Friday, 12 October 2012

Interview with Ledderhose patient who found Malaria treatment to help

Today I have an interesting experience from a patient that is currently in the USA but travelled there from Scotland, I am going to start with a little bit of her story and then go into the interview.

So here is her Story: 

I have been aware of my "marble" (composed of 3 nodules) for about 4 years, I think trauma was the cause for me... as at least twice I can remember that my arch landed badly on a sharp stone and I saw stars.... Now I find that the lump not only causes intermittent  pain on the sole of my left foot but also indirectly causes chronic compensatory 'collateral' impact on other muscles and joints- both referred and indirect pain and unhappy habituated muscle contractions in gluts, psoas, I T bands etc.  Unfortunately, only we sufferers understand the ramifications and disruption that  this aberrant growth unleashes on the quality of our lives.  In fact my experience has been (even when I point out the blighter) that professionals are generally dismissive or uninformed about the Ledderhose condition and for instance don't even consider its possible  impact on my gait, etc.

Anyway, there was a glimmer of hope which I am going to pass on to you and with your scientific background and expertise you might be able to extract something from it! A couple of years ago we were in south east Asia and I took Malarone for a month by which time I noticed that the lumps had virtually disappeared. My family actually spotted it before I noticed it so it was clearly a significant improvement. 

I suspected that this nasty and powerful drug had a collagenase ingredient which had dissolved it and I did pass on my experience  to the manufacturer but never heard any more about it.  (As you pointed out there is not much of a market for this kind of research !!! ) 

And here is the interview: 

1) Do you have Ledderhose disease, Dupuytren's disease or both?

* I have one lump area on my foot which is apparently comprised of 3 lesions measuring up to 1.1 cm in diameter              (xray)
* I have Dupuytrens in both hands about which I have been aware for about 10 years; I have not been limited or inconvenienced - I can still  flex my hands backwards like the Maylasian dancers but not quite so far back!


2) Do you have a family history of the condition, if yes then please explain, also do you think you are at risk from any other factors such as smoking, drinking or diabetes?

* In retrospect I think that my father had Duputrens because he frequently rubbed his hands but it never stopped him from playing the piano.   Sorry to be iffy but that is where I think the genetic predispsition originated!  His family came from Russia so classic genetic pool for this.

* No, I don't have the other risk factors .  


3) How long have you had Ledderhose disease and how long has it been a problem? 

*  This is tricky because the NHS had taught me to ignore things as they usually resolve!!! I think that my suggestion of 4 years is pretty accurate; it does change size possibly related to stress like doing Zumba classes.  I do wear insoles with a cut out but still the area sometimes gets upset! 

*  It started when I was 59 and became undeniably a problem a year later. The impact on my gait and muscular and joint adjustments are real problems for me (I don't drive!) causing habituated muscle contractions and ensuing mal-functioning;  I have a lot of chronic pain from  muscles tugging  my knee cap and tilting my pelvis which causes chronic back pain which also restrict walking and interrupt sleep.


4) What treatments have you had? 

Hah!   The podiatrist suggested massging it!  

* I go to a structural integrationist to try to unlock the habituated muscles.  I have recently attended a chiropractor to work with the joints (not the traditional crunching adjustments, a different technique).  These give relief to my body for about 30 hours and indirectly affect the lump - I can walk more normally.

*I eat a huge amount of garlic and onions which may be why it hasn't grown.....and apart from that it has only been the Malarone which has helped.  I was sorry that there was no control because it was a knock-out result - amazing to be able to remember for about 6 weeks what Life  felt like before the lump!  

*I do not plan to have the surgery but I am waiting for them to perfect a laser or ultra sound  or similar type  treatment like they use for breaking up kidney stones which won't affect the surrounding tissue and nerves.


5) Were any of the treatments successful? 

I am happy to repeat that something in the Malarone really shrunk it.  The only other fact that I shall report was on the 28th day of taking the anti-malarial pill I developed whole bodied Urticaria (it is a known reaction to Malarone) for the first and only time in my life - not fun but I mention it because I guess my histamines were totally wild at that time  in case you think that might have been contributing to the reduction of the lump.  Such a small sample size but so dramatic!


6) What are you planning on doing now? 

I am shopping for different insoles that don't compress to ensure that the depth of the cut-out space is maintained.


7) Do you do anything / have you found anything to help alleviate the condition? 

I really enjoy my Zumba classes - good for well being, endorphins, blood pressure which help me cope with the side effects of my marble - so it is a fine balance between these advantages and not pushing my Ledderhose lump so much that it swells and becomes more painful.
P.S.  I think the NHS is fantastic....my initial experience of the american system is "let's test" because there are incentives for increased fees and covering their backs for litigation.  I was really pleased to see the homage to the NHS at the Olympics but of course America doesn't get it! 

It is a very interesting read and could turn out to be very interesting if her results are confirmed by other patients that happen to take this drug whilst suffering from these conditions.

My initial research indicates that there is no collagenase component  to this drug and it in fact is geared to target the parasites specifically and should not interact with human tissue. I will keep looking as the results achieved by this person are very interesting and if replicated would certainly warrant further investigation.