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 - https://www.facebook.com/morefordropkicks



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 - http://noisj.bandcamp.com/album/trapdoor

We also have a fun video for Trapdoor - http://www.youtube.com/watch?v=fmHUUi1DwNw
The video features and was produced by artist Mitsi. B. Mitsi also painted the cover art for us. Her website is here - http://www.mitsib.com

If you are on facebook the please like the Dropkick page - https://www.facebook.com/morefordropkicks

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

Sunday, September 1, 2013

Time for a slice of Lyme



 Just a quick post to say that after months of faffing around I am finally going to start treatment for Lyme Disease. My regular GP gave me Diflucan (antifungal) because of an ongoing systemic problem with yeast. I started that a few days ago and I am herxing quite badly on it. I spoke to my Lyme Dr this morning and he said that Diflucan is also a cyst buster, which means it kills the cyst form of Lyme and that could also explain the herx reaction. Once again he stated to me that he believes the only way forward for me is to get a PICC line and hit the Lyme hard. But, my parents are going away in October for a week or so and I am fed up with having to postpone treatment, so the Dr and I agreed that I should start now with a very small dose of oral Minocycline and just see what happens. If I can tolerate it I can stay on it until Mum and Dad return from their trip and then we can re-asses whether to put in the PICC or not. If I cannot tolerate the Minocycline I can just stop it and we will go for the PICC when Mum and Dad return. Aside from general herx which will be unavoidable regardless of if I do PICC or oral my main concern is how my gut handles the abx ... and this is why the Dr is suggesting the PICC, so that we bypass the gut. Makes sense so I imagine that we will have to go down that road at some point.

Anyway, patience is a virtue ... or some crap like that !!

Sunday, June 16, 2013

Three years in the making.

For the first time in three years I went OUT !!!  Not by ambulance to hospital or in a wooden box to the morgue hahaha, but in a car to a park with a friend. Since moving house in January my health has improved in small ways. When I crash it's less severe and it is happening less often. I am also able to move around my home a little easier and can stand up for longer etc. The last few weeks I have been feeling as though it might be time to test the waters and do a small outing. My chemical sensitivity and general smell sensitivity is much much worse now but I do have a pretty good carbon filter mask I can wear.

Today seemed like the perfect opportunity to try, beautiful and sunny but not hot and I woke up feeling as well as I ever can expect. My good friend Michael came and got me and I was so nervous. It felt a bit like when you are going overseas for the first time and you don't know what to expect. You have the butterfly's in  stomach and you check you locked all the doors 3 times before you leave. I got in the car and was expecting the car smell to be a problem but with my mask on it was actually ok. We drove a very short distance to a park just a couple of streets away. As we pulled over to the side of the road I could see there were some tables and chairs and swings etc. Michael parked the car and helped me out. Unfortunately the tables and chairs we to far for me to walk so instead I just sat on the grass by a big old tree. Wow! I did it .. I was outside! Amazing. It was lovely in the sun for 5 minutes or so but then I started to overheat so I moved a few feet into the shade ... still a lovely spot. We just sat and watched the birds for maybe 10 minutes by which time I started to feel tired. No desire to overdo it on my first try so it was time to return home. Michael helped me up. The walk back to the car was a little more difficult but manageable.




We drove home via a few surrounding street so I could get an idea of where I actually live. It's odd to have lived somewhere for 6 months and have no idea where you are situated and what surrounds you, so I have  a much clearer idea now.
Oh, the weirdest thing about the trip was that I wore a pair of shoes for the first time in 3 years. My feet felt really strange .... LOL

My hope now is that I don't crash tomorrow (which would not be unexpected) and next time I could go with my Mum and Dad and maybe take a picnic blanket and some lunch. What a treat that would be, for them as well as me. They have endured so much having to watch me suffer over the few years.

Things are looking up!!

Tuesday, May 28, 2013

Understanding Igenex Lyme test results


Since my last post I have been able to have a good look at my Igenex test results for Lyme Disease. A friend who also recently had a Lyme diagnosis was able to graciously explain it all to me in a way that my foggy brain could understand. Here is how she basically explained it to me.

The test is about probability rather than certainty. It looks at a number of ‘bands’ and how strong a response you have in each band. The LDAA (Lyme Disease Association of Australia) have this to say about the bands:

Currently there are 9 identified bands specific to Lyme Disease – 18, 23-25, 31, 34, 37, 39, 83 and 93.  
 A “+” or “IND” to one of these bands is considered a positive result.  A “+” or “IND” to two or more of these bands is considered a strong positive result.
Other bands on the Western Blot report such as 22, 28, 30, 41, 45, 58, 66, & 73, all add significant weight to the result, but at this stage are not necessarily considered  as absolute specific for Lyme bacteria. 
NOTE : It must be stressed that a Lyme Disease diagnosis is not based on a blood test result, but is rather based on medical history and current presenting symptoms – blood tests can assist in diagnosis, but should not be used to base a diagnosis on.  Also, almost all Lyme Disease patients have co-infections such as Ehrlichia, Rickettsia, Babesia, Bartonella, Mycoplasma Fermentans, Chlamydia Pneumonia, etc – these have their own testing and diagnostic problems, but should be considered in the diagnosis and treatment of a patient with Lyme Disease.
 For more information regarding the bands
 31 (also written as 31kDa) – is the outer surface protein A (ospA) – this is a classic Lyme Disease band, used in the Lyme Disease vaccine
 34 (also written as 34kDa) – this is the outer surface protein B (ospB) – this is also a hallmark Lyme Disease antibody, but is excluded from CDC criteria.
 23-25 (also written as 23-25 kDa) – these are the outer surface protein C.  Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections.

Here are the bands that are tested
  • 9 cross-reactive for Borrellia
  • 12 specific for Bb
  • 18 unknown
  • 20 cross-reactive for Borrellia
  • 21 unknown
  • 22 specific for Bb, probably really the 23/25 band
  • 23-25 outer surface protein C (OspC), specific for Bb
  • 28 unknown
  • 30 unknown; probably an outer surface protein; common in European and
  • one California strain
  • 31 outer surface protein A (OspA), specific for Bb
  • 34 outer surface protein B (OspB); specific for Bb
  • 35 specific for Bb
  • 37 specific for Bb
  • 38 cross-reactive for Bb
  • 39 is a major protein of Bb flagellin; specific for Bb
  • 41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia


My results for the IgM were IND or +ve (based on the info above it basically means all +ve) for 31, 39 and 41. And for IgG 30, 34, 41 and 66.  

which means the following apply:

31, 34, 39, 41 are all lyme specific, and it says a +ve or IND on ONE of these is considered a +ve result. 

The LDAA also say  ''If you have not received the Lyme Disease Vaccine and you test positive (“+”) or indeterminate (“IND”) to bands 31 and 34, you probably have Lyme Disease.'

and also “Patients that have a 31 or 34, or 23-25 band have a 97% response rate to the correct antibiotic treatment in conjunction with correct treatment for co-infections”.


So although officially my Lyme test was said to be negative it’s pretty likely that I do have Lyme. If I were to be re-tested after I start treatment then it’s more likely that I would be returned a positive result because as the Lyme dies it’s released into the blood stream where it can be found by the test.

I have more reading to do but I am leaning quite heavily towards my Doctors recommendation of going on IV antibiotics. 

* Photo is of a Lyme Spirochete, taken from the movie 'Under Our Skin'.

Sunday, May 12, 2013

"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!

Thursday, April 4, 2013

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!!

Wednesday, February 27, 2013

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.