2016: A Year Of Unsolved Mysteries

​Greetings everyone and welcome to this very very overdue update. My last post was back at the end of February when I had not long returned home from The Christie hospital in Manchester. Following a massive operation I felt sore and pretty ill but I was also really optimistic that my protracted health problems might finally be coming to an end. Sadly things haven’t quite worked out like that and I know I’ve been very quiet online since. Many people have been asking via Twitter, Facebook, email and other means just what’s happening. I hope I can clear that up today. Also, it’s 26 hours to the end of 2016 as I sit down to write this and it seems a good time to reflect on a year most people are quite happy to leave behind.

A picture of sherlock holmes sat in a rocking chair with trademark deerstalker hat and pipe.

Sherlock Holmes Never Left A Mystery Unsolved

Picking up the story where we left off back at the start of March, I was recovering well after 12 hours of serious surgery and the prognosis was good. I had been told by the doctors that it should take 10-12 weeks before I would be well enough to work again and begin getting my life back on track. Not having much experience of surgery and it’s effects before this it seemed a reasonable timescale. That meant I should be ready to go back to work some time in May. Turns out that wasn’t as realistic as I hoped. From the end of Feb to the end of April I would say I was feeling better week by week and it just felt like an upward progression. I was able to go for walks and begin to do more normal things again.

Sadly since then it feels that the direction of travel has been gradually downwards into worse and worse health. I returned to work in May as planned and was doing reasonably well on reduced hours but I just kept feeling more and more exhausted all the time. My employers have been fantastically supportive and I really couldn’t ask for more, I would just like to state that very clearly for the record. Unfortunately though in July I developed the symptoms of a serious flu and became quite ill again. I have been unable to work since.

It was at the end of April and during May that I first began to get the stomach pains and swollen feeling that had first landed me on an operating table back in September of 2015. I’ve been back and forth to The Christie for regular CT scans and blood tests though. They seem really happy with the outcome of the operation and say everything looks clear. It seems as though I am currently cancer free. Obviously that’s great news and I’m really happy about it, but why then do I feel as sick? Is it something else? What’s going on? This is a question it seems nobody is able to answer even now.

Since July I have been feeling pretty awful most of the time if I’m honest. I wake up each morning feeling more tired than I did before I went to bed. My muscles don’t seem to work, they ache like crazy and I have cramp despite not doing anything. My joints also fail to work at first and I can only describe the process as feeling like chipping ice off my body before I can begin to physically drag myself out of bed. My chest hurts most of the time as if I have a chest infection. My veins often swell and throb a lot in the arms and legs, visibly so. I thought this was the Lymphatic system probably but after an ultrasound scan the doctor assures me it’s definitely veins. It often feels like someone has wound a rope around my arms or legs and is pulling it. My eyes sting and most of the day it can be a struggle just to get around. The exhaustion is one of the worst things and I can only describe it as having a very heavy cold or perhaps a really bad hangover permanently, with no reason for either. Some days are better than others but sadly most of time I can’t really get out of the house, apart from occasional trips. I’ve been to see many different doctors and so far nobody seems able to explain any of this, despite a ton of blood tests and other investigations. So perhaps this explains my lack of activity online or offline for the last 6 months plus. As you can imagine I don’t often feel up to doing anything much.

I seem to end up constantly waiting for appointments and not really getting anywhere. I waited over 2 months for an “urgent” appointment with an Endocrinologist, when the letter arrived with a date for 8 weeks later it even said “urgent appointment” on it. I hate to think what happens if it’s not urgent I thought. So I finally got to see this guy at the end of October when he basically said he had no answers for me but he would do a blood test and to come back in a few weeks. The next appointment was December 22nd. When I went back to see him he just said he didn’t have any conclusive diagnosis and wanted to discharge me back to the GP. 4 months of my life pretty much wasted. So as you can imagine I’m pretty fed up of hanging around and not being able to do much. I haven’t been able to play my guitar at all really and I haven’t been able to play with the band since September 2015. My employers paid me sick pay and that’s been a real help but sadly that ran out at the beginning of this month. So although I still technically have a job I am on zero pay and have to go through all the regular benefits assessments and processes. Having watched the Ken Loach film “I, Daniel Blake in October I now feel a little bit like I’m starring in a sequel, perhaps titled “I, Daniel Lynch”. The paperwork and the amount of assessments and hoops they are making sick people go through just to attain the princely sum of £73 per week are unbelievable. Anybody who thinks people on benefits are living the easy life and free loading in luxury needs to be taught the reality of all this in my opinion. Anyway, I’ll leave it there before I descend into even more of a rant.

