another update

16 days off antibiotics. I HAD been feeling pretty good up until yesterday/today. I had some ear issues that have not been present for the last few days. My anxiety seemed to be under control.
Then yesterday I started having some anxiety to the point where I took 1/4 of a valium and it took care of it.
But this morning I had a real anxiety attack. A scary one. Felt like anxiety was coursing through me
I didn't want to take another valium- I really worry about getting habitual with it- but I ended up feeling so bad I took 1/2 a valium. Now about 2 hours later form the anxiety attack and taking the valium I feel sleepy and sedated. Still a slight bit anxious.

The thing is, most of yesterday I felt really good all day until the afternoon when I had some minor anxiety.

The few days before that I also felt good. I am keeping a symptoms journal about every other day.
My ears and eyes were feeling better ( still feel okay now). I don't feel flu-ey or sick. Just the anxiety-- but anxiety was my worst lyme symptom.

My next llmd appointment is in 12 days.
ALso I am going on a trip to visit family next week and they has been so hoping to finally see me well and celebrate my recovery.

Also, I had gluten again yesterday- a grilled cheese sandwhich- so delicious. When I start to feel good again I allow myself to test out a little gluten.

But the thing is, I either still have the lyme or I don't. I don't know what is what right now.
I am absolutely feeling pessimistic and worried today.
But yesterday ( until the late afternoon) I was feeling notably good- like- oh wow I really feel my health returning.
So I don't want to totally jump to conclusions. ugh. Again all I can do is wait and see.
Like I said, I am still taking the herbals from my llmd twice a day and also samento and banderol.
I had been feeling like I was one of the lucky ones who did the right treatment and got past the awfulness of lyme.
I am still unsure. The anxiety may be the lyme acting up or it may just be something else- the reality is that lots of things cause anxiety. I just have to keep watching and seeing. I can do a phone consult with my llmd before my appointment but if I do that I Want to give it a few more days first to see if this anxiety is recurring or just an odd once in a while thing. I want to really know before I just assume it is the worst and jump back into antibiotics. I don't even know if I went back on if I would have to add suprex or stronger doses or how long for. I don't even want to go there.

The good news is I had a bunch of good days in a row. The bad news is I had an anxiety attack today which has now been subdues by a 1/2 a valium. I don't know what is what.

Anxiety/panic was my first and worst symptom. I had it under control with doxepin until I started doxy a few weeks ago. The doxy was like pouring gasoline on a fire!

So, your horrible anxiety had been gone for awhile since being on abx, and then just returned yesterday after being off the abx for a couple weeks? Could you possibly have an adrenal or thyroid problem? I do know Lyme can cause that. And both of those things can cause anxiety, as can low progesterone.

But, since anxiety was your first symptom, I can see why you are scared. I would be worried that it's the Lyme as well! Or Bart.

Since you are otherwise feeling healthy, I would stick to the GF, sugar free, dairy free diet until your LLMD appt. I would also drink tons of water, and get some exercise. See if those basic things help. Then, reevaluate in 2 weeks at your LLMD appt.

Could the banderol/samento be causing a herx? Just a thought.

I was laying on the sofa all day, drugged out on Xanax, due to horrible morning panic! It's no fun. I'm flushing the darn doxy down the toilet!

Maybe try some yoga and deep breathing exercises. And don't forget a relaxing bath!

Yes! That's a great attitude to have! You WILL feel better tomorrow!

Maybe at some point you might consider some of Buhner's herbs. I think many on this forum have had success with using them during the transition off abx.

But right now you are doing everything right! Try your hardest not to stress about it. Easier said than done, I know!

Glad you are feeling better! That is great news!

Good point, Cd! KB, I know our LLMD is very thyroid savvy. Bring it up with him at your next appt. at least get the FT3 and FT4 checked. Those levels should be in the upper half of their ranges.

meh. another bad day. Feel exhausted today and my head doesn't feel right. Starting to think I may not be better after all. So totally devastated if this is so as I spent thousands of dollars and months of treatment so far and was hoping to be well.
It is still confusing enough that I am not sure-- as was my lyme all alog until I started treatment-- exhaustion. Had one anxiety thing today. tinntus/
Will probably put a call into my dr tomorrow. Meh. I am bummed.

Was feeling good yesterday so hopeful but today I just feel crappy again. Lyme sucks so bad.
I want to be well.

I may have to go back on abx for a longer time. And then what- I wonder if at some point this will all subside.

then again. maybe I amjust tired and looking for signs. After lyme I just feel so weak and yucky. Hoping to have a better update tomorrow. I am wary of calling my dr too soon and getting back on the abx because of a few bad days. Still hoping I am better than I feel today. But today was not good I just want to sleep all day.

99% relapse rate even for patients he treats??? does he say the herbs keep the relapse from happening?

KB

You DO KNOW that abx work for you! You have made significant gains. You just might not be ready to come off abx yet.

AND....based on dr. H, I would have a very comprehensive herbal plan in place when you do come off.

Maybe go back on abx a few months.
Then pulse abx a few months
Then work in herbals.

Don't throw in the towel yet. Many people backslide, but then get better when they restart treatment.

I know, you just want to be done! But, this is not an easy disease to tackle.

Hon

All you can do now is keep yourself as healthy and stress free as possible. Take your supplements and herbs religiously! Detox!

Keep a journal everyday of these symptoms that are popping up! I know you don't want to get back on abx if this is not Lyme. It might put your mind at ease to call the LLMD and discuss these concerns. They deal with these issues all the time! EVERY Lyme patient must go through this!!

I really hope that darn bug is gone for you! I just worry that if you stress, you will make it worse. Let's see how you feel tomorrow. Then, maybe call your LLMD with your symptoms from the last few days. At least by then you have given it some time. But if you repeatedly feel bad, it"s time to call Dr. S.

I think dealing with Lyme puts crippling fear in people. Heck, I started treatment early and I know what I've been going through. I can't imagine what it must be like for people who suffered for years without treatment....and suffered through the treatment. All of this can put doubts in one's mind when the treatment is seemingly over.

Day by day (and sometimes minute by minute) is really the best way to get through things. We need to rejoice the good stuff....and be cautious with the concerning stuff.

I've been maintaining a symptoms journal since 2007 when I was diagnosed with Graves' that moved into hypothyroidism after remission. Now that I'm dealing with Lyme, I "consolidate" those journal entries into a Lyme symptom spreadsheet.

I figure my doctors can sort through it all lol

Somehow I think that, should you need to go back on antibiotics, it won't be anywhere near as bad as it was. I have no doubts that your treatment wiped out a LOT of Bb's....maybe you just need to "dust in the corners".

Still....back to day-by-day.....and keeping detailed notes - THAT you can control.

Hang in and hope you stay feeling like you did last night!!

I just remembered something from my reading (can't remember where, though).

I *believe* symptoms after going off antibiotics are considered detox. It's symptoms that recur in accordance with the Lyme growth cycle (4-6 wks.) that could indicate relapse.

I think you would benefit from continuing with all the healthy changes you made when fighting Lyme.