"Without treatment I can see no future for you"

Since December 2009 I have had diagnosis of ME and have been completely housebound since about June 2010. In the last 18 months I have seen many of my local Facebook friends who also have ME get diagnosed with Lyme disease. For a long time I kept thinking ‘no, I couldn't have Lyme because I don’t ever remember being bitten by a tick’. Over time as I picked bits and pieces of info from people the doubt started to creep in, maybe I do have Lyme. So why not have an appointment with a Lyme literate Doctor and find out? Well there are only a handful of them in Australia and none of them were anywhere near me. It’s made very difficult for Doctors here to consult with a patient over the phone or via Skype unless you have had one initial face to face consult. So it was just impossible to talk to a Dr who could give me the answers so I just put it out of my head.

A Lyme Doctor whom a few of my friends were seeing moved his practice a little closer, still an hour and a half’s drive but maybe there was a way. Who was I kidding, I couldn't even tolerate the 5 minute car ride to my local GP! Then something extraordinary happened …. A friend spoke to the Doctor on me behalf and he agreed to drive the hour and a half to come and see me at my home. This is completely unheard of in this country. He spent an hour with me and by the end of the consult he seemed pretty certain that I did in fact have Lyme Disease.

He ordered a mountain of blood tests, mostly regular stuff but he needed to get the whole picture because a Lyme diagnosis is a clinical one, it does not come from any one test. My results came back eerily clean for someone so ill. There were however two things that stuck out. My CD57 was quite low (CD57 is an indicator of how a specific part of the immune system is functioning) and my testosterone was very high. Low CD57 is commonly seen in people with Lyme so this clue helped to confirm the good Doctors diagnosis. The high testosterone was just odd and didn't really correlate to anything … but I suspect in time it will make sense.

There are several actual ‘Lyme’ tests available. None in Australia really give an accurate result. There is one in Europe and one in USA which are preferred options. The problem with these though is that they are dead expensive and still do not give an accurate results for many reasons. One reason is that these are blood tests, and the Lyme often move into the tissues and don’t live in the blood, so looking at blood is not going to find it. We decided to send my blood to USA at a cost of over $1000. If it came back positive we would know for sure we were on the right track. If it came back negative we would just have to keep assuming that we were on the right track.

My test came back negative. Not what I was hoping for but bad luck I guess. After receiving the result the Doctor said to me that he is certain I have some sort of stealth infection, probably Lyme or something similar, so we should move ahead with treatment plans. He said ‘without trying treatment I can see no future for you’ …. That statement really hit me hard. I think even though I have been so desperately ill these last 3 years I have still been in denial about the fact that this will be my life for ever. Who wants to exist like this for ever? Treatment is always a risk but what choice do I have really? Currently I am relying on my parents and a friend to survive. They do everything for me that I cannot, and the list is long. Perhaps we can limp along like this for a few more years but then what? My parents are in their 70’s and my friends health is also not good. I need to put on a brave face and just leap. Treatment may make me well, it may make me sicker, it may kill me …. But I have to do it.

The Doctor is talking IV antibiotics. I have another consult with him this week and will discuss further …. So stay tuned for part two!

Back to the drawing board

In my last post I talked about the problems I was having in regards to chemical sensitivity and flooring. I found a foil vapour barrier in USA which my friend James in NYC bought and sent to me. It worked really well, it blocked the yucky smell coming from the floor boards. 

I had planned on putting down a very low VOC bamboo flooring that I had found, but when I got a box of it I discovered that it was intolerable, even after letting it outgas for a few weeks it didn’t seem any different at all. Then I found a cork flooring which sounded great and the sample I was given was pretty good, hardly any smell and I didn’t react to it. I bought a few boxes and had it laid in the spare bedroom upstairs as a test. That was close to 4 weeks ago and I can’t go anywhere near it, I can’t even leave the door to that room open because the smell comes all the way downstairs and makes me sick. In time it would probably outgas and be great, but I just don’t have the time. I am living and sleeping in my lounge room downstairs which is ok when it is just me here but I am wanting to start a new treatment and it is certain to make me sicker which means I may need someone to be here to care for me. That wont be possible unless I can actually get into my bedroom upstairs so I can have quite and not have someone else in my space. So I really need to find a solution and get something on the floors ASAP. I’d be happy to just leave the bare wood except it is not sealed and it smells awful so it must be covered.

