posted
I know that's a loaded question in a Lyme Disease forum. LOL
But really... I was sick for a long time and my first month on abx, I actually felt pretty good.
In fact, I was worried that maybe they weren't working b/c I didn't feel "worse before I felt better" like everyone said.
Now I'm in my 6th week and I feel terrible. I'm tired, I am depressed, I am achy with shooting pains. I feel worse now than I did before!!!!
I thought maybe I was herxing, but I read that only lasts a few hours to a few days.
This started over a week ago. I got better for a day or two, then went down hill from there. :-(
I just want to lay in my bed and cry, I'm really struggling! :-(
And I felt so good for the first 3-4 weeks... better than I'd felt in years. I was so excited! Now I'm having a huge let down.
Posts: 173 | From Washington, DC | Registered: Oct 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Hi Sparkly,
The same thing happened to me at about the 6th week of just doxy.
Bb are great adaptors!
That is why docs recommend switching abx at about the 6 week mark, or sooner.
Sounds like Bb is not being killed by the doxy.
Time to add in a cyst buster (Tinidazole, Flagyl) or switch to a new combo of abx.
Sorry you're going through this.
Bb is the very devil at getting used to the same med, especially in monotherapy. It's done one full life cycle (4 weeks), and already the "new" generation is resistent to doxy.
Dr. B's guidelines has different oral abx and doses that work. Keep in mind combos work the best at killing Bb.
Best, Greta
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Thanks Greta... I just called and made an appointment with my doctor for Monday afternoon.
I'm not due for another 2 weeks, but I feel too crummy...
I'm having a really bad "Why me?" week... as I'm sure all of us have had many times! :-(
Posts: 173 | From Washington, DC | Registered: Oct 2013
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posted
So if that's the case... does that mean I'm starting over and the last 6 weeks of antibiotics were a waste? :-(
Posts: 173 | From Washington, DC | Registered: Oct 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Sparkly
I'm sorry it's been such a rough week for you.
There is nothing so discouraging as when you feel better and then the bugs catch up and get the better of you.
I'm warming up my Transporter...I'll be there in 15... Let's jet over to Italy...we'll start our morning out right with a cappucino in a piazza, and flirt with some Italian men...and if we're still there at noon we'll have some red wine too.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Sparkly, This is totally normal. I feel like I've been through that same thing with a lot of the abx I've taken. I know it just sucks. I'm on doxy right now too and I'm nauseas and in pain (although not as bad as in the beginning) too. Will pray you feel better quickly. Hugs
Posts: 96 | From Missouri | Registered: Oct 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I followed the same pattern. Felt great for a month, then CRASH!
My first herx lasted for a year.
No, you have not wasted these meds. If you are only on Doxy, you need to treat co-infections, too. If you are on a combo, your detox pathways reached critical mass and can no longer control your inflammation. So you feel like crud.
This could go on for a while. Good to check in with your doc.
quote:Originally posted by BoxerMom: I followed the same pattern. Felt great for a month, then CRASH!
My first herx lasted for a year.
No, you have not wasted these meds. If you are only on Doxy, you need to treat co-infections, too. If you are on a combo, your detox pathways reached critical mass and can no longer control your inflammation. So you feel like crud.
This could go on for a while. Good to check in with your doc.
A year - wow! I knew this would be a long road, so I don't know why I'm boo-hoo'ing...
Honestly, the emotional rollercoaster is killing me. I'm ok with going home and laying on the couch and watching Sister Wives (don't judge LOL) for the evening.
But I just feel so down about not feeling well... and about not feeling like I'm making progress. That's what is really bothering me. Feeling like I've stopped making progress!!!
I spent so long being sick, I don't want to stop making progress!! Posts: 173 | From Washington, DC | Registered: Oct 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Oh gosh no.
Not a waste!
Doxy also is effective against RMSF, Mycoplasma, erlichia and anaplasma.
Not sure at what dose... Pretty sure the CDC says 200 mg /day. My RMSF was treated with 400 mg/day.
In vitro, when the lyme spirochetes encounter doxy, they go from the spiral, moving form to a cyst form.
They remain in this cyst form until the doxy is removed, or until they adapt to doxy, and Bb then goes back into the active, spiral form, reproducing etc.
