OK let me restate this in a different way.. First I;'m not cured. Like many of your I still have a ways to go.. While I may have tapped down the fatigue effect. Head was chirping all night last night.
So let me re clarify and I'll respond to some of the feedback.
First the purpose of the Forum. A support group yes. And there are advantages to collaboration and empathy, we all need more of this . Myself, I have 2 goals, to get cured and help people. And my way of helping you is to ask you to question the new status quo.
So like many of you, I went to the mainstream medical route and they found nothing.. Then I found the alternate medical group, the LLMD's , who said yes you have Lyme.. Then there's the herbal group. So I though great!!! I can start to treat.. I get the science behind why blood testing testing is flawed. So a clinical diagnosis is made and the treatment starts..
However the success rate/track record is not good.. Most is based on ILADS. And people are going years treating the same way because they're told it's a complex infection. Treatment is all over the place. What works for some does not work for others.
Sorry , I'm not buying it.
When you look at the industry that has popped up around this condition, it's now big money.. People writing books, holding training seminars, promoting products. LOTS pf products.. Many of the sites I've been on are full of trolls. I;'ll admit I don;t see much of it here but I'm sure it's going on.
So while this may be viewed as criticism of the forum and the people of their intent, no,, not at all. However the Lyme or chronically ill person has possibly grabbed unto a flawed approach.. OK so the LLMD's try, they care,, at $300-500 dollars per hr they care. However, they are not curing anybody with any reasonable success.
So why do we hold on to them,, because they're the group that is telling us we're sick.. OK I'll admit it felt really good to get that acknowledgement. But for me 2 or 3 months that wears off. If you can't fix me, then you don't really know whats wrong with me. I know I'm sick.
So after my third LLMD, all with different abx approach and no success rate, time to look elsewhere. Even if it means questioning the condition of Lyme itself as we've been told.
Let's not stop asking the question what it that's making us sick.
Since most of us got our diagnosis from this group (LLMD's), we support and base our feedback and recommendations and in a indirect way,, support it.
Case is point, several weeks ago someone posts that they've been on abx for 2 years, no improvement and no herx. Many jumped in and told him that 2 years was not enough time. Please, think about
So I'm sorry if I offended people. That was not my intent..
I wanted to point out there's a protocol out there that does have a high success rate. However It requires you to question what you've come to know as the Lyme condition and the new status quo.
Post Edited (Mark FW) : 11/11/2018 8:39:09 AM (GMT-7)