Tiles would be the logical solution right? I thought so, and I am still hoping so but you still need an adhesive and grouting both of which contain VOC’s. Ugh! It just seems impossible to find a solution.

My plan now is to investigate and do some testing with tiles. PLEASE let this be the answer, I am at the end of my rope with this and I am driving my poor parents and friend Michael nuts with all this drama. They are the ones who are having to do all the running around and keeping my spirits afloat. Boy, where would I be without them!!

Flooring for MCS

Well here I am in my new home. Moving was a monumental effort for all involved and yes my health did suffer. A crash was inevitable but luckily it wasn't as bad as it could have been. The good news is that whatever it was in my old place, mold or some sort of mycotoxin, it does not seem to be present at the new place. My brain is able to function a little clearer and some o my old symptoms are gone. But like every good story there needs to be a balance .... and so to balance the good there definitely has been some bad. The really bad news is that the bad stuff has not been resolved and I am going around in circles with it.

The previous owners had some lovely cats that pissed and sprayed over every inch of carpet upstairs. Mum and Dad did everything humanly possible to get the smell out but with no luck. In the end the only solution was to rip the carpets up. But ... the smell went right through to the boards below. After much searching I found a foil vapor barrier product in USA that promised to be MCS friendly. My friend James in NYC ordered a roll for me and forwarded it on. My Dad started laying it yesterday and hopefully it will block the smell and will not cause me any ill effects.

Part two of the drama is that I am yet to find a suitable flooring to put down over the foil. Everything has VOC's, solvents and formaldehyde. Bad bad bad !!  I managed to find a natural jute (carpet) that looked promising but then found out it was backed with latex which is no good. Regular carpets are treated will all sorts of nasties. Someone suggested bamboo. I did some googling and came across a click system bamboo flooring that required no gluing, was rated as extremely low VOC's and it just sounded great. I got some samples and it STINKS!!!!  It doesnt smell chemically but rather fruity. Initially I thought it would be ok and the odd smell would disappear quickly, but 6 weeks after getting the first sample and the smell has not budged. I got some larger samples and found that after being in the same room for 20 minutes I started to feel very fatigued and have more neurological symptoms and ultimately just feel yuck. I tested it 3 times on 3 different days just to be sure.

 Foil vapor barrier

Cat pissy smelling floor boards

So it's back to the drawing board. I have no idea what I am going to do. My friend Mark suggested trying to find something second hand or something that had been sitting around in a warehouse for a couple of years so it would have already outgased. Good idea. I am going to start emailing people asking ... but otherwise I am back to having no clue what to do. Even tiles are no good. The adhesives and grout have solvents in them. Solvent free ones seem to be available in USA but nothing here in Australia.

I really just want this resolved so that I and my parents and friends can finally just relax for a while.

Any suggestions  for flooring appreciated.

Keep it clean

Never underestimate the importance of domestic cleanliness. Two weeks ago I started to decline into yet another pit of misery. Same old story of waking up feeling like I have been hit by a truck, poisoned and unplugged.  About a year ago I started to see a distinct pattern with this. Every 2 weeks my cleaner would come and vacuum, do my laundry and change the sheets on my bed. The following day I would always awake with one of these flares and they would last usually 3 – 5 days. After some time I discovered that the ‘clean’ sheets that were going on my bed were actually poison to me. My cleaner would wash my dirty sheets and then hang them in my garage to dry. They would stay there until he returned 2 weeks later. The garage is dark, damp with no ventilation. During the time the sheets hung there they were growing mold. The clean/moldy sheets would then go on my bed and after sleeping on them I’d be toxic again the next day. I bought myself a clothes dryer and the problem was fixed, clean sheets would equal no crash for me. It was great.

