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» LymeNet Flash » Questions and Discussion » Medical Questions » Okay I give in

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Author Topic: Okay I give in
sutherngrl
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Well I know I have been resisting revisiting LD, actually avoiding it at all cost; but I have decided to make an appointment with my LLMD because something is just not right.

I can't go next week because kids are coming from VA to visit. So hopefully week after that I can get in to see him. I almost feel like I have let people down on here, because I was doing better and wanted to give others hope.

I am so frustrated right now. I have been moving on with my life, and we are just starting to build a new house and I need to feel good and enjoy this experience.

Just so others know, I don't feel as bad as I did before. I feel like I might be relapsing or maybe I have a co-infection; but its not nearly as severe as before. I hope that at least gives others a little hope.

I just hope my doctor believes I am relapsing. He says most people relapse within 3 months and I have been off antibiotics for 8 months. He will probably say I have been re-infected, but as long as he treats me.

Anyway, maybe this should be in general; but I thought more people would see it here and hoping for some comments to make me feel better.

Thanks!

SG

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
daphnesmom1
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I am sorry you are struggling. I have been there a few times and it's very discouraging especially after you have had a taste of freedom from the disease. We can never really let our guard down.

I hope you get treated and can start to get in front of it.

So sorry this is happening when you have family coming. I know all about that. Such a strain.

Hang in there.

--------------------
"Yeah, I miss me too."

Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012  |  IP: Logged | Report this post to a Moderator
sutherngrl
Frequent Contributor (1K+ posts)
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Thanks daphnesmom!

You are so right about getting that taste of freedom. You finally, after years of treatment, get that normalcy back, and its just so hard to face the lyme world again.

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Have you thought about a second opinion from another LLMD?

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94228 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sutherngrl
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Possibly. There is only one other LLMD within driving distance from where I live.
Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
surprise
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SG, I've been following your posts, feel like I can relate. I treated super aggressive with 2 different LLMD's,

had my last 2 months of feeling really well on antibx, so went off all treatment. Lifting weights, running my house and kids.

4 months later, stomach attacks, some anxiety back, realized I had to face the truth, I wasn't done.

The good news: I have held on to my gains- better neuro, the daily exercise is huge.

But I am doing herbal protocols, and seeing tremendous die off. I also realized my past life style left my adrenals shot, and working on those. Realizing this,

and a shift for me mentally and in a way spiritually about it, has been a good thing.

I think for me, after years and decades, there are layers.
At least we are working on them, thereby giving ourselves a better, happier, longer future.

All is not lost. Your future is still very bright :-)

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

Posts: 2518 | From USA | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
rowingmom
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I know that for people following Buhner's herbal protocols, he mentions that some may have to remain on low dosages indefinately. This is what we are planning to do, myself included, because our LLMD thinks our daughter was born with congenital lyme and contracted the bartonella later. I don't think it's feasible to think we can ever eradicate every last bacteria.

--------------------
13 yo DX PANS/Tourette's/Asperger's/ADHD treated for Igenex positive bartonella/IND lyme with 2 years of abx treatment. Weaned off abx April 2013 at 80% improvement. Continuing with Buhner bartonella/babesia protocols. Aug 2014 99% improvement.

Posts: 265 | From Canada, Ontario | Registered: Jul 2013  |  IP: Logged | Report this post to a Moderator
glm1111
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Have you tried treating parasites? It could be the missing link and has been for many incl myself. Check out the PARASITE WARRIORS SUPPORT THREAD

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
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Build your immune system. From what you did the first time to get better, you can do it. I followed your posts. God bless, stay healthy and kick its butt. I had two weeks of no depersonalization and life back. It passed and heads back in hell again. Keep goin.

--------------------
He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Distance shouldn't be a factor. A GOOD LLMD is essential to getting well.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94228 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sutherngrl
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We drive 3 hours one way to the LLMD I am seeing now. There is another well known LLMD that is also 3 hours away. So I do have that option without having to travel too far. But you are right getting well is what matters.
Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
CherylSue
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My current LLMD wants my CD57 up to 140 before he will get me off of abx. I feel a lot better, but that's not good enough.

He says that I may have to pulse abx once a month for the rest of my life just to keep it in check. He is also following my end stage treatment with Byron White Formulas.

I know now that I may never be treatment free, but as long as I can keep up a decent way of life without the disabling symptoms, I will be happy.

Congratulations at your 8 months of freedom from abx. That, no doubt, was good for your liver.

Good luck.

Posts: 1954 | From Illinois | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
   

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