Lyme Roller Coaster- Abx Questions

[renschwa]

Hello everybody...

So I started off my treatment with 2 months of Doxy. Then my LLMD had to take me off of it b/c I got extreme sun sensitivity last month and some other side effects. However, my lyme symptoms themselves- the muscle aches, burning muscle aches, twitches, tingling- all were SO much better. I almost felt normal. But 4 weeks ago LLMD put me on Azythromycin and I just started Plaquenil yesterday (which I think is giving me intestinal issues). Since starting azythromycin many of my lyme symptoms are back again and I'm so damn frustrated b/c I really thought I was getting better. Has anyone every used this Azythromycin for lyme? Maybe it's not strong enough or something? I see my LLMD on Monday and am wondering if we should switch to something else.

Also, does anyone know how Plaquenil works on Lyme?

[renschwa]

Our stories do sound similar Kamrynkade. Thanks for posting!!!! Here's to a speedy recovery for everyone!

So last week I had oral surgery- had a cyst removed in my mouth- not fun as you can imagine. So I was worried that my lyme would freak out but actually it was as if it knew I could only handle one thing at a time LOL. I had terrible muscle twitches leading up to surgery (probably bought on by anxiety I'm guessing) but after surgery I can say I had no real lyme symptoms until saturday like- 3-4 days post surgery. Figures it couldn't stay for good though! But even at that, my syptoms are mild right now, fingers crossed it stays that way!

[kamrynkade]

Hi,

I hope you've been doing better in the past few days.  I am definately on the roller coaster as well.  I've been having symptoms since December and been in treatment since early February.  My symptoms match yours almost exactly except I also have been having panic attacks that last about 3 hours.  I had awhile where I was feeling better and I promised my sister I would bring the kids and visit her in London in July!  I wonder if I will actually do it.  

I also doubt my diagnosis from time to time.   I've looked into everything like you...MS, lupus , thyroid etc.  Lyme seems to be the only one that fit my symptoms and their duration.  Of course I also tested positive.  

I keep telling myself I caught it earlier than most people.  Had treatment within 6 weeks of symptoms...but I don't remember when I was bit.  I really hope we can look back in a year and be feeling like ourselves!    

[JackieCalifornia]

Hi --

Prague sounds fabulous!  I too have concerns when I travel that I will just fall over somewhere and not be able to cope, but so far, I've made some fairly strenuous trips, and my bod hangs in there and gets me home, no worse for the wear.  I hope the same for you!

I too have Lyme and Ehrlichiosis, and have not yet gone on abx.  It's been almost a year since I was bitten, and the symptoms are fading with time, but I know the bugs won't go away without a little help.

Hang in there!

[renschwa]

And yes, I have Ehrlichiosis co-infection

[renschwa]

Thanks Wonko! I can see now that I'm not alone with the roller coaster feeling!

I had gotten to the point where I had no symptoms for maybe a week or 2. So I thought yes, lyme must be the correct Dx.  Then we changed the meds and wham, they are all back. My prior herxing tended to be intense symptoms for short periods of time, like an hour or so, like a huge lyme wave hitting me LOL. So I haven't really thought of this as herxing but I guess it's possible. I just have the same old crap every day, muscle aches, twitching, burning, neck pain. And all of that I thought was gone but no such luck...

Thanks for the posts too. They were helpful. As you know I've had some auto-immuney stuff going on too. My ANA and SSA were + but I'm not diagnosed with anything b/c all other blood work/markers are normal. Rheumie says many people walk around with pos+ SSA and never get a disease. He said there's not enough evidence of any disease for me to be on meds plus you can't be on them with lyme infection anyway. I was suprised that my rheumie said lyme can bother you for a year or more (he's not a LLMD).

But I always wonder is it really lyme or something else?... My symptoms are pretty constant. That week or 2 where I felt great was about it since this all started last October.
What I have noticed is that the brain fog, my balance, face pains, and the vibration  feelings have gotten better so that gives me hope that maybe the Abx are working and Dx is correct.

I know lupus and ms tend to be flaring diseases, not sure about other auto-immune diseases. I thought I had Sjogrens b/c I have a cyst in my mouth- seems it is either infected salivary gland or a stone. Having it removed next week. So I told the surgeon about sjogrens and he said no, he does not think I have it from the look of my mouth.  I saw an eye doc for plaquenil clearance and he also said he saw no signs of sjogrens. I am frustrated b/c it has been one thing after another and like you said wonko, it's like you can't make plans. When I was feeling well I booked a trip to Prague for october now I'm scared to death something will happen  and I will not make it. I tell myself you'll get there and you'll do what you can and make the most of it... but it's hard thinking that way. I went from healthy and kickboxing 6 days a week to unhealthy quite literally over night w/o warning (another reason I sometimes lean more towards Lyme Dx).

I swear I really feel like a hypo and I was never like this. Now I notice any little thing out of whack on my body and freak out! I'm so thankful for this forum! Hearing your experiences is so helpful!!!!

[wonko]

Just for "fun," I did a community search of the words "roller coaster."  A few hits are linked below at the end of this post.  So know you are not alone on that front!

I am taking zith and have taken plaquenil.  I also have experienced feeling better off, or at reduced, treatment, only to yet again Herx when treatment resumes or increases.  The interpretation of this pattern is that you are still sick.  

Recovering from Lyme is not a linear improvement.  Given the natural cycles of the bugs themselves, along with the Herxheimer reactions, it is expected that you'll go through ups and downs.  I know how emotionally frustrating that can be, as it really complicated ever making plans because of how unreliable it makes us.

As we often say around here, grasp onto the good days and gut it out on the bad.

Do you have co-infections?  My LLMD uses the zith to treat my Bart.  Plaquenil I've read to be effective both against Babesia and the cyst-form of Lyme disease.  But always ask your doc to clarify what med is being used for what bug/reason.  If you are having Herx reactions, I wouldn't worry about it not being strong enough.  But perhaps you are questioning if your worsened state is due to Herxing or just active infection.  That's always a tough issue to decipher, and sadly, other than patiently waiting for improvement, I don't know how to test it.

Here are some "roller coaster" posts from the past:


http://www.medhelp.org/posts/Lyme-Disease/Roller-coaster/show/1126486

http://www.medhelp.org/posts/Lyme-Disease/Flare-up-yesterday-and-today--What-gives/show/933201

http://www.medhelp.org/posts/Lyme-Disease/Doubts/show/944319

http://www.medhelp.org/posts/Lyme-Disease/The-Roller-Coaster-Continues/show/762426