Monday, February 24, 2014

The end of the road

This may be a rather long post because I have a lot to say. I feel as though I have been bottling up certain things for a long time and it time to just let  it out.

In the last 4 years I have been diagnosed with ME/CFS, Toxic Encephalopathy, MCS, POTS with NMH and Lyme like disease which may include Boriella, Babesia, Baronella. I have now also been diagnosed with a new one which I will discuss shortly. Now to the outside this would look like a simple case of bullshit or hypochondria. To an insider like me and many of you it is clear that the lines are very fuzzy and that these are all most likely the same stupid illness. How did this happen? Well the problem is that all of these illnesses have overlapping symptoms, there are no reliable tests for any of them and the Doctors that diagnose have very little support from colleagues and the medical system and very little time to actually sit down and examine our extensive symptoms and histories.

So, people like me end up with a long list of ‘maybe you have this, or this, or this’. There are two big problems here. Firstly it really fucks with your psyche to be severely ill 24/7 year after year and not really even know what ‘it’ is. What am I supposed to tell people? Even though I am housebound and exist in a bubble I am constantly having to disclose my status to people … and how do I do that when I don’t know what it is? I find if I say I have ME/CFS people say what’s that, so then I have to say Chronic fatigue Syndrome and they instantly do the eye roll and the conversation is over. MCS is  exactly the same, people just don’t believe it. If I say Toxic Encephalopathy then people say what’s that, and I can explain my body and brain have been damaged by chemicals, which I completely believe is what happened … but I have never received any treatment or the slightest bit of interest from any Dr regarding this. Even the Dr who made the diagnosis never mentioned it again. So it almost feels fake to tell people that is what’s wrong with me. Lyme Disease does and could have caused all of my symptoms, but do I have it .. I have serious doubts. So what do I tell people. Often I just say I have a neuro-immune disease and try to skirt around it. But many people want more info … if I say my diagnosis is not firm people just think that I must be faking it, otherwise of course I would have a proper diagnosis. If I tell people the long list of things I have been diagnosed with then people think I am faking and just collecting illnesses for attention.

The second big problem is that each of these diagnoses’ come with treatment protocols that all have risks and side effects and often make people sicker. I have tried many many things for the various illnesses and most have made me sicker, some in scary and serious ways. The last big mistake was taking Plaquinil which is a kind of antibiotic which can and did cause me serious and long lasting muscle weakness. Would you be dumb enough to try chemotherapy for diabetes? No, you would only have it for cancer. But that is what many of us face. We are guinea pigs trying all sorts of dangerous drugs because we simply don’t know what we have, our Dr’s don’t know and we are so ill that we are desperate to try anything that might help even a little, regardless of the risks. Because, lets face it, the only thing scarier than dying from an experimental treatment is living with a debilitating mystery illness.
My energy is very limited. Over the last 4 years I have dedicated the majority of that energy towards getting better. I research possible diseases and treatments, I study physiology and biology so I can perhaps make links that the Doctors have missed, I talk to other sick people and learn from their experience, and I share my knowledge with others. I maybe have an hour or two each day where I can function. Perhaps its time to stop spending that time playing detective and instead try to spend that time living a life. I Feel that at this point it is unlikely that I will ever know what is wrong in my body. I will die prematurely. I am thinking I don’t want to spend what time is left digging for something that I will never find. I want some happiness and maybe I can get it for an hour a day in simple ways. I have been thinking about this for some time and I think I have a new plan.

There are a couple of things already on my radar in terms of illness and treatment so I figure I may as well address those so I can say that I had one final go, and then throw in the towel and start living my little life instead !!

So, another diagnosis. Yes, another one! It’s a genetic disease called Familial Mediterranean Fever. To have it you need to have a specific double gene mutation. It’s rare but in my recent researching and digging I discovered I have the mutations. I also am a textbook case, so finally I do actually have something that can be clearly diagnosed and not disputed. The classic symptoms are Fevers that start often at an early age. For me it started when I was about 4. I had these frequently through my childhood and they were not attributed to anything usual. They persisted though less frequently thought my teenage and adult years and then when I got sick with the mystery illness 4 years ago the once again became frequent. I now have then at least once every two weeks. Each time the fever is accompanied by bad abdominal pain and diarrhea for several days. Since getting sick I had just thought this was part of the mystery illness, but I know now this is in fact a separate entity. Untreated it will eventually cause kidney failure. Treatment is a drug called Cochicine and is very effective for most people. I started the drug a few weeks ago and typical me … I cant tolerate it. It caused bad bad bad kidney pain and constant abdominal cramping. So I’m not yet sure what I will do with this, but its still on my radar for a short while. If a way to resolve it does not present itself soon I will just drop it and stop wasting time on something else I cannot fix.