I’m actually very lucky to have a supportive family who help with shopping, cleaning and other everyday jobs. So I am far removed from the kind of conditions many people suffer. I’m thankful for that and I am also fortunate to live in a nice place. I just wish I could get back to having something more of a life, being able to go out, being able to work and so on. I’m sure that will happen eventually but right now it feels like it could be a long way off.

Sadly podcasting is still off the table, I don’t know if or when Rathole Radio will return but it’s really nice to know that people miss it. Thank you for your kind messages.

I am now being told by doctors that I have a condition with no medical test or diagnosis and no treatment, which seems akin to me to telling someone they’ve been bitten by a dragon or have an allergy to fairies and that must be causing their medical problems. It’s hardly scientific is it? I was actually told by one doctor to Google the term “medically unexplained symptoms”, don’t bother I can tell you the results. It means you are ill but nobody knows why essentially so tough, get on with it. Brilliant, thanks for that. I may not be a doctor but I do have a pretty scientific brain, I have a degree in Computer Science after all and I like to think I am reasonably intelligent. How people can look at an unsolved mystery and just say “nah, I can’t solve it. Tell you what let’s just chalk it up as unknown and move on hey?” is completely alien to me. Granted I have a large stake in this mystery because it’s my health that’s suffering, but where would human civilization be if our forebears had thought like that? Giving up without even trying. Still living in caves probably having never discovered fire.

So what happens now, where can I go from here? Well I am waiting on a referral (surprise surprise) from the Endocrinologist to a Haematologist to examine my blood. There are certain anomalies in the results with cell counts and other things but to be honest I’m not holding my breath. I still have more scans and tests at The Christie early in the New Year but they seem happy to say their work is done and everything was successful. So I am left considering other options. I have been trying to keep on research and I do feel there’s a solution out there for my condition. Perhaps not a cure but something that can help manage it and enable me to function to a reasonable level again. I suspect a chronic infection is at play and despite most doctors dismissing this, the truth is we just don’t know enough about the area. My immune system is either overreacting to something or I do have an infection and it’s fighting it. Despite all our modern medical advances we hardly know anything about the Lymphatic system and how the immune system really works or why. Let’s not forget that only a short time ago nobody believed stomach ulcers were caused by an infection that could be treated with simple antibiotics. One Australian doctor even had to deliberately infect and then cure himself before anyone would give his theory the time of day. So I am wary of people who dismiss new theories and research as quickly as many of the doctors I have met. I wonder sometimes if they still believe the earth is flat or perhaps the sun revolves around us.

There are some new tests and treatments that I will investigate myself in 2017 but sadly right now it feels like I am in a holding pattern. Unable to do much but sit at home and struggle to stay awake some days.

2016 has been a pretty rubbish year globally in a lot of ways and to be honest I’m in two minds about how to feel. There’s been much to dislike this year but on a personal level I survived a very dangerous operation and came through it without any major disablement. Despite the fact I’m still sick and I have more stuff to contend with, I could very easily have ended up with permanent brain damage and let’s be honest here I could easily have died. It’s not nice to think about but it’s the truth. So all in all it couldn’t have gone any better and I have to feel I haven’t come out of the year too badly personally. The difficult thing is having hoped that all of this was over. This time last year, while I faced difficult times ahead, I actually felt physically better than I do now and I knew there was a plan of action, a treatment for my ills. Now I’m stuck with no answers and no real direction to go in. If anyone out there has some medical knowledge or any of this rings a bell then all reasonable theories will be considered. One thing is for sure, I can’t abide an unsolved mystery and I will get to the bottom of this. I guess it’s just going to take a long time.