During the last 3 years I have had similar type episodes but they would last weeks and would be much worse much more debilitating. Similarly it turned out that these episodes were also due to a build up of mycotoxins. What kind I am not entirely sure, there is no visible mold in my home but it is water damaged from a water pipe that leaked severely and went undetected for a year. What I have found is that if my cleaner doesn't come on one occasion then the month long wait is too long. Whatever ‘it’ is it starts building up and I get sick. This last flare was a perfect example. My cleaner didn't come and I started to spiral down after a week until I couldn't move from bed, couldn't use laptop or have TV on. Horribly ill. My parents came and cleaned like only your loving parents would do. They vacuumed, scrubbed, mopped … and within hours I started to feel better. I went to bed that night and realized that they had vacuumed my bedroom carpets and dust and whatever else was disturbed. The room smelled musty and when I woke in the morning I was even sicker!  I opened all the windows and left the fan on to air out the dust and within a day I was hugely improved. Within two days I was almost back to my version of normal. Fantastic!

Never underestimate how sick dirt/dust.mold.micotoxins or whatever can make you. Learning this lesson has been a big help to me. Of course keeping my place clean doesn’t change the fact that I have ME and will always be ill, but it’s great to know that this is a big trigger for me. So if you haven’t seriously made an effort in this department it’s worth a go.

A quick sidenote before I go …..

My friend Vicki who is a quadriplegic is about to have her government funding cut and wont be able to pay for everything she needs to live, including her carers. Me and some other friends have been trying to raise some money to help Vicki and we found a great opportunity to win her $5000. If you are an Australian resident then PLEASE vote for Vicki and help her win! The link to vote is here - http://sunsuperdreams.com.au/dream/view/vicki-can-no-longer-afford-to-care-for-herself

Also if you are on facbook you can show your support by liking the page I set up for her https://www.facebook.com/HelpingVicki

And the page to donate if you have a few spare $$$ (don’t be afraid to donate a tiny amount, it ALL adds up and will help Vicki) - http://www.helpingvicki.com/

Thank YOU !!

Fear and other fun stuff

This disease is fucked. I am tired of feeling angry at the world and tired of being terrified to wake up each morning.

How would you feel if your entire life vanished before your eyes and the only thing you could see in the future was a big scary void. The world that you used to participate in is still happily spinning around while for you all it now consists of is 4 very familiar walls day in and day out. Being in solitary confinement in prison would be easier to deal with. The only difference is that in prison you don’t feel devastatingly unwell every second of every day and you know that come tomorrow you will still have a roof over your head and someone will arrive with food for you.

The last few weeks I have been in a scary relapse. I am back to not being able to shower or bathe or prepare any meals. Standing is very difficult, moving is painful and sitting up makes me feel dizzy and nauseas. Most people have a fear of death. I no longer have any fear of dying but my fear of living is enormous. Every night I go to bed and wonder if tomorrow will be the day that I can no longer stand at all, or if my reflex to swallow will be gone and I will need to be tube fed, or if I wont have the strength to lift a glass of water to my mouth.

Imagine if this was your life and when you talked to Doctors about it all they could say is they have no idea what is happening and that you should get some rest.

You’d probably be a little pissed off and more than a little terrified.

Oxygen update

Since my last post about oxygen therapy I have had many people asking for an update. So here goes …

My initial goal was to follow Dr Jamie’s suggested protocol of 30 minutes a day at a flow rate of 10 litres per minute using a non rebreather mask. This is supposed to be the closest you can get to using a hyperbaric chamber. When I tried this method I knew instantly that it was way to much for me and so I only did 5 minutes. Within a few minutes of stopping I found that I was having trouble breathing. There seemed to be lots of theories about why this occurred floating around, such as the lack of CO2 that using a non rebreather mask causes can interfere with the bodies natural breathing mechanism, or that it was an allergic reaction to the plastic in the mask, or that it was some kind of asthma induced by the oxygen. I haven’t been able to work out the reason so instead I have spent the last 2 months experimenting and trying to find a method that works for me.

