And the experiment continues....

[nyxie63]

I've been completely off all lyme & co meds for 2 weeks now.

Overall, I'm a little more tired, but that could also be from the time of year as well. This is my "bad" time of year when things start hitting, emotions go downhill, and depression sets in for a good long stay. Today's the anniversary date of the accident, btw. I don't feel particularly depressed, but then maybe I'm so used to it by now I don't recognize it anymore.

What I'm finding interesting is, other than the fatigue, there really hasn't been any major change one way or the other. Not sure what this all means.

Would it be too early to tell if it was the meds or not? The only med that hasn't cleared my system by now is the Plaquenil. While the other meds clear your system in hours to days, Plaquenil can hang in there for 1-2 months.

Does this mean whatever's going on was getting worse while in treatment? If so, if it's not lyme, what is it? But then again, I've herxed so wouldn't that in itself be conclusive for lyme? The IV Rocephin got rid of my photosensitivity, but other neuro symptoms popped up or got worse. Dunno what to make of that.

Bah! Too full of questions and not enough answers.

Btw, the lyme doc never did call back when I left a message that I'm out of money and wanted their advice on a maintenance plan until we could afford them again. Go figure.

[LymeEnigma]

I noticed a slight increase in fatigue and a couple of other symptoms immediately after I went off all antibiotics; eventually I concluded that what I had experienced was some kind of withdrawal process. I was also on cat's claw at the time, which seemed to increase some symptoms while decreasing others, so that may have also played some part in all I went through during that time.

I have not had a flare bad enough to keep me in bed for more than a day for some time, now. I still get really bad fatigue on some days, am still extremely anxious and neurotic, and still suffer regular digestive problems, but I really do have to say that, overall, I'm better than I was six months ago. My knees barely swell up, anymore, and I have not had a frozen neck in several months. Brain fog, when it comes, is minimal. I do not believe I still suffer from active Lyme, although no one can convince me that those buggers aren't still in my system somewhere, just waiting for an opportunity to come back out. I also believe the babesia is still there, but under control. I believe my immune system was able to take over where the antibiotics left off, and I'm glad that I listened to my gut and took the chance to give it that shot.

I truly believe that many chronic Lyme patients remain so chronically ill because they are on too many antibiotics. Antibiotics are, I believe, necessary to give the body a helping hand at getting the Bb numbers reduced, but they are also very toxic, and wreck havoc on the immune system. I think far too many people freak out at the perceived backlash that comes with going off the meds, not staying off them long enough to see if the body might snap back on its own, after the med detox period has ended. Relapse is a valid and terrifying prospect, but unfortunately I think fear of relapse causes far too many people to stay on antibiotics for far too long. By no means do I agree with the IDSA "28 days of Doxy will do ya" mentality; I was on antibiotics for much longer than that ... but I think there comes a point when the antibiotics do more harm than good, and I think this is something far too few LLMDs take into consideration.

Just my two cents....

*edited to add a missed word.

[nyxie63]

Thanks for the 2 cents, LE. At least now I feel like my perceptions aren't all that far off base.

The LLMD I was seeing is extremely aggressive in treatment. Basically, he'll give you all the meds you can handle, and then some. If you can't handle that particular protocol, they switch you to a different, but still very strong, one.

Hubby's finally chiming in about the whole thing (about time!). He too has been concerned about my decline while on meds and is wondering if they haven't been doing more harm than good.

I was really kind of hoping some of my neuro symptoms would lighten up off the meds, especially since they flared or showed up on the meds. Nothing so far. I'd keep my fingers crossed, but they won't stay that way for long.

I'll be seeing a shiny new neuro in late January. She's supposed to do one heluva differential and was referred by my current neuro. She apparently screens for a huge number of pathogens known to cause neuro symptoms in addition to all the other standard neuro finding-outty stuff.

Hoping she'll either confirm the lyme dx or find out what's really wrong with me. Since I've only had a barely pos IgM from Igenex (out of numerous and varied methologies by 3 different labs), the doubt of the lyme dx is still niggling at me.

Even though there are plenty of meds left in my stash, I've decided I want to see her "clean". I also don't feel comfortable self-medicating, since I tend to have odd reactions to meds.

Really feel like I'm in limbo here. January can't come too soon.