I hope this update hasn’t sounded too depressing because I really didn’t want it to be. I am a positive person and I never give up. I hope all of you are doing well and looking forward to the New Year, it’s not far away now.

Let’s hope 2017 is better for us all and I sincerely wish you all the best. I’ll try not to leave it 9 months until my next update I promise.

My Sincerest Best wishes,

Dan

35 comments on “2016: A Year Of Unsolved Mysteries
  1. Linuxmuso says:

    Dan, glad you still fight on while it would be easy to quit and give up after your health ordeals the last years. Miss all the shows, the wife and I used to enjoy them a lot. Thanks for all the quality hours you have given us so far and we hope you recover from this dastardly illness and infection in 2017, all the best from us to yours.

  2. John says:

    Feel really sorry for you. Love your shows. Hang in there.

  3. Barry Williams says:

    Thanks for the update mate I was wondering what was going on. Not great news but I am glad you are facing it quite well considering. If the doctors can’t figure it out I hope you do. Wishing you all the best and an answer to what ails you hopefully with a plan of action. Keep your spirits high and keep working the problem (when your body and mind allows). Otherwise be kind to yourself.

  4. Tommybobbins says:

    Thanks for the update Dan. We’ve missed you. Keep on fighting for an answer and 2017 will bring a diagnosis and the cure.

  5. Carlos Bertholdi says:

    I was a Linux outlaws listener, I wish you well and hope you find a solution soon. After surgery, usually people take antibiotics, try some fermented foods (sauerkraut, milk kefir) are some probiotics, to replenish health gut microbes, that might help you feel better.

  6. Mike S. says:

    Hey Dan,
    I’m terribly sorry you’ve had such an awful year. Mother Nature is callous. I’m guessing you and your physicians have explored hundreds of options, but I want to mention that a friend of mine has a rare form of Vasculitis that sounds somewhat similar to what you’re experiencing. If you haven’t looked into that, it may be worth a shot. Best of luck.

  7. Pete Dtean says:

    Thanks for the update Dan – I wish you all the very best of health. I’m hoping you come across a medic who actually gives a toss really soon…

    Hopefully a better year awaits for all of us!

  8. Hanna says:

    Thank you for the update. Hopefully there will be some sort of answer! All the best for the future!

  9. Torin says:

    Cheers for the update Dan. I hope your health improves soon.

  10. sorry to hear your bad news, I know from personal experience that long term sickness really sux, to have no answers is also tough, hope you get through this soon.

    • Dan says:

      Thanks everyone for your comments and good wishes. A number of people have mentioned ME and Chronic Fatigue Syndrome to me which I am investigating, thanks for all the other suggestions too.

      Some people have offered to send money and while I really appreciate the offers, please don’t do that. I’m doing fine honestly. If you do feel you want to give money to anyone l would ask that you direct it to a local charity or food bank, they are helping people in real need and deserve all the support possible.

      Thanks again and happy new year to all!

  11. Amy H. says:

    Man, sorry to hear that. I miss Rathole Radio too, but you gotta get better.

    Cheers, and here’s to hoping the new year brings good things.

  12. Andy C says:

    So sorry to hear you’ve endured this horrendous period, Dan. I dunno. I might beg, steal and borrow and go private for a second opinion. I can’t believe the Christie have almost washed their hands of you.

    • Dan says:

      Hi Andy, thanks for the good wishes. The Christie have been great to me and their treatment was excellent. I just wanted to say that. They are scanning me regularly and doing blood tests but since they can’t find any cancer now there isn’t a lot they can do. It looks like they’ve dealt with the cancer and that’s the main thing. They are making sure that doesn’t come back and I’m thankful for that. It seems the problems I’m having now must be something else but so far all the tests are clear and it’s hard to know which direction to go in. I have seen a private doctor and they didn’t get any further.

      I’m considering some other options and there’s still things to explore which probably involve paying to go to Germany or elsewhere.

      Hope you are good, take care, Dan.

  13. John McGrath says:

    Hang in there, Dan. We will be around to listen to RR when it comes back.