A more common problem which I also encountered was one of overdoing it. It’s a fine line between not enough oxygen to do anything and too much which causes a typical PENE (post exertional neuroimmune exhaustion) type crash. For the last 3 weeks I have been settled on doing just 5 minutes per day at 10L/min without a mask. Instead of the mask I just hold the tube right in front of my mouth so I wouldn’t be getting just pure oxygen but this seems to work for me.

In terms of benefits I am finding that if I schedule the oxygen for after I do something each day then it stops the PENE that I would usually get. For example, having a shower will usually cause me to feel crashed the following day, but if I do my 5 minutes oxygen immediately after the shower then I don’t get the crash. So it is definitely worth the effort for me. Using oxygen the way Dr Jamie suggests should in theory help the body repair over the long term. Because I am using such small amounts I am not sure that will occur, but I must say that I am optimistic about it and over time I may be able to slowly increase the amount that I use.

So the oxygen therapy gets a thumbs up from me. I have tried many many things and most have either done nothing or made me worse, so this one is a keeper. I think the downside for a lot of people would be the cost. Oxygen concentrators are expensive to hire and to buy. I was really lucky to get one dirt cheap on ebay. 

PS, the fab elephant oxygen mask was created by Tom Banwell and you can visit his website here - http://tombanwell.blogspot.com.au/2011/01/why-i-make-steampunk-gas-masks.html

Oxygen

Its been quite a while since I posted. I have been taking stock and deciding where to go from here … again! After returning home from hospital in March my health improved quite significantly. I am still housebound but am now making many of my own meals, showering every two days, spending time on my laptop and just feeling more comfortable. Having said that, I have reached a plateau at this point. Why did I improve? I wont know for sure but what I can tell you is that while in hospital it was discovered that I had a pre-cancerous nodule on my thyroid. Despite my being adamant that I was suffering thyroid type symptoms the Endocrinologist said that all my thyroid test results were normal and the nodule would NOT have been causing any symptoms at all. Even though he said my test results were normal they weren’t really, my T3 was at the very top of the normal range and my Reverse T3 was sky high. He told me that Reverese T3 is meaningless and in 30 years of practice he has never once ordered that test for a patient. (I had ordered it prior to going in to hospital via my regular GP). Anyway, so half my thyroid was removed and that is the only real reason I can come up with for my improvement.

 So, now …. I am still consulting with my regular GP but have decided to get another perspective and so have begun consulting via skype with Dr Jamie in Hawaii. She has a fresh set of ideas and has already put me on a trial of Oxygen therapy. I should clarify that, Jamie is not in a position to prescribe anything unless you are in the state and country where she is licensed to practice. Jamie is giving her suggestions to my GP here in Australia and if he has no objection then he will write me the prescription. I have been on oxygen for 2 weeks, with mixed results. Jamie has recommended half hour at a flow rate of 10 litres per min with a non rebreather mask. This type of mask has a bag attached and a one way valve so it prevents you breathing anything other than oxygen. This in theory is the closest thing you can get to using hyperbaric at home. I have so far not been able to tolerate oxygen at such a high flow rate and will be talking to Dr Jamie in a couple of days more about this. I find that it makes me very very spacey and I have difficulty breathing afterwards, even if I only use the oxygen for 5 minutes rather than half an hour.

 What has been successful for me is using it for 20 minutes at only 2 litres per minutes flow rate and with a nasal cannula. I find if I use it this way straight after an activity (such as a shower), then the Post Exertional Malaise I would normally get is lessened quite noticeably. Also if I use it before bed I sleep better and am generally a little brighter in the morning. But .. if I use it this way 2 days in a row then I tend to crash. Perhaps it’s a reaction to the plastic mask/cannula or something in the oxygen itself? I do hope I can work this out because the oxygen is the first thing I have tried in a long time that I can see gives me instant results. I know Dr Jamie has a few other tricks in her bag so I am hoping that this year will be a better one for me.

 I’d be keen to hear from anyone else about their experiences with oxygen.