Diagnosis and a way forward, at last!

Hi all

Well, it's been a VERY long time between posts! I must admit I'd kind of forgotten about the blog, until I received a message today from someone on an IBS forum asking for an update.

Let's make a long story short:

the transplants didn't result in any long term improvements

I was eventually diagnosed with Lyme Disease in July this year

Lyme Disease is an infection that is usually transmitted by a tick, and can impact any part of your body. Because I've always had a fairly weak stomach, even as a child, it looks like Lyme has zero-ed in on my gut.

I have, of course, had symptoms not related to the gut, but many of these have been in my brain (brain fog, mood swings, lack of co-ordination), and it is well known that the gut and brain have a very strong connection; so much so that the gut is often called "the second brain".

For this reason, I continued to see the overall problem as purely a gastro-intestinal one, and didn't investigate the possibility of a systemic disease. In fact, the only reason I started looking into Lyme Disease at all, is that my sister's step-daughter (who lives in an area with lots of ticks) was diagnosed with it, and had quite similar symptoms to my own.

I was feeling pretty sceptical about it, as the Australian government claim that we are the only continent on Earth(other than Antartica)that doesn't have locally acquired Lyme Disease, and also our media characterise Lyme by people having seizures, which I don't have and have never had. But when I saw the list of possible symptoms, I had to admit I had at least 50% of them.

A 'Lyme literate' doctor sent my blood off to IgeneX, an American pathology which specialises in tick-bourne infections, and whattayaknow, it came back positive not only for Lyme, but also a co-infection called Bartonella.

Treatment is tough; it involves huge amounts of antibiotics, so I've actually taken 6 months off work. I'm about 6 weeks into my leave, and alas, it's been very stop/start - one of the problems with Lyme sufferers with primary symptoms in the gastro-intestinal area ('GI Lymies') is that it's hard to know how much of the antibiotics and supporting supplements are being absorbed, and how much are just going straight through your system, or worse, leaking out of your gut.

Interestingly, though, one of the antibiotics I'd been given in the lead up to the first transplants was Vancomycin, which actually has some limited success in treating Lyme Disease - that could partially explain the short term improvements I felt, and I'm sure having some fresh, happy bacteria !

So, a decade after first becoming ill, I have a diagnosis that makes sense to me, and a way forward. Although Lyme can't be 'cured', I think getting it under control is as close as I can get to a 'happy ending', and that's OK with me. I encourage anyone reading this blog to PLEASE investigate Lyme Disease as a possible reason for your illness, and wish you all the best in getting back to good health

Day 171

Back again!

Well, I ended up having just three consecutive treatments in November; one of the donors was going on holidays, and the prospective replacement donor didn't pass the strict screening process, so I wasn't able to continue on.

There's been no improvement in my food intolerances at all, since the initial improvement (ie when I started eating fairly 'normal' bread). However, I've had a few compliments on how much healthier I look; the most memorable one was from a colleague I hadn't seen for about 6 months, who didn't even know I was getting treatment. After seeing me in a meeting, she pulled me aside to say that this was the first time that she'd seen any colour in my face in the 2 yrs we'd known each other, and that she just had to ask what had caused it.

And even though I seem to be the only one to notice it, my eyes are definitely less puffy; I still get a bit of a surprise every morning by how big they are.

So..there's not much improvement overall, but still more improvement than I've ever had before, so I'll stick with it, and try and get some more appointments when the clinic re-opens. My theory is that I've been so sick for so long, and the bad bacteria are so well established, that its going to take more than a few sessions to get it sorted.

Let's hope it's a Healthy New Year!

Day 112

Long time, no blog!

Early September to early October was absolutely horrible, and although I've been feeling better since then, I can't say that my health has 'stabilised' as expected.

Nevertheless, I had to go back and see Prof Borody 2 weeks ago, so Ryan and I had a chat to see if we'd noticed any improvement. We agreed that I am now more tolerant of the new high fibre bread I'd started taking - I'm now eating 50% of that bread, and 50% of the old rice bread without negative reaction (or positive improvement for that matter). Additionally, my mood swings had dropped by about 80%.

I also think that my eyes are less puffy (not that I'd ever noticed them being puffy, but lately they seem bigger than normal, so they must have been), but Ryan didn't know what I was talking about.

Anyways, I took that news to Prof Borody, who felt the treatment had failed. I wouldn't go that far - certainly, being able to reach the daily recommended fibre intake for an adult is a big improvement, in my opinion.

Prof Borody suggested I might like to have a transplant once a week, for 6 consecutive weeks, in case my now consistent fibre intake could help gain further results. He said if any improvement occurred, I'd notice it by the end of week 5.

I was ready to give it another go, so I contacted S to book in, only to be told that she could only offer me 3 consecutive weeks starting last week, with the possibility of further weeks if the hospital could squeeze me in.

I explained that in that case, I had no problems waiting until the new year to have the six consecutive weeks, as Prof Borody had advised me that week 5 would likely be the one to give me improvement.

At this point, S became terse, telling me that I couldn't have it next year; the hospital would be closed over the holiday period, and also the donors would be having a break, too.

Again, I said that was fine, I'll wait until Feb.

She told me they'd probably be closed in Feb, too, and that there was no 'magic number' of weeks for treatment.

At this stage I gave up - fine, I'll risk wasting $1050 for three weeks treatment without any guarantee of a further three weeks, whatever.

So that's what I'm doing - I had the first treatment last week, and no improvement to date. In fact I'm a bit tired and pissed off, but that might just be circumstantial.

