Lyme/forum veterans? Abx resistance, major concerns, questions...

Girlie said...
“.....Why because I pointed out the truth that a lot of you women aren't willing to accept, many patients are lieing about remission...”

I think Blue is a dude (and I don’t think he looks like a lady)

Hahaha ok Girlie, sorry it's hard to tell going by usernames...

Girlie said...

I don’t know what you’ve been reading while on this forum - but I don’t see a common thread that people think remission is easy!!

What you forgot about the previous claims, when I mentioned how long it can take to reach remission, then two people chimed saying remission doesn't take the long, and that there's people being cured in the 1000s... Girlie, I'm not going to sit here and constantly go back and forth, I've seen a lot false hope presented over the 10 years of dealing with this disease and a lot of outrageous claims over the years. I saw this article in my Facebook feed, didn't understand how the young lady claims to be healed and in remisison when she's only 70-80% better. Decided to post it in this thread because I thought it was somewhat relative, case closed, I know many just think you should always have a positive mindset with everything related to lyme, congratulate the girl and all, sorry seen this too many times.

Mark FW said...
One, I cannot handle all, what I feel, is bad advice being passed around. Second.. the Lyme culture is a club in itself. I no longer hold to the beliefs talked about on this forum nor the Lyme Literate community The championed LLMD's talked about are in many cases telling us what we want to hear. Many I'm sure well meaning but are playing wack-a-mole with your body. Therefore out of respect for the forum, it's best I don't participate.

People are getting cured on ACC. 100's if not 1,000's of them. All the Moderators are healed or healing.

SeanIRL said...


If you're taking antibiotics for 8 or 9 years, you're doing it wrong. 18 months is more than enough to ascertain if treatment is working.

If you don't know my personality by now, I'm sort of a realist and search for the bold truth, I'm sure there's others out there that may appreciate some of the things I've pointed out.

Some just pat others on the back and just say awesome you've reached remission by treating mast cell activation syndrome, yet there's very little science to showing that this could be cause of the young girls chronic problems, considering the new science that surfaced about biofilms and persister cells. Majority of lyme patients still aren't addressing these factors due to the amount of misleading protocols out there.

Post Edited (Charlie55) : 12/31/2018 3:56:07 PM (GMT-7)

Girlie said...


PTLDS - is what the Drs call it when they treat you insufficiently and you still have symptoms.
They don’t recognize that your symptoms are active infection.

PTSD - is different. - A mental health condition that is caused by trauma.

I guess you could have ptsd from lyme.

Here's the thing, when the IDSA and CDC first acknowledged chronic lyme, a lot of it was said to be mental, and even psychosomatic. I suspect their position has changed with time and they have started to acknowledge chronic lyme patients body ailments to be real, before they used to say that aches and pains were no more than daily living. But I suspect many IDSA and CDC Doctors still think some symptoms of PTLDS to be in lyme patients head, especially with egotistical little pricks like Wormser.

I know they always acknowledged it to be just autoimmune, but I didn't know or must of forgot that they supposedly acknowledge some of the body pains lyme patients deal with this new label they made up. Again, I still find it to be very relative to what this girl said in her posts and even how Doctors like Kim Lewis treat chronic lyme patients with disrespect, saying someone I know with chronc lyme clearly does not have a serious neurlogical disorder. He obviously has predetermined conceptions about lyme patients, that's obvious to me know

Regardless what the CDC says about PTLDS, again I think some of these Doctors still think it to be mental issues, considering how Lewis treated her, I'll never forget that!

Dr Kim Lewis said...


You clearly do not have a serious neurological disorder.

IDSA said...
No More than the Aches and Pains of Daily Living

https://www.lymedisease.org/lymepolicywonk-the-idsa-says-chronic-lyme-disease-is-no-more-than-the-aches-and-pains-of-daily-living-is-this-true-2/

Post Edited (Charlie55) : 12/31/2018 4:56:43 PM (GMT-7)

Girlie said...
I think for me - it will be difficult at some point to determine remission.
At this point I am saying that I will be in remission when I’m symptom free.

But - what if some of my issue IS leftover damage - how will I determine if I need to continue treating?

My trouble area is where it all started - maybe it’s going to be the last to leave ?
It’s nerve related and nerves can take a long time to heal.

I’m definitely closer than I was six months ago... it’s a turtle pace now.

yeah that is what i believe the challenge is, when to stop. because treatment may not resolve all symptoms, depending what they are and what their root cause is.

nerve pain maybe from damage, or other causes, with other treatments all together.

so, for someone who is 70-80% that maybe remission for that person, since they are still working through nerve issues, or thyroid issues, or vitamin deficiency issues, that whole process could take years.

Oh I’m sure I’ll know a relapse when it happens - but I’d rather not have it get to that point - if that’s possible.


I know I will be on a minimal protocol for months before I’m “cut off “ of the abx.

In fact that is coming in a few months - hopefully my immune system will pick up the slack.
Abx 3 days per month
I just don’t know if I’m ready given the symptoms I currently have.

I don’t get fatigue - most likely I’ll get more pain if/when I relapse.