[LymeEnigma]

I'll be keeping my fingers crossed for you until then. I'm so sorry that you're still having such terrible neuro symptoms, especially since they got so bad when you were on the meds. I really hope this new neurologist is able to get to the bottom of this. I know how frustrating the diagnostic limbo can be, and I hope you're able to find an end to yours soon.


*edited: your --> you're

[nyxie63]

Thanks LE!

Been doing gobs and gobs of research lately trying to figure out just what the hell is really wrong with me. Stumbled upon a clue. Ran across 2 websites this week. One on menopause and the other on epilepsy. Now bear in mind, it's not definitive. This may not even be probable. Then again, I'll follow any breadcrumb trail these days, just to see where it leads.

Turns out perimenopause can be more than just hot flashes and night sweats. It can be new allergies, parasthesias, food intolerances, other endocrine funkiness, cognitive dysfunction, slews of other health issues, and.... brace yourself.... can trigger seizures! Turns out, hormone fluxuations in general can trigger seizures called catamenial seizures.

So, of course this new info has me looking back at my past medical history.

Back when I was in my late teens and early 20s, I'd experience what one dr called "pre-migraine episodes". These episodes started with the feeling of water in my ear. That was my aura or "tell". I'd have to find a place to sit down... and quick! Then followed a minute or so of complete body weakness and inability to speak. I was perfectly aware, just couldn't move. Afterwards always felt tired.

I didn't think too much of these at the time. To be honest, I was really casual about my health back then and ignored things that probably should have been followed up on. The above-mentioned doc didn't suggest doing any follow up and we both pretty much pretended it didn't exist.

Then, 3 days following the birth of my son, I started with full-blown daily migraines. 3 months straight of full-blown daily migraines. Finally dragged my carcass to a neuro (referred by my ob/gyn). Normal EEG, no other testing. Diagnosed with migraines, handed a script for Midrin (which did absolutely nothing for me), and off I went.

For the next 16 years, I dealt with the migraines largely by taking large doses of excedrin and lying on on the sofa for up to 3 days at a time. These always came just before my monthly cycle. I'd also get them if I'd been overly tired, sleep too much, had more than 2 drinks in one night, etc. I could even expect one every Saturday, when I was trying to just relax at home. At one point, I was getting these for about half out of of every month.

And it wasn't just pain and sensitivity to light/sound. I'd occasionally get visual auras and olfactory hallucinations. I'd be nauseous and have GI purging from both ends. I'd also have gastroperesis during these (we've talked about this before). When I vomited, I'd see ghosts of meals past, sometimes ingested as much as 18 hours prior (lunch the day before). Yeah, sorry for the TMI again.

Then, about 6 years ago, perimenopause started. As an added bonus, my migraines became fewer and fewer. However, during this past year, the peri seems to have kicked into full force. Missing a lot of periods. Coincidentally, this year is when the wake-n-shakes started. I've read a little about hormones, perimenopause, and seizures and am wondering if this is what's going on. Goodness knows I've had enough hormonal screwiness in my life. Still, I'm trying not to get too excited or take all this too seriously.

Were my pre-migraine episodes really seizures? Were the migraines really migraines? Have I really been having undiagnosed seizures for nearly 30 years? Has perimenopause finally brought all this to a head? Are all my symptoms really being caused by a hormonal imbalance? Am I barking up the wrong tree here? Am I reading far too much into this? Do I really want a sandwich right now?

Threw in the last question so at least I could have an answer to one of them. ;D

Now that I've been doing all this reading, thinking, and looking back these past few days, I feel more urgently than ever that I need to find a decent doc. The problem is who? A gyn to deal with the hormonal issues (which really do need to be addressed). Another neuro who doesn't try to push me out of his office in 3 minutes and will answer questions. Who?

[LymeEnigma]

Wow, that's a lot of really interesting information! I read somewhere that seizures and migraines can have similar effects on the brain, and that some doctors even consider them to be in the same "family" of disorders. I think this definitely merits more research ... but I think you may be onto something, here.

You might want to consider a gynecologist and a neurologist ... and see if the two might be willing to join efforts, to get to the bottom of this.

I do know that Lyme and babesia wrecked havoc on my hormones, but I hate to keep barking up that tree, when there are obviously so many other possibilities to consider....

*edited to fix a typo.