    Take care, and don’t let it get you down.

  14. Daniel Moore says:

    Thanks for the update. I’m sorry to hear it. I just downloaded all the RR shows the other day to tie me over for a while. Miss your sense of humor and your taste in music. Anyway, I hope you feel better. If you need financial support getting to Germany, don’t be afraid to ask.

  15. smaudet says:

    Hate to ask…

    But have you checked for bone cancer? Dunno that a normal x-ray scan would pick those up, looks like a special one is needed:

    https://en.wikipedia.org/wiki/Bone_scintigraphy

    If you think its something in your blood, and it seems to be causing exhaustion, it sounds like it might fit. Tumor in your bone marrow putting out nasty stuff in your blood.

    From wikipedia again:

    “The most common symptom of bone tumors is pain, which will gradually increase over time. A person may go weeks, months, and sometimes years before seeking help; the pain increases with the growth of the tumor. Additional symptoms may include fatigue, fever, weight loss, anemia, and/or unexplained bone fractures.”

    Hope it isn’t, and best of wishes to get better. Sounds like its been rough. Get better! I’m still waiting to hear you back on GNR!

    • Dan says:

      @smaudet – Thanks for the tip, I will check it out but I’m pretty confident it’s not bone cancer. The doctors in Manchester have been closely looking at all kinds of cancers and can’t find anything, which is really good in some ways but also not good because it still doesn’t help find out what actually is wrong.

      Thanks also for the good wishes 🙂

  16. Emilien Klein says:

    Hey Dan, I wasn’t aware of your operation and all, I’m thinking a lot about you now! Your description of the fatigue makes me think about how Tim Ferriss described him contracting Lyme Disease. Don’t want to play doctor, but maybe an option to check for that? All the best and strength, man!

    • Dan says:

      @Emilien Thanks for the good wishes. Lyme disease is on my list of things to check definitely. It doesn’t have much treatment options right now but there are some potential therapies. It’s also not always easy to diagnose but I’ve heard there are more precise tests available in Germany. So I may even travel.

  17. Dave Potter says:

    Hi Dan. I’m really sorry that things haven’t gone better for you and I hope things get better soon. Like everyone else I miss rathole radio but your health is of far more importance than the podcast.
    I don’t have any medical knowledge but since you asked for any related input I thought I would add the following.
    We have a family friend who underwent cancer treatment about the same the as yourself (with chemo) and came out the back of it with the cancer apparently no longer a problem. However, physically he continued to feel very ill, just like yourself. This went on for at least 8 months until a doctor decided to start him on a course of antibiotics. Subsequently he is feeling better and more active, even getting back on his tractor (he is a farmer).
    I was given a book for Christmas called Black Box thinking you may want to read. I hope you get the mystery solved soon.

    • Dan says:

      @Dave – Thanks for the tip, I have found at all points I’ve felt better when on antibiotics and my theory is that it’s suppressing some kind of infection. Why the doses of antibiotics aren’t killing the infection but allowing it to come back after they’ve left my system is not easy to explain. It’s something mainstream medicine doesn’t accept in the UK but I do think it’s a good lead. So thanks for the good wishes and the information, it’s all valuable to know. Best wishes, Dan

  18. Nina S says:

    Hey Dan, so sorry to read about your health.
    I used to be a dedicated Linux Outlaws listener for years. I vividly remember how having the show running in the background helped me through the most tedious moments in writing my thesis.
    I hope things take a sharp turn for the better very soon and wish you a happier 2017!

  19. Adrian Evans says:

    There is a medicine called LDN, Low Dose Naltrexone, which is in limbo regarding prescriptions for reason I won’t go into now, It has helped a lot of people with weird and unexplained problems.
    It’s not pushed by Drs cuz it’s quite old and out of copyright so makes no money for the drugs companies.
    Have a look on http://www.lowdosenaltrexone.org/
    may be worth a go.
    Happy to give further info from experience if you want.