Lyme also changes it's outer protein/coat, Osp C Osp A, etc to adapt to different environments and to hide from our immune system.
It confuses the heck out of our immune systems.
So when you started doxy, you killed some of the weaker spirochetes, and about 70% of the strong, resilient buggers went into cyst form. (if the in vitro testing is used as an example).
Now, 6 weeks in, the surviving ones, the ones that weren't killed by the doxy, (especially at a low dose-say 200 mg doxy/day), emerged from the dormant cyst form, started moving around and reproducing. Perhaps they changed their outer membrane/coat, and now they are moving around freely, wreaking havoc on your body.
That's why tinidazole is so great!
It has less side effects than Flagyl, and in vitro kills spirochetes, cyst form AND l-form Bb.
Dr. B's guidelines are an awesome read and contain recommended doses and explains combo abx, and the cyst and l forms in a much more scientific way than I just did (haha), to give to your doc.
If you go by IDSA treatment recommendations and doses, there's a good chance the Bb in your body will become resistant to those abx and you won't get well.
Perhaps when those guidelines were written, there was adequate treatment, but Bb has adapted and changed so much, and science is learning more, the IDSA guidelines are no longer current.
Is there any way you can see an LLMD?
If your gp seems open to treating lyme, giving your gp a copy of Dr. B's guidelines is a good place to start.
Glad you have an appt.
Ps. If other LN members see errors in my explanation above, please correct me! I am not on my desktop computer and can't reference the notes I took about how Bb evades abx. I am going from memory. (scary!!!)
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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I think my dr. will be open to making whatever changes I ask... she's very open minded and lyme friendly, even if not llmd.
I'm going to ask her the specific questions you raise and will bring a copy of Dr. B's guidelines as a reference and see how that goes.
I think she will make some changes to my abx.
If she doesn't and insists I stick with the 200mg of doxy, then I will look into LLMD (although I highly doubt she will say that - I really can't picture it).
So far she has agreed with and tested for anything I've asked for. I think she would have added more abx at my last appointment if I'd asked...
But at the time I was feeling really good, so I all I asked for was if I could stay the course and get another refill of doxy - which she did.
I think this appointment will give me a good feel for whether I need to seek LLMD or if I am ok staying here for now.
Posts: 173 | From Washington, DC | Registered: Oct 2013
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posted
P.S. (how do you edit a post? I wanted to edit it to add):
THANK YOU for taking the time to type all that up for me! It was HUGE help!
Posts: 173 | From Washington, DC | Registered: Oct 2013
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Also remember Sunday was the full moon and then we also had a terrible weather system change that came thru many states.
sparkly, I don't know if DC area got the horrible barometric pressure or not? Something to consider why this week sucks.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Pam... (haha, I just realized your username is your name backwards - I like it).
Yes, we had the pressure change!
Posts: 173 | From Washington, DC | Registered: Oct 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
First, Greta, see? that is precisely why we need you on this board. you explain things so we can understand!!!! I'm telling you, there is a career here for you.
Sparkly, sorry you're feeling bad. I also feel amazing on doxy until I don't too. But since treating lyme I have not taken it solo.
But one thing to question your dr. about (or get this board to weigh in on,) is one of the side effects of doxy is aggravated lupus symptoms... when I asked my dr. about that she thought that probably in most people (even if not being treated for lyme) it was a herx.
are you detoxing? lemon water, epsom baths?
also, when I feel this way for too long, I take a day or two off of everything but abx. I think sometimes the supplements (or fillers in them) build up and make us feel bad. (not scientific, just my own two cents)
Posts: 1728 | From USA | Registered: May 2011
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I can't do the Epsom salts because I only have a shower. Unless I can do a foot bath?
I will get some organic lemons tomorrow!
I just woke up feeling very off. Ugh. Sweaty, nauseous. I checked my temp, but it's only 97.2. I hate feeling like this!
Posts: 173 | From Washington, DC | Registered: Oct 2013
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Kudzuslipper
Frequent Contributor (1K+ posts)
Member # 31915
posted
Sorry sparkly. Hope it breaks soon and you feel better.
Posts: 1728 | From USA | Registered: May 2011
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