Signing off for now, wish me luck (again!)

Day 76

Hello again!

Not long after my last post, I started feeling better again - not better than before the transplants, but better than I had been feeling, which was freaking horrible.

Still no improvement...and only 3 weeks before I go back for review. :(

Day 62

Sick, very sick...and have been for the last week in particular. As you can imagine, there's been alot more teariness, and in fact, for the last two days I've been vomitting; something that I haven't done for over a year.

I had yesterday off work, and had to cancel my birthday dinner with friends tonight.

Still no mood swings, but I'm really starting to prepare myself for the bald truth that this treatment simply hasn't given any other kind of relief...and won't. Its nearly 2 months since my first treatment - S had told me that they used to use 2 months as the guideline for any improvements to stabilise. Now they've changed it to 3 months, but still...it's not even stabilisation I'm looking for, just any kind of positive sign.

But, to make sure I give it my best shot, I've still got to keep up with the high fibre diet for the next 5 weeks or so, until my follow up appointment. As you can imagine, I've reduced my fibre intake a fair bit, and attempted to find out what else could be irritating my gut (changing time of day I swallow vitamin tablets to see if that makes any difference, going on a 'cleansing diet' of just rice bread and water for a few days etc), but no light at the end of the tunnel at present.

Hate hate hate

Day 51

Hate hate hate..

Day 39 was even worse than Day 38, and I've been hovering in a haze of unwellness ever since. I only took Days 38 and 39 off work though. I have goodish days, but mainly lots of bad days.

The worst thing is the mental cloudiness - until today, I've managed to keep it all together by applying double the effort to reach a normal standard of intelligence (unfortunately, brain power is needed for my job as a Business Analyst).

Today, though, the wheels fell off the cart. I had to conduct an impact assessment analysis, and for some reason, when doing my calculations, I read 1.7 million to be 17 million. Which obviously stuffed up my results. Which I proceeded to innocently distribute to my contacts, impressing them all with my stupidity.

When the Project Manager pointed out my error (cringe!) I tried to recalculate, only to realise that my brain didn't seem to know how to write 1 700 000. At which point I had to phone a friend to ask how to write it. QUADRUPLE CRINGE!! (Sandi, I hope you aren't reading this, o victim of my dodgy impact assessment!)

Anyways, I'm sick of this shit. Surely 8.5yrs of mental humiliation is enough for anyone, particularly on this side of 80?

I can only hope that this is the mental cloudiness' "last hurrah". I'm still not getting the mood swings, so hopefully we are progressing..kind of...some how?

Hate hate hate!

Day 38

Wow, that’s the last time I ask you to keep your fingers crossed from me!

Within 24 hours of my last post, I was really quite sick again – massive nausea (but weirdly, no vomiting), exhaustion, mental fogginess and bloating.

I’ve been falling into deep sleeps on the commute to and from work, and then again as soon as I arrive home in the evening. My stomach feels like its permanently churning acid, and my brain has gone AWOL. You know that ‘brain blank’ feeling you get when you are just randomly staring at something? That’s me, 24/7.

I’ve kept on truckin’ regardless – I’ve had 8.5 yrs of gritting my teeth through this kinda thing, so there was no reason to fly the white flag of surrender. Until, that is, I started getting teary. I don’t know why this happens, its like my body is so used to physical challenges that my brain doesn’t listen to it anymore – so when things get too much, my body ‘dobs’ to my emotions, who get themselves involved to force my brain to realise that I’ve had enough. Phew – did that make sense?!

Anyways, I’m not sure how I feel about this bout of sickness. I don’t know the cause; is it ‘Round 2’ of the Good vs Evil bacteria, or is it just my body rebelling against the build up of high fibre foods? The symptoms are almost identical.

I’m leaning towards the Good vs Evil theory, because I don’t have mood swings, and also, the 1.5 hr naps in the evening are very unlike me, regardless of exhaustion.

Because of this, I decided yesterday that I should be out there proactively supporting the Good bacteria – go team!! To increase my fibre intake, I bought some rye bread with multigrain (each slice has 20% of an adult’s daily fibre intake), and Weight Watchers baked beans (that brand had the least amount of sauce).

I felt slightly better after eating these last night, but that may be psychological, as I’d already decided not to go to work today, so I didn’t have the additional stress of trying to ‘push’ myself to get on with daily life.

I had some more baked beans and rye bread this morning, and am still feeling slightly better, but who wouldn’t after 3.5 hrs worth of naps and 12 hour overnight sleep in the last 24 hours?!

In any case, I think that’s enough baked beans and rye bread for at least a week – I’ve gotta try and balance helping the Good guys, with minimising any irritation to my gut through dietary changes.

Some friends have commented that I must be really frustrated by the lack of ‘knowing’ what’s going on. It is frustrating, but probably not as much as they’d expect. After all, I’ve been ‘not knowing’ for years, and at least now there’s a chance of light at the end of the tunnel, which is more than I can say for the first 7.5 years of this shitfight (no pun intended).

Had to go to the doctor’s today to get a sick certificate – it was quite funny actually. My normal doctor has left the practice, so I saw a new guy. I bought along my ‘HPI Patient Protocol’ booklet, so he’d know I wasn’t making things up (hmmm…there are those trust issues again!).

He well and truly believed me though – you should have seen his eyes fly open in shock when I explained I had undergone poo transplants! Then he tried to play it cool, though – pity he ruined it all by asking to keep Prof Borody’s business card!

Anyways, just writing this has drained me, so I’m off to stare off into space for a while. Good night!