donation directly to me via paypal as Friends and Family, and I'll update the fundraiser.

Total needed right now:                  £1633.64

I will update the fundraiser to reflect this. The total including what I needed before is £3071.64 (you can't make a goal with pence, so I've made it £3072.00)

If it's easier to send money directly via Paypal, it's to sandra@sandrajensen.com - and I can send bank details if that helps.

UPDATE 13 September 2024

I had my first session with Dr. Ben Sinclair on the 8th of August, and I wrote a blog post about that which you can read here. He was amazing, very thorough and I very much felt myself in excellent hands. As the blog says, he wants to do some blood tests on immune function and various tick-borne diseases. These tests are sent off to a specialist lab in Germany. Initially the tests suggested, while extremely comprehensive, cost £2210. I asked for what could be the minimum, and have a new set of tests reccomended which cost £807.50 including DHL costs. It's still a lot, and once again I am asking for your help. I have, amazingly, found a local phlebotomist who is happy to do the draw if I donate a little to an animal welfare charity! (My GP practice would have done them but the draw has to be done on a Monday or Tuesday and they don't do blood draws on those days).

In the meantime my health has been bad, with days of feeing quite dire, so I'm very eager to get started on the antiviral protocol (I need to get the blood tests done before doing these).

Financial details:
I've booked in and paid for a second session with Dr. Sinclair, which will be after I've trialled a month of the antivirals. That session will be a bit shorter than the first and costs £194. The first sesson cost £299. Total for both sessions = £493, + Paypal/Fundrazr fees @12% £59 - total £552.
I raised £700 which means I have £148 in the 'kitty'.

Blood test costs: £807.50
minus £148 means I still need £659 + Paypal/Fundrazr fees @12% £79
Total needed right now= £738

I will update the goal of the fundraiser accordingly - the total goal including what I needed before is £1,438

I no doubt will need another follow up session with Dr. Sinclair, so anything raised further to this will go towards that. It's a lot to ask for, and the tiniest amount will help SO much.

Original text:

I'm asking for support for two sessions with Dr. Ben Sinclair, a private consultant/specialist on long term, chronic health issues, specificaly tick-borne illness and retained pathogens like Epstein Barr Virus. I've been ill now for 30 years and have tried everything. I always prefer the alternative, 'natural' approaches but they haven't worked, so now I'm trying something different, and I'm hoping for your help to have someone experienced guide me on this journey.

The Art of Illness...

It’s been over a year since I wrote a blog about my health (the latest one being Finding Home). Mostly because not a lot changed since then, both positive and negative aspects were on an even keel – nothing drastically new, but manageable, many thanks to all the support I received from so many of you. So: better mental health, lessening of weird symptoms (burning mouth/foot syndrome, thyroid goitres etc) but still the small window of energy each day, bordered by exhaustion, still a continuous discomfort veering sometimes into pain down my sciatic nerve, still my pancreatic insufficiency for which I have to take digestive enzymes with everything I eat, still getting up in the night to wee several times, and sadly the restless legs returned when I stopped the sciatic pain medication, but if I can get my ‘bad’ leg pulled (quite literally!) before sleep, this seems to ease it so I’m sure it’s associated with my prolapsed disk. I’m also still waiting for consultations with an NHS cardiologist etc (it's been over 2 years now...), but it’s been a while since a tachycardia episode has woken me violently in the night.

If there is an art to illness, I felt I was learning it.

I suspect one of the main skills involved in such an art is being willing to ask for help. If you’ve read my blogs you’ll know how difficult this is, was, for me, and yet doing so created a fundamental shift inside me, the beginnings of rewiring of old programming that I had to do it alone, had to be independent, strong, without needing help from others. This was what my mother modelled, and although I could see how negatively this affected her and her life, it was hard to shake myself free of the same beliefs. I was forced to, my health deteriorating so severely I more or less had no choice (see The Unendurable).

But something changed in March and once again I’m asking for help.

For no particular reason (that I know of), my exhaustion no longer had a window of energy and became crushing. It is 24/7. It’s affecting my eyesight, I can barely focus until late in the day (I’ve had my eyes tested, they are fine). The only times this had happened before was if I was actively ill, or after my adverse reaction to the vaccines. I was (am) still “aggressively” resting which means guided meditations lying down and an eyemask, at least twice a day – my days being shorter than most people’s as the best sleep I seem to get is in the morning, so I get up late, and my body starts to shut down around 7 pm, so the most I’m doing then is watching TV or reading.

Although this exhaustion bothered me, I decided to participate once again (and hopefully assist a little) in my partner, David Crean’s  Body ResonanceGoddess retreat in the beautiful Milelja Retreat Centre near the little town of Molyvos. I was much sicker the first time (two years ago), and almost didn’t go. I’m so glad I did as it was a deeply healing experience. This time, although I continued to feel very tired, it was once again amazing. Particularly important for me was making deep connections with three beautiful women, two of them half my age (but twice as wise), connections I know will last my life. But the journey home was challenging, 19 hours of delayed flights and long drives and sitting on runways or in the air awaiting a slot.

