Hi dkel9307
Helps a lot, thanks! Good points on the environmental aspect.
My EM is currently more mild but have noticed it picking up over the last fortnight. Has now moved to ears and face at times. Also felt it going up my arms to my elbow and the patches under my knees. Bit of a battle of the mind too at the moment as it hits. Sometimes trying to focus off it helps a bit.
Got your other message too - which sounds good, will message you shortly.
Craig
Hi dkel9307
How are you getting on? I also seem to respond to Aspirin, wondering if you have had anything show up as yet?
I was told by a Haemotologist that taking bloods every 6-12 months is fine as he said if there is something it will show up very slowly...
dkel9307 said:
Thanks Domina - I am checking my bloods each two months, as I respond to aspirin
Domina said:Thanks Laura - I guess I better find a doctor real quick and get checked out - maybe I have a horrible disease - other than EM. On the other hand - maybe I just don't want to know.
Hi dkel9307
Wow sorry to hear about the Lyme diagnosis.
Did you have your bloods tested at igenex?
I was bitten by ticks in Germany across a period of a few years. I had my bloods tested at a local hospital but came up negative. However I’ve heard a lyme diagnosis can be vey tricky. Have ordered a testing kit from igenex on the thought that maybe the most comprehensive tests may bring out something? I’m not too sure.
In any case trying to get a LLMD (lyme doc) is quite hard in Australia?
Where do you think you contracted Lyme? In Europe?
Do you have a Lyme doc overseas or someone in Australia?
I assume I don’t have Lyme… I had my blood Fedex to Germany where a doctor in the family arranged to get it tested.
It came back ‘normal’ i.e.: no Bartonella… but it does make me wonder if Igenex would pick up something different? Seems to be variable - not a straight forward yes or no?
The only symptom I guess I could point to having Lyme is EM and Livedo… but thats it. Nothing else really going on…
Hi, are you a member of our Lyme community too..? Can't remember if I asked before or not.! I blame the brain fog lol
Let me know if you keep having problems as I’m a mod there to and should be able to get info to help you.
EM can indeed be an indicator of an underlying myeloproliferative disease and can manifest a couple of years before symptoms of the MPD. I have a relative by marriage who had both, in his case polycythaemia Vera and EM.
After having EM for two years I took aspirin as a preventative against a DVT and discovered it made a big difference to my EM. I still flare but the intense swelling has gone and I have fewer flares than before. I asked to see a haematologist to check me out for an MPD as I too had often seen it stated that aspirin is used as a diagnostic tool. THe testing was very thorough, right through to a bone marrow biopsy and the result was negative all the way. I have since encountered lots of people who are helped by aspirin but like me have no MPD. The facts are that Aspirin helps a number of people with their EM and Aspirin helps people with EM who just might go on to find they have a platelet disorder.
I hope this helps a little
Nel
Thanks Nel
Nel said:
EM can indeed be an indicator of an underlying myeloproliferative disease and can manifest a couple of years before symptoms of the MPD. I have a relative by marriage who had both, in his case polycythaemia Vera and EM.
After having EM for two years I took aspirin as a preventative against a DVT and discovered it made a big difference to my EM. I still flare but the intense swelling has gone and I have fewer flares than before. I asked to see a haematologist to check me out for an MPD as I too had often seen it stated that aspirin is used as a diagnostic tool. THe testing was very thorough, right through to a bone marrow biopsy and the result was negative all the way. I have since encountered lots of people who are helped by aspirin but like me have no MPD. The facts are that Aspirin helps a number of people with their EM and Aspirin helps people with EM who just might go on to find they have a platelet disorder.
I hope this helps a little
Nel
Ocker, Igenex tests are considered unreliable. There is a more promising test in development, which is encouraging, but Igenex testing has set many a patient on the wrong treatment path. See, for example, http://www.bostonglobe.com/lifestyle/health-wellness/2013/10/20/man...
Please join our lyme community if you need more guidance.