The last thing I am planning on doing is one final experimental treatment. It is something that has given good results for a subset of people with ME/CFS and with a bit of organizing is not hard to do. I am not going to say yet what it is but once I start I will let you all know.

If it makes me sicker or does nothing then it’s the end of the line. No more treatments or research, I am just going to start trying to find ways to enjoy the small bits of wellness that I have.

I haven’t said everything I wanted to in this post but I have written all I can for now, and you have probably read all you can for now …

Saturday, January 11, 2014

2014, what's the plan man?

Well I am writing this post as much for me as I am for you. I need to unmuddle all my thoughts so I can work out what to do next, and writing it out is the easiest way for me.

Since Christmas I have been in misery guts mode, moping around, woe is me and all of that. I had some bad news in regards to my current treatment plan for Lyme which probably meant I would not be able to continue down that path. My Dr had an unfortunate run in with the medical board and they banned him from treating and diagnosing Lyme. I do have enough of my current anti biotics to continue on for a few months, but as I said in my previous post I have had some problems with those medications and so I don’t feel comfortable continuing on without Dr support. It’s just too dangerous for me. I do believe that this mess with my Dr will be resolved in some round about way and I will be able to get back onto some form of treatment, but until then I need a plan ….. there must be other things I can work on in the meantime.

Firstly I think I should review facts. The things I know for sure. I had a serious chemical exposure leading up to my illness, this was confirmed by blood tests. These chemicals are fat soluble and so are hard for the body to eliminate. It is very likely these chemicals are still floating around in my organs and tissues. They cause neurological damage.  So I could be doing more work on that.

What else? Um …. I know that when I moved house a year ago I improved significantly very quickly. I am 99% convinced this was due to getting away from mould at the old place. It was severely water damaged and also had a flat tin roof with no ceiling cavity and apparently these are perfect breeding grounds for mould. I also know that I was tested and have a moderate mould allergy. But, I was never tested to see if I actually have mould in my blood etc. maybe I can investigate such a test. I can certainly look at ways to help remove mould and other mycotoxins from the body.

Hmm, that brings me to the next issue. Detox. I have known all along I have major problem with detox and methylation. I really need some proper testing in this area. There is a functional liver test which look at detox. The reason I haven’t had the test is because they give you caffeine and then the test looks to see how well or how fast you liver processes it. Caffeine is a big no no for me because I have POTS. Basically this means if I have caffeine my heart will go seriously bonkers. Also I know that even a tiny amount of caffeine makes me crash badly (a cup of tea for example) .. this in itself suggests my liver struggles to process it, which is exactly the point of the test. I am thinking maybe I just need to risk the heart thing and prepare to spend a week in bed recovering … I probably really need that test.

What else? Gut problems have always been a major player for me. I have had endoscopies, hydrogen breath tests etc and had some success, but some underlying problem is still a mystery. I haven’t had testing for leaky gut and people have been throwing that term at me for years. I can have a test for that.
the only other thing I can really think of is Amino Acids. I have never had these tested and have always suspected something wired going on there. So that is another test I can have.

Ok, so plan is to get more tests and then try and do some work on detox and gut mostly.

I have been sick 4 years now and it’s interesting that whatever this disease is it is still progressing. Symptoms are ever changing but rarely do I actually feel better, just different. I have more energy and muscle strength now, but way more pain and hot flushed/body temperature disegulation. I never knew there were so many different kinds of nausea and fatigue. As a well person you just think there is one type, but as a sick person who sees this everyday you realize there are many many different versions of these common symptoms. Very interesting, but total shit at the same time!

If anyone has experience with any of these tests or issues then your comments would be appreciated :)

Wednesday, December 18, 2013

Scary scary reaction to Lyme Disease drug.

How is my treatment for Lyme going?  I wish I knew the answer to that question. I was having a few days where there were glimpses of feeling well, but then a week ago I had a set back. I had been on Plaquenil for 2 weeks. Started on a very low dose and was building up to full dose of 400mg a day. Last Wednesday I got to that full dose and when I woke Thursday morning BOOM! I was the sickest I had been in over a year. The most extreme muscle weakness imaginable, massive fatigue, brain fog, headache, all over body ache, heart palpitations and diarrhea, just horrible and very scary to be back in that place. My initial assumption was either I had picked up a new virus or bug, or an old one had re-surfaced. I felt devastated. Even before I had started the Lyme treatment I had made quite significant gains within the last year, and now it was all gone. I emailed my Dr and he suggested i reduce the dose on all medications and I get a stool sample for testing so we can see if it's a new bug.

