I've yet to improve again since going down hill. Due to this I find myself struggling emotionally. I had been doing so well and like so often before I feel I've almost been foolish to think that the improvment was there to stay. The mind has a funny way of forgetting how bad things were before. All of this has caused me to retreat into myself and I have been quite moody. I feel so tired that I don't feel able to cope with much more than getting through each daily task/the day. My moods have been causing arguments which makes things so much worse...
I don't feel up to writing a full post today. I just wanted to mention a good book I'm reading at the moment that I would suggest reading. It's called 'After the diagnosis' by JoAnn LeMaistre. She has MS.
The books chapters cover:
CRISIS
ISOLATION
ANGER
RECONSTRUCTION
INTERMITTENT DEPRESSION
RENEWAL
HELPING
That's all for now.
I hope you're all well...
Treya : )
There is a link to the book where I have written the title-in green.
ReplyDeleteMaybe I'll check it out - thanks for the Link....i did watch the Montoya talk you posted. It was so nice to hear a Dr. speak who takes this illness and the patients seriously and who is doing important research. Just as important, he is educating fellow drs. and researchers. I needed something hopeful like this.
ReplyDeleteYour early improvements show a response to treatment so don't loose heart it is a marathon not a quick race with Lyme. I was on antibiotics continuously for 3 years and then on and off the last year. I expect I will be back on again before I am done but at present holding my own and enjoying life.
ReplyDeleteGood luck
hi! i have read your inspiring story and am wondering how you got to have those blood tests that diagnosed you correctly with lyme disease? they sound hugely expensive. Iv ehad no luck with neurologist, rheumatologists-though they just checked my weight and asked questions no tests. neurology did muscle biopsy and electrical muscle test about ten yrs ago. I have major immune problems as in i dont seem to have a good one gland are always up, thyroid underactive too. Just cant help thinking its not plain cfs but no luck getting help on the nhs. any advice?
ReplyDeleteHi there Piffle,
ReplyDeleteSorry for not getting back until now. I've had a lot to do over the last week so I've been using up my energy elsewhere.
I sent my bloods over to IGENEX in California. I got a complete Lyme panel and co-infections. I think it cost around $900... Have a look on their site-http://igenex.com/Website/
They are one of the top labs for testing for tick borne diseases. The most important one to get done is the Western Blot test for Lyme. You should do research on this.
After I found out about the Lyme I went searching for someone to treat me. When I started with Dr. Jadin she tested me for Rickettsia. She does very specialized testing in South Africa.
I have a very supportive doctor over here. I asked him would he take the blood that I needed to send to the US. We had to order a test kit from IGENEX and then my doctor had to write to them I think... Can't remember exactly.
So I guess you would need to start by having a look at IGENEX site and research the testing. Then go to your doctor and ask if he/she will help you.
You can drop me an email if you need to discuss this further. Good Luck!
Hey Upnorth,
ReplyDeleteI'm glad you felt encouraged by the video. It does help, right? : )
Hi Joanne,
ReplyDeleteAs always, thanks for your encouraging words. I know it is a roller coaster... I guess I needed a little reminding to be mindful of the 'chronic' part of the illness.
Thanks for the well wishes.
Hi Piffle again,
ReplyDeleteI just saw that you don't have much money. I missed it the last time, so you may have felt a little daunted when you saw the cost...
There is another test you could get done in Germany I think?(cheaper) called the CD57. Basically if your CD57 count is very low it can be suggestive of chronic Lyme disease. It can be low with others diseases, but if your was low along with Lyme type symptoms it would be a good indicator. Check out this link
http://www.healthcentersofamerica.com/information.cfm?id=144
Also there is a group called Eurolyme. You can find anything you need to know about Lyme there. If you post a question people are very helpful.
Also check out this place in Germany
http://www.b-c-a.de/index.php?L=1
I don't know if you know, but the normal elisa test they do in the UK etc is very inaccurate. I actually tested negative three times with it, so I wouldn't rely on this if I were you.
Also check out this place
http://www.ilads.org/ Have a good look around this site.
These people take chronic Lyme seriously and their guidelines are the ones to follow. That care centre in Ausberg I gave you a link to above follows their guidelines. The only ones to do so in Europe I think?
Also I think there is a Dr. Wright in England that is quite sympathetic to Lyme.
I too have swollen glands that never go away...