Need your help - re: backsliding?

Girlie are you sure the red rash you were getting isn't a Bartonella herx rash?

I was getting those red rashes but they go away with treatments more focused on Bartonella. Now on my triple antibiotic combination for bart it is gone and I get no red rashes.

I am really tempted to just try the Biaxin for a week and see what happens.

I know I should listen to my Dr., but really, it's an educated guess, he really doesn't know for sure. And, he's not living it.... I'm doing my best to pass the info on, but I believe some of it gets 'lost in translation' and also in his notes...

It wouldn't hurt to try it for a week...

I just am feeling more sore all day long...I used to have several hours of the day where I wasn't hurting - but I am feeling my pain all day...

Who knows - maybe it's a herx. I'll go strap on my herx-meter and see what it registers...lol.

I agree with Bluebyyou. I think it has something to do with cysts. When I first took GSE, I noticed no difference when taking it.

More recently, I have noticed rashes and herxes from it. It was stirring up Babesia and possibly other rashes and symptoms.

I think that at first, I may not have had many cysts (at least not as many as later). I think now I have more cysts from being in doxy for a while. Your tini may be busting more cysts.

Either way, talk to your doctor about your concerns. It is important that you feel like your concerns and questions are adequately addressed. Hang in there Girlie.

Girlie:

I have had nerve damage from a car accident and from Lyme and Barto.  As you know, I was treated for 1 year (actually a little longer because I got 1 mo abx when I first tested + by CDC for Lyme).  The nerve damage still lingered for a while but was much milder and I stopped abx.

For about 3 years I had not symptoms nerve wise, but once in a blue moon I would get sole pain.  I took nothing for it--I just ignored it.

THen a few months after my son got sick, I had some bad pains and started propolis and it resolved 98-100%.  So I would say that was a flare up, I do not think I am relapsing because on most day I am 98% and I have days when I am 100% symptom free.

That being said, my situation is different and while I can deal with more stress than most people I know, I do not sleep much at all because I am keeping an eye (or a ear) for my son in case the seizures come back. 

If I were you, I would back up from treatment a little and detox more to see how it goes.  I have no detoxing issues, my body is doing very well with that and maybe that is why my symptoms are almost innexistant.  I started to drink horsetail tea and take vit C, which I make in liposomal form and I think it does help detox a lot.  Besides that I do nothing and I drink lots of coffee--I know, I shouldn't, but I need to stay up during the day to watch my kids.

My nerve damage was confirmed by a neuro that did a test--I forgot what it is called--with needles and the machine was swinging off the chart!  So healing is possible but it takes time.  It was my personal oppinion to stop abx and I never regretted it.  Abx have alluminum and mercury in them and unless one detoxes well, they will create all sorts of new problems.

So even in the place on my leg that a metal bumper hit me, the nerve pain is gone--maybe it comes for a few seconds 3-4 times per year.

It is my oppinion, and maybe I am wrong, that more treatment may not be better, especially if it has those unwanted ingredients in it.  I think herbal would be ok to continue and if my symptoms worsen, I will be ready for that--I have everything I need.

I hope this helps :)

Girlie- Backsliding is sadly not uncommon for me. If I have a good week or a good couple of weeks, I don't even bother thinking I've turned the corner because I know the backslide will be coming. I've talked to my LLMD a couple of appointments ago and she said backsliding was normal for Lyme. Though now, she's testing to see if I'm suffering from mold exposure. I know there is definitely mold in the house, the question is how much is it effecting me and my family for that matter.

I also seem to be having issues with my upper back, shoulder and neck area. My shoulder blades hurt too. They seem to alternate, one week it'll be the left side, the next week it'll be the right. I see an upper cervical chiropractor, which you recommended, and he helps but for some reason it doesn't want to take for more than a few days. I understand it's a process to heal but I don't know what I'm doing that aggravates it each time. I don't know how much of the Lyme is to blame for it. A major issue I have is that when my back and neck tighten up, it tends to give me tension headaches. If it's not one thing it's another.

Hi friend,

We sound so much alike again. My shoulder pain had gone completely away for about 6 months. Sadly, It's back again! It started up about 2 weeks ago. I honestly had forgotten how bad it hurt before.

I'm sure you are doing your detoxing routine, but are you taking any tinctures to remove toxins? I'm on the cowden protocol which has diff detox tinctures, but the ones that work the best are Pinella and Burbur. It's also the tinctures they recommend for getting through a herx.

They really, really work too. For a herx, it's 10 drops of each in 1/4 cup of water. Every 10 minutes until the herx is over.

The tinctures have worked so well for me that I bought some through Amazon (cheaper) and have my children on them. It seems to work for them too.

I'm just thinking it would help with your muscles. Don't worry too much. I felt I was at point A again a few weeks ago and now I'm feeling better again. For me, It was just a matter of moving out the toxins. I hope you feel better soon!

Yeah, I'm back ;) I love this site and have recommended it to my local Lyme group. I find a bit of comfort knowing I am amongst people who can relate to me. I have been "lurking" but I decided I need to comment more...

I'm glad you have them already. They are supposed to work together. Synergistically.

I'm so over this cold weather! We've had a few beautiful days in VA and I've felt well. I'm looking forward to the warmer weather ahead. Bring it! I think this might be the year we really improve since we both found out last year and didn't have enough time to improve yet.

We're getting there. Slowly, but surely.