Relapse but with different symptoms?

Hi all,

Just looking for confirmation. Though I've had improvements since starting the Buhner protocol last month (yay) I still find it odd that I developed two new symptoms after all these years of dealing with Lyme/CoInfections with two periods of active treatment and two periods of remission.

I listed my old symptoms that are gone and that list outnumbers what's left, but I know when I get close to feeling better I get more frustrated that making it the last 5-10% is so time consuming. I am grateful for where I am, don't get me wrong. No more depression, anxiety, generally sleeping well. and mood generally stable (unless the toddler gets into a bit tantrum).

Since all my tests always com back negative (other than bands 41/58) including negative for all coinfections, I sometimes have a bit of doubt that this new jaw numbness this is actually Lyme but not something else.

I've always had neuro/neuropathy symptoms but this jaw/cheek thing is weird. Plus my stomach was been a wreck for months and it does not seem to be diet related. Maybe just Lyme manifesting in other ways?

Of course, I also just upped by core Buhner protocol to (in essence) 3 capsules 3x a day on Thursday so that might be making these new symptoms slightly more pronounced at the moment. Also, I take powder now, so the amounts may be different than capsules with 1/2-1 tsp 3x a day or each.

Hope everyone is doing well today! Thanks for listening!

Jason

Hi Traveler-

The history is this:

Relapse in November with normal Lyme/maybe bart neuro symptoms. LLMD had me on MCBAR2 and coptis and nani. Did not notice major improvements in symptoms (neuropathy, anxiety, insomnia, calf twitching) but developed loose stool.

After a few months on MCBAR2 I was experiencing major stomach pain.

Was tested for GI stuff, only found citrobacter in my stomach as well as low good bacteria. Have been taking a good protiotic all along. Also ran a nutrition screen to check for intolerances. Wheat popped up (not gluten) but my naturopath an I decided since I ate wheat a lot on vacations and was symptoms free on vacation, that wise not a culprit. Also switched to a ketogenic diet for two weeks and felt like crap with no difference in stool.

My LLMD took me off all antimicrobials in April. I'm not sure why, buy it's why I switched to a naturopath. So I was on nothing until jaw numbness started on July 1. That was scary. It was the first new symptom I've had in years. At that point we decided to start the Buhner core protocol as it pointed to tick borne issues.

After starting the core protocol at 2 capsules 3 times a day, I had improvements in anxiety, depression, insomnia (resolved). So something was happening. Jaw numbness turned to pain then faded to occasionally noticeable by the beginning of August same with calf twitching. After a few good stretches (maybe 95%) dropped back to 90%.

We upped the herbs to 3 caps 3x daily this past Thursday and the jaw numbness came back stronger - not pain or as bad as before. But still present. Added homepathic st john wort for nerve issues. I asked about binders but she is not a fan of chlorella as she feels the quality is iffy and a lot of times the chlorella can suck up metals and things from the location in which it's farmed.

Yet, through all of this, the bowel movements was varied between a 5 and 6.

For detox:
Exercise daily
FarIR sauna daily at night (15-20 minutes)
ACV, when I think about it
64 oz water daily, at least

I did activated charcoal for awhile with my last relapse. I was never sure if it did anything beyond making a mess in my sink. Might be worth looking into again.

No change in the probiotic. I had been eating homemade yogurt for breakfast since the end of July. Stopped last week. Wondering if that might be causing problems.

I also took S. boulardii for a few months in Feb/Mar and it didn't improve anything then.

I have a history of going strong with all the antimicrobials I'm on. I'm sure low and slow is better, but I have always felt I could power through as things are manageable with the hope it gets me back to remission sooner. Probably inverse thinking.

I can try to detox more. I generally have found exercise and sauna/sweating have always worked the best for me. But lately, I can't deal with more than 15-20 minutes in the sauna at 125. I'm not sure why this has changed recently. I feel fine afterward, I just find I get too hot in there.

Thanks for the guidance,
Jason

The AC made a mess of your sink? How so?

I take capsules and swallow them.

Were you using powder and spitting it out?

Girlie-

The AC was in a loose powder form I'd mix with water. It would typically either splash out when mixing it or the powder was so fine it would not all make it in the cup. It was very hard to clean. My wife hated it. (Or I am just messy).

Jason

Traveler,

That's why I switched doctors. The LLMD (who is a very good one and high in the ILADS world) I guess felt treatment wasn't necessary even though I had symptoms. Maybe the LLMD just gave up or really felt it was just a diet related thing causing symptoms.

Since I had no symptoms (other than minor insomnia and loose-ish stool, but better) while on a cruising and eating anything I wanted, my NP and I ruled out diet.

We were working on the hypothesis maybe this was a stress related thing. I even called the LLMD and they felt if I had no symptoms on vacation it wasn't an active infection.

I wasn't totally convinced, but, once the jaw numbness started I knew I had to get treated again. That was in late July and when I joined here.

(I was also hoping maybe something in my journey since 2007 with some remissions and lots of antibiotics and herbal treatments might help someone else.)

Jason,

I'm seriously thinking Bartonella here.

If I were in your shoes, I would get on Buhner's protocol for Bart, which includes knotweed, which is the mainstay for Lyme, and stay on it. I believe Buhner said on the website to do the Bart protocol for 30 days, but the book doesn't say 30 days. I believe it's more like a year.

Good point on thyroid, Traveler. Mine all tested fine first time around, but on relapse it's a different story. It all gets confusing and mixed together.