Here's a question....so we need to be symptom free 3 mos. before stopping abx and symptom free another 3 mos. to be considered in remission.
What I want to know is, are there some symptoms that may never go away, even if we are in remission, due to damage done to the body by Lyme and co.? So how do we know if we are truly in remission?
Can we ever really be completely symptom free after having Lyme? I really hope so. Sometimes I think I'm getting closer to possibly being in remission but I still have many symptoms and wonder if it's really possible that they could all go away someday.
If we're not COMPLETELY symptom free does that mean we're not out of the woods?
Posted by Clarissa (Member # 4715) on :
Hi Laura,
I'm 4 mos off abx and "symptom free". I've had some flares (not HERXES). Flares are little waves of recurrences of symptoms as the body is settling.
I'd compare it to after shocks of an earthquake.
What my LLMD told me was to picture the Lyme and coinfections in little cages inside your body. That's when you're in remission.
You may eat too much sugar, go on a drinking binge or have a stressful situation, and the buggers may sneak out of the cage to play "while you're vulnerable".
However, if you attempt to keep everything in check with good diet, positive attitude, exercise, etc, then, hopefully, those cages will remain shut.
The unfortunate part is the cages do not have permanent locks on them so anyone is at risk for a relapse. The good news is, though, you now know what it feels like to have this illness so if you DID relapse then you could nip it in the bud asap.
The key is to knock down the numbers of buggers, put them in their cages and try your best not to give them a reason to open the cages ever again.
Many people (including myself) will stay on a maintentance program of some kind with herbs like Cumanda, Samento, Banderol, Mesosilver or Deseret Biologicals. Not mandatory...but good for prevention.
Hope that helps!!
Best,
Posted by tickbattler (Member # 14873) on :
Hi Clarissa,
Do you see Dr. R in NYC? Just curious if he is the one saying this. (My husband sees him.) Why can't we get rid of all of them if we can reduce them?
If this theory is right, then I shouldn't get treated? I have hardly any symptoms. Just a short pain about once a month in my head. I did have some bart symptoms about 4 years ago after delivering my twin boys (sore throat for a year and sore feet in the morning). But those are gone.
So my immune system is apparently keeping things in check. However, my thought is that I should get treated and try to nip it in the bud. I did get a positive Igenex test.
What do you think?
tickbattler
Posted by laura j (Member # 14257) on :
Clarissa,
Yes, that does help A LOT! Thank you. Thinking of remission as keeping Lyme and co. in cages is a great way to put it in perspective.
Tickbattler asked a great question though and I wonder if anyone has the answer....it seems her symptoms would kind of be in the same category as the flares you talked about.
So if we're never completely rid of Lyme but it's "in cages", if tickbattler's immune system is keeping it "in cages" on it's own should she treat if we're never completely rid of it anyway.
Posted by laura j (Member # 14257) on :
......also, tickbattler said sore throat is a symptom of bart. I tested negative for bart and babs (i know it doesn't mean anything) but I have a lot of sore throats. I also have EBV and Myco. Could my sore throats be due to Lyme or EBV or Myco or does it mean I have bart?
That question isn't directed to anyone in particular. Just wondering if anyone knows.
Posted by laura j (Member # 14257) on :
Tickbattler,
I just came across this new post...
Topic: positive IGeneX, feel fine: do I have Lyme?
Check it out. I think it answers your question. It also made me realize it was a silly question on my part w/all I've been through.
I had little symptoms for 2 years, then got increasingly worse for 3 more years until I COMPLETELY crashed with full blown neuro lyme.
I wish I had gotten treated early on only no one knew what was wrong w/me until just recently. You have the advantage that you know you have it early on. Trust me, you don't want to go through what I went through. I was positive I would die, and if they didn't figure out what I had when they did I know I would have died.
Posted by Clarissa (Member # 4715) on :
I don't want to make the decision for you because 50% would say nip it in the bud and 50% would say leave it alone.
For example, I came up as a low positive Babs Duncani on my Igenex. I have NO classic Babs symptoms AND I passed the muscle test for Babs.
My LLMD said he would not treat right now as the Babs is in its cage so why lure it out? It made me anxious but after my hellish Bart treatment I was slightly relieved.
I actually did post a thread about this decision and I can't find it anywhere. I recall that 75% of responses were "leave it alone" or "do a maintenance program with herbs to keep it in its cage"..."watch for signs, etc."
And my LLMD did say to be very aware of all symptoms and we will watch for it but since it can never totally be erradicated from the body, and if it's "behaving", leave it alone.
If you asked other prominent LLMD's the same question, they might say KILL it now.
However, my LLMD help put me (and my brother and sister-in-laws) Lyme in a cage permanently (so far) 6-years ago so I'm going to trust him.
Ideally, you could ask HIM in an appmt. Not sure if you have the $$ but I know he would ask your clinical symptoms and do the muscle testing and that's how he would determine if he would treat or not.
I hope that clarifies it a bit... not that anything is totally clear in the world of Lyme!
Best,
Posted by sutherngrl (Member # 16270) on :
I know 5 people that have all been symptom free for about 5 years now. So yes at least some people actually do completely recover.
Posted by Clarissa (Member # 4715) on :
Here's the thread from my post about to treat or not to treat my Babesia:
Know someone who's entering her 12th year sans-symptoms.
Posted by valymemom (Member # 7076) on :
I have been symptom free for 18 months after 14 months of abx - the last two I was symptom-free.
I did not have babs - only bart and Bb.
I have been diligent in taking some Cowden and or Buhner herbs, daily. Alternating. I alternate supplements, also.
My CD57 # which was 200 when I stopped abx is now below 60.....whatever that suggests.
As far as symptoms - none. Feeling very healthy in head and body.
Posted by laura j (Member # 14257) on :
I love to hear success stories! To those who are in remission, did any of you have brain lesions or abnormal spinal taps? How about Mycoplasma or EBV?
Maybe I shouldn't try too hard to figure out what's going to happen to me. Maybe I won't like the answer...
I have yet to test positive for Lyme, Babs or Bart. The only things I test positive for are high EBV and Myco. I also had POTS and have MVP and IC. Oh yeah, and there's the brain lesion and abnormal O bands on my spinal tap that could mean MS. My immune complement levels are very low as well. I did have 2 tick bites in 2002. My Lyme dx is clinical.
Posted by CherylSue (Member # 13077) on :
Clarissa, great analogy. I'll keep that in mind. It is very inspiring.