Pain moving to joints w/ antibiotics-Is this the right course of action?

I know this sounds counter intuitive, but with Lyme, an increase of pain or new symptoms showing up after beginning a new treatment is almost always from herxing.

The only other things you want to watch out for are allergic reactions which usually include hives, itching, swelling etc. and also a drug reaction. In my experience, I have found that over 90% of the time my increases or new symptoms that come are due to herxing.

Are you seeing a LLMD? How old is your daughter? A lot of LLMD's use very high dose amoxicillin (sometimes with probenecid to raise blood levels further) along with a macrolide and cyst-buster to go after all 3 forms of Lyme.

Concerned Mom,

I'm sort of in the same spot as your daughter as in beginning of treatment. After 3 weeks of abx my joints stopped aching and started cracking...a lot. Think about it this way...lets say you've had a UTI or a sinus infection before. When I've been put on abx for stuff like that I don't feel any different, maybe tired..after a few days you feel better. No joints ache or random pains like that. It only hurts because its working (as long as it doesn't hurt too much). Herbs work because they have the same antibiotic properties so I wouldn't expect too much of a gentler path but lots have said that it isn't as rough, so who knows. I just finished reading the book Deejavu suggested Stephen Buhner's "Healing Lyme" Its great. What i love about it is in the back, he cites like 30 pages worth of scientific articles- and the book is very straightfwd, easy read. He suggests using Smilax herb (I think) for herx's.
Ironically, the author is best known for herbal use and being somewhat anti -abx. But in the book, he states that though he is well known for herbals, that their has been some miraculous recoveries of people with lyme using abx. He also says that you can use his protocol simultaneously with abx.

Summer3-I forgot to ask, what is a macrolid? Also what's a cyst buster (in terms of lyme)? Thanks.

Hey Concerned Mom -
I too mostly had muscle pains. When I started abx, I started on minocycline. It was a low dose and after about 2 days I was getting dizzier and my hips were killing me. It got worse before it got better but the fact that it was in my hips and fingers was very different for me. I ended up struggling to walk up and down stairs it was so painful and I was so stiff. I believe that the die off was causing a detoxing issue for me. It took me quite a while to figure this out. What you all are doing is wonderful. For me, one of my quick go tos that helps me when I'm herxing is activated charcoal. I take two capsules with lots of water. For me within 2 hours my symptoms improve giving me relief. It doesn't get rid of everything but it absorbs a bunch of the toxins in your gutt and for me lessens the symptoms. Hope you all can find some relief.

Thanks for the detoxing ideas. Much appreciated. Summer, you asked about whether it's chronic or or not...my daughter's symptoms started when she was about 8 and she's now 13 and was just diagnosed last week. She is literally the ONLY person her GP has ever diagnosed with Lyme and he's probably been practicing for 20 years or more. Every summer we do a lot of camping and the year I believe she contracted it, we were traveling for a month straight tent camping in the national parks out west. Also around that time there were problems with ticks in our yard. (They've just become more problematic in MI in the past several years but we're told our area isn't known to be a Lyme area yet.) The bottom line is that we don't know exactly how or when she got this nasty stuff but her pain started at about 8 years old and around that same time she also went through a period of severe headaches that resulted in a CAT scan and no conclusions as to the problem. As for the muscle pain, we also were told (we got the smile too) that it was growing pains. After she recently had the chicken pox her symptoms have really seemed to flare with diziness being her newest symptom.

On Monday I'll be starting to make calls now that we have numbers for some LLMDs in MI. There are only a few and I'm told many docs won't see youth so I'm kinda anxious about that.In the meantime, I'm hoping we're doing the right thing by hainv her go ahead and start the doxycycline as recommended by her GP. He thought we ought to do something while we waited to see someone who knows about Lyme. He referred us to a contagious disease specialist and we have an appointment on the 18th that we'll probably only keep if we can't find an LLMD.

I'm guessing her current dose of antibiotics (100 mg 2x daily) isn't adequate because she only had herxing for a couple days and then yesterday said she felt the best she has in weeks. The rest of the pain is the same but the headache and dizziness are gone. Sure wish we had a good doc already. Wish us luck finding one!

If anything I'm saying seems off kilter I do appreciate feedback cuz I'm new to this mess and need all the direction I can get.

You all are a real lifeline for me already. Thanks.

My daughter doesn't have muscle spasms or cramps she simply has pain and weakness. Until recently this has been her most consistent symptom and it's mostly in her legs. Only recently have her arms also started to feel week and at times like they tingle. I'm thinking the muscle weakness seems to match up to some the co-infections so it may be more about that. I appreciate the heads up about lemon juice. I'd been putting it in her water and somehow I was questioning that and your message validates that hunch.

Yeah, based on what I'm hearing I'm surprised too. She had just started with the headaches again. She does have a terrible problem with memory and spaciness and it's something her coaches and teachers have talked more and more about. This past year was the first time one of her coaches said maybe she needed to be on medication for ADD. I also see the anxiety quite a bit although her father tends to struggle with anxiety quite a bit too so I think some of that is just in her genes. Other than that we've just seen her become increasingly tired and she began to show some depression but that seemed to be mostly about being tired of the leg pain and not wanting to do the things she usually enjoys.

I guess I misunderstood about the lemon juice thing and appreciate the explanation. I'll look into that some more.

TW-I can't say that I understand what you're going through with the physical pain bc I'm on this blog bc my daughter is struggling with this nasty bacteria, not me. I just wanted to say that my heart goes out to you though. I'm learning about lyme myself since my daughter was just diagnosed but I have heard others say that getting worse in some ways means you're getting better (herxing) so in some small way, hopefully you can take heart in that.

Do you have a bathtub? I know for my daughter it is SO helpful. When she's completely whipped she does some exfoliating and then gets into a good epsom salt bath. (And thanks to some helpful advice received in this website, she adds peroxide on occasion for a little boost.) This activity doesn't take much energy but does seem to help her maybe as much for the comfort as for the detox and slight pain relief.

Just hang in there. You must have some hope in there or you wouldn't be reaching out. You'll get through this!!!