I get posts on my Facebook feed from Lyme Disease.org. I see news on new tests that can make early detection easier. I know early diagnosis is the key to keep people from becoming very sick. I'm happy to see new technology that could make early detection and diagnosis commonplace.
But, sometimes when I see these developments, I think, what about those of us who did get sick, who didn't get an early diagnosis? Where are the breakthroughs that prove the bacteria can persist? Where are the tests that can tell whether we've beaten it or not? Where is our miracle drug that will get us all better? Where are the proven treatments?
What about us?
I know it's a horrible disease and I don't say this lightly, but sometimes I wish I had cancer instead of Lyme & Co.
Posted by TxCoord (Member # 9204) on :
I agree. Much time and effort is being spent on prevention and immediate care and those who have "chronic" issues are sent to the end of the line and labelled "difficult".
No easy answer to this.
Posted by poppy (Member # 5355) on :
We have been thrown under the bus, that's what.
Posted by seibertneurolyme (Member # 6416) on :
The Advanced Labs test is a start in the right direction to prove chronic lyme.
And there have been major improvements in the recognition and treatment and testing for bartonella and babesia in the last 10 years.
When hubby first got sick in 2001 the standard treatment for BLO (bartonella like organisms) was 1 month of levaquin.
The problem is that only LLMD's are aware of many of the tests and that many of the coinfections can also be chronic.
Clongen, Fry Lab and Galaxy Lab are all new within the last 5 or 6 years I think. Also SpiroStat and there are a few others.
The number of lyme disease books with actual treatment ideas has skyrocketed as well.
There are actually published herbal protocols that are based on scientific info rather than just guess work.
Change has been slow but it is happening.
I am hopeful that the new patient advocate organization that is being formed will help speed things along.
And legislation is being passed that can make a huge difference.