Three days later and no improvement with any of the symptoms at all. Then I did some googling and discovered that all of these symptoms can occur for some people as a reaction to Plaquenil. DOH! I immediately stopped the drug and the next morning the diarrhea had stopped but other symptoms were still there. I felt terrible but I really needed more info so I posted on Facebook and a few people gave me more clues. It seems Plaquenil is in a class of drugs called Quinlones. These drugs deplete the body of magnesium. Low magnesium causes muscle weakness, fatigue, headache etc. My magnesium levels (and most people who also have a diagnosis of ME or CFS) have always been low anyway and from time to time I take a supplement to help with this. I dont take it all the time because I find that after a while it upsets my stomach. Anyway, so I jumped straight onto supplementing with magnesium and the next day I felt soooo much better. Still weak but no where near as bad. The last couple of days have waxed and waned and google says it can take some time before the muscle recover, and I suspect this is going to be the case.

The other annoyance is that without the Plaquenil some of the symptoms it had helped with have returned big-time. Nausea is bad, pain is bad.

I am thinking once my magnesium levels are up enough and I feel that my muscle strength had returned then it might be worth trying again at a lower dose. The Plaquenil was definitely helping with some things.

This is the risk with treatment. It's scary and while you may get better, you may get worse, a lot worse. But you have to try. The next drug on my list will be Azythromyacin, which is another scary drug. I read last week that people with heart issues are at risk of death within the first 5 days on the drug. Oh joy!!

On a more positive and cheery note, the music project 'Dropkick' that I have been working on with fellow sicko Cusp has been going well. As a special Christmas treat we have recorded a cover version of 80's band Dead or Alive's song You Spin Me Round (like a record), and we are giving it away for FREE. And to make it actually have a purpose (rather than just for fun) our record label are participating a a huge Dutch fundraiser for RED CROSS. So, when you download our song you have the choice to either enter a value of zero if you'd like it for FREE, or if you are feeling charitable then you can enter an amount you like and then that money will be donated to RED CROSS. All the details and links are on our Facebook page. Please listen and download, it might give you a laugh, we enjoyed making it, and donate if you wish ...

Go here -

Friday, November 1, 2013

Dropkick - Trapdoor

Well after the last few months of crappy health I finally have something positive and fun to share. Despite being sick I have been slowly chugging away at some music projects. Quite some time ago my UK internet buddy Cusp and I decided to have a go at writing some tunes together. We came up with a track called Trapdoor and once it was finished and recorded we thought it was actually pretty good. A fun track paying homage to 70's disco. We decided we'd like to release it and so we did a couple of remixes and we also got some other artists to do remixes. In total there are 8 very different versions on the EP.

The planets must have all aligned because once we had the 8 tracks a Dutch record label called Noisj said they would like to do a CD and digital download release of it. I think the label owners words were something like 'this is just to weird not to be heard' and 'I think there is a huge market out there for you'. Noisj usually sell electro music with a harder edge but they were so keen that they said they would start a new division to launch the EP. So the EP is coming out on the new sub-label 'N.R.G.T.C'.

The official release date for CD and digital download is 28th November 2013, but it is available NOW on pre-order. By pre-ordering you will help Noisj to get an idea of how many CD's to manurfacture. You can of course just pre order the digital download if you dont want a CD. Oh, also if you pre-order you will immediately get 2 tracks off the EP digitally. The EP will be available through itunes and Amazon etc after the 28th, but for pre-orders you need to go to this link -

We also have a fun video for Trapdoor -
The video features and was produced by artist Mitsi. B. Mitsi also painted the cover art for us. Her website is here -

If you are on facebook the please like the Dropkick page -

Lastly, please share this around ... aside from how much fun its been for Cusp and I to do this any money will make will will help with medical expenses etc.

Yaaahhhh !!!!!!!

Monday, September 16, 2013

Abx are go !!

Today I took my first Minocycline antibiotic for Lyme. I am starting very slow and low. Half dose - 25mg and just taking it every 3 days. As soon as I can handle that I will start increasing dose and frequency. I know to expect a bad hex reaction ..... I guess tomorrow all will be revealed ... just how good or bad it's likely to be.

If i just cannot tolerate (quite possible because of my sensitive gut) then I will stop and instead try Bicillin injections. This will take the gut out of the equation and will also lessen any negative effects on my liver.

As a side note, I started Diflucan just after my last post. This was supposed to be in preparation for the Minocycline. I wanted to make sure any yeast/candida was under control before starting. I did have a herx reaction the first day or two, but not bad, and then I got horribly sick ... which was I think my liver saying Nooooo! I had to stop, just couldn't handle it. So will have to come up with a plan B for that.

Anyway, wish me luck ... I will probably need it :O