Two days later I became profoundly ill. What I sometimes call my ‘usual’, only more severe and lasting much longer than normal: deep malaise, as if you are about to come down with a tropical illness, or a bad flu, but without any coughing or sneezing or even fever. I could sense something was ‘in’ me, something unwanted – a virus, bacteria, mycoplasma, I don’t know. Something that lives inside me and hurtles to the surface when triggered, most likely. A retained pathogen, my acupuncturist believes. Three weeks of utter grimness.
At the time I was reading The Invisible Kingdom: Reimagining Chronic Illness, a 2022 medical memoir by the poet Meghan O'Rourke. It tells the gruelling journey of her own physical health, but also delves into the social and political ramifications of chronic illness. The gaslighting, the sexism, the failures of the medical institutions. The book is extensively researched and she interviews a number of doctors and scientists. It’s not an easy read, not because it isn’t well written, it is, but because of all she suffered emotionally and physically, still suffers, and the truth she writes about how it is for those with chronic illness.

There is so much I’d like to quote from the book but the parts that struck me the most were about how so many who are ill are expected to learn something from it. We do, of course we do, but at what cost? As Meghan writes:

“There is a razor-thin line between trying to find something usefully redemptive in illness and lying to ourselves about the nature of suffering. Until we mourn what is lost in illness—and until we have a medical community that takes seriously the suffering of patients—we should not celebrate what is gained in it.”

If you don’t want to buy the book, Goodreads has a good list of short extracts and quotes.

Like myself, Meghan has multiple reasons for her illness. But the thing that helped her the most, the thing that allowed her to live a relatively normal life, was treatment for Lyme disease: an intense and long-term course of antibiotics. (She followed this up with FMT in England - fecal microbiota transplant, to take care of the microbiome killing side-effect of antibiotic therapy, something I’ve known about for years as it can help those with chronic illness, but for me it’s unaffordable). One of the factors that most likely triggered my ME/CFS was South African Tick Bite Fever (similar to Lyme, often called Rickettsia). I’ve long thought about embarking on an antibiotic treatment, long avoided it, long wanted to try everything else. I’ve also thought about taking antivirals, which some with ME/CFS do very well on, and given it’s likely I have flare ups of Epstein Barr Virus and that I do have flare ups of HSV 2, they could help. But my impulse has always been towards alternative approaches, and even when I went to a tick-borne illness versant doctor in Germany fifteen years ago, she treated me with herbs (one year of them, after which she said I was cured and yet my health steadily deteriorated, possibly because I wasn’t properly dealing with past traumas that can also be a factor in chronic illness. I went on another tick-born illness focussed herbal protocol about six years ago).

Reading Meghan, and feeling so entirely awful for three weeks got me thinking. There are tests for tick-borne diseases, mostly in Germany and the US, but they are hugely expensive and not entirely conclusive. I spoke to my GP and she told me she has a patient with a similar profile– trying everything including trauma therapy, and that the antibiotic most used for Lyme, Doxycycline, finally helped this patient. Would I like to try? I had no hesitation. YES, I said. I didn’t expect any result but within a day of taking them I no longer felt grim. The tiredness, the difficulty focussing, yes, but not grim. I’m on a week trial, to be extended another week if I’m doing alright.

A couple of days after starting the antibiotics I connected with someone in a support group for those with tick-borne illness. I’m not sure why I reached out to this particular person, perhaps because she’s both a scientist and a writer, because I liked her profile picture, her posts about solar power, about how humans and apes share a common language, her posts about cats. She hasn’t been ill for as long as I have and she initially thought it was ‘just’ Long Covid. She discovered Dr. Ben Sinclair, a private consultant who is putting together a centre of excellence focussing on hard to diagnose and treat illnesses like Long Covid and Lyme and is working with some world leading experts on these.

As I know, many with post covid infections or adverse reactions to the vaccine have reactivation of other viruses or bacteria and based on her symptoms, Dr. Sinclair treated her with both Doxycycline and antivirals (Valacyclovir). While she still has Long Covid, she is doing much better since this combined treatment, and still works with him.

Given my own GP is not a specialist in this area, given the NHS only allows for 10 minute slots if that, and given this new journey I am on is not straightforward, not without side-effects or detours or set-backs (as is clear from Meghan’s book) I strongly feel I need such a support, at least an initial consultation.

It's not cheap, of course, but much cheaper than the blood tests I had vaguely been thinking about over the years: £299 for an initial 45-minute consultation. (The ten-day FMT Programme Meghan did in the UK costs £5175.00 but that’s not in my sights right now!).

So, yes, once again I’m asking for your help. Once again it isn’t easy, and I have no expectations. But if you can help that would be amazing. (If you’ve read this far, that’s amazing too!).

I would like help towards two consultations with Dr. Sinclair, one to start with and another to see how I’m getting along. Thankfully as I’m ancient now, prescriptions are free 😊

Thank you for reading. Thank you for being there. Thank you for the little messages I get on my Facebook and Instagram posts, it all means so much to me.

So this is what I'm asking for:

Two consultations with Dr. Ben Sinclair - £598

Paypal/Fundrazr fees @12% £71

Total: £669

Note:

 ***IMPORTANT***: If you donate via this fundraiser, you can adjust the tip amount to 0 before sending your donation. Click on the "Change tip amount" link, go to "Other" and type in 0 before you confirm with "Count me in". This way you will not be charged any extra fees for your donation, fees still just come off my end, but it means you’re not sending more than you mean to.

If a bank transfer is easier, let me know. My email is sandra@sandrajensen.net.

If you prefer to donate directly via paypal it’s to: sandra@sandrajensen.com - just make sure you make it for 'friends and family.'

The text to this fundraiser is mostly from my lastest blog - and links to all the posts about my health journey, but you can find the rest of me on my website:
https://www.sandrajensen.net