    • Dan says:

      @Adrian – Thanks for the link, I have heard about LDN and I know it’s controversial but it’s definitely worth investigating more so thank you 🙂

  20. Rich.T. says:

    Hi Dan,
    I’m an LO fan and have known about your illness for a while, but haven’t checked out this blog in a while. I hope you are well…

    I followed a link posted by Joe Ressington on the Telegram group for his new podcast “Late Night Linux”.
    https://twitter.com/latenightlinux/status/819662001949523968

    Please join the group and say hello to everyone; all the usual suspects are there, including MegaSlippers. 🙂

    Your situation came up during a discussion between Joe and Adrian Evans at 04:20 this morning (14/01/17), where Adrian brought up his life-long health issues and mentioned to Joe a medicine called LDN:

    “There is a medice called LDN, Low Dose Naltrexone, which is in lImbo regarding prescriptions for reason I won’t go into now, It has helped a lot of people with weird and unexplained problems.”
    “It’s not pushed by Drs cuz it;s quite old and out of copyright so makes no money for the drugs comanies.”
    “I won’t preach but maybe worth a look ..
    http://www.lowdosenaltrexone.org/
    “My wife has MS, within two days of taking it went from basically living in bed/chair to going to the pub to see a gig.”

    I hope you check this out, but I also have a suggestion regarding a couple of the comments above, regarding antibiotics and Lyme disease:

    As far as I know, the “cure” for Lyme disease involves many grueling courses of antibiotics, which will leave your gut biome and immune system decimated.

    NB: The only reason I know anything about this stuff is through podcasts and there is a fair bit of “LA Hippy-Dippy stuff”, but the mention of Lyme disease and antibiotics rang a huge bell for me after I read all of the above.

    Please take a look at the following links and give it some thought:

    https://youtu.be/KNobzrnSRMc?t=5110
    http://jrefan.com/the-joe-rogan-experience-episode-781-with-kevin-rose/

    https://youtu.be/yKy-PYCn6mo?t=1146
    http://jrefan.com/the-joe-rogan-experience-episode-781-with-kevin-rose/

    I Googled “Rogan Lyme”

    Take care of yourself, Dan.

    Rich

  21. Rich.T. says:

    *The second link. :s

  22. Torin says:

    Hi Dan.

    Maybe this is worth a watch:

    What happens when you have a disease doctors can’t diagnose | Jennifer Brea
    https://www.youtube.com/watch?v=Fb3yp4uJhq0

    Cheers man.

  23. Jonathan Gregory says:

    Sorry to hear you’re still ill; I hope 2017 turns the corner for you. I always loved LO & Rathole Radio but lets all be honest neither is as important as your health. Hang in there sunshine.

  24. Windigo says:

    I’m sorry to hear you’ve been feeling so lousy, man. You don’t deserve this crap. 🙁

    Here’s hoping that they can find a treatment to get you back on your feet! 🙂

  25. Steve says:

    Hi Dan,

    Very sorry to hear of your health issues. I miss listening to you on LO and FLOSS weekly.

    My wife suffers from fibromyalgia which is often linked with chronic fatigue and has some similarities to what you describe (and lymes). The LDN has definitely been beneficial for her.

    A couple of other things:
    Do you have dental fillings? The mercury in the old silver ones is poison. She had her fillings replaced.
    Have you been tested for food allergies? She was and found several things she was allergic to. Cutting those out of her diet has helped.

    It is hard to say how much any one of those things have helped (she has tried a lot of different things), but overall she has shown dramatic improvement. She has even started skiing again.

    Feel free to contact me if you want any more details. Not surprisingly, she has a much better memory for it all than I do.

    Best wishes,
    Steve

    • Dan says:

      Hi Steve, thanks for the extra information. Any possible leads are always welcome. I’ve been doing some research into Fibromyalgia and I will see if I can rule it out at the very least. I did try low dose naltrexone (might be spelt wrong) years ago but it didn’t seem to help in my case unfortunately. I’m fairly certain diet and perhaps a problem in the intestines is related to all this, that’s a good point. I have been doing a pretty strict paleo diet for the last 8 weeks and I am hopeful that can help. Really glad to hear your wife is doing well, not sure I’ll be doing any skiing anytime soon but I hope she’s enjoying it! Best wishes, Dan

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