I had my first LLMD appt last week and it went well. I was starting to feel better I thought the last couple weeks. The LLMD added more doxy and a new med and yesterday I was EXHAUSTED, like could only lay down and slept most of the day. I also just don't feel as good as before, is this typical? So frustrating.
Posted by outerspace1226 (Member # 34274) on :
Larae, Abosolutely. I knew I had lyme but didn't feel like hell. Then I saw an LLMD and she gave me doxy, then i felt a bit better. Then she added more doxy and flagyl(metrodinazole?) That literally put me out for the count...it makes me question if i should go off of it.
But all i've heard is "stay the course". But i think it would be abnormal for you to not feel like this. I can't express the frustration with this keyboard.
I know a few of people with lyme in my area and this is the routine. Just remember it's def normal.
Posted by Jennifer70 (Member # 30280) on :
Yes it is typical and a good sign that it's working. It's frustrating to feel like your going backward after feeling better, but your not...your making progress..hang in there.
Drink lot's of lemon water, take a warm epsom salt bath. There's lot's of herxing, detox advice on here to look up. Praying for you.
Posted by Larae30 (Member # 35220) on :
I hope this doesn't last long...
Posted by Summer3 (Member # 35286) on :
I had the same problem this week. I started two antibiotics after my first LLMD appointment. The first two days I felt terrible. People I didn't even know were commenting about how I didn't look well at the store.
I had several new symptoms appear and others got worse. Some severely, some slightly (like they have been for the past several months). It was hard for me to tell if it was a herx or the natural progression that had been occurring anyway.
Day 3 through 5 I had some periods of time throughout the day when I felt okay. Not okay by healthy people's standards. More like pre-antibiotic level of crappy instead of super bad like day 1-2.
Then today, I'm worse than day one of antibiotics. I feel like I have a horrible flu yet my temperature is it's "normal" 95. My muscles and joints are really hurting, I have no appetite, and I have no motivation to do anything that requires moving. Even my fingers are hurting me as I type this.
I am still not sure if I am having side effects to the medicine or a herx. I'm not very talkative at doctor's appointments, so I decided to make a chart where I organize the symptoms into four categories of frequency/severity: New, same, worse, better. I think it will make it easier for me to explain myself efficiently if it's written down while I have time rather than trying to remember everything and speak about it while I'm nervous. So far I have nothing in the "better" category.
Posted by aperture (Member # 34822) on :
Hi Larae,
Hang in there. I know it feels horrible. I feel like Lyme is so sneaky in that I seem to feel better (briefly) when I'm off of antibiotics, and horrible while on them.
It all seems counter-intuitive. I guess it's just the nature of treatment.
Somebody wrote that "you have to herx in order to heal". I keep that in mind when I feel awful.
However, I do keep in touch with my LLMD who makes adjustments as necessary.
Posted by Keebler (Member # 12673) on :
- Questions like this come by the dozens. People wondering if:
side effects to the medicine (or just characteristics or actions of certain Rx or even herbal items) . . .
a herxheimer reaction,
or, perhaps an individual problem of porphyrin or methylation processing, certain deficiencies, etc.
It can be any or all of those and more.
But it's important to also remember that just because one has started treating lyme (or other infection)
the effects of any one infection, itself, causes many symptoms and will continue to do so for quite a while. Some will wax and wane, some seem to rotate.
But these kind of infections do not just "get the notice" that treatment has started and then turn off.
Quite the opposite, usually.
These microbes can be relentless and are not about to give up the fight, without a fight. Medicine does not knock this out in a flash but, bit by bit.
I don't want to be a downer but, really, just because lyme is being treated does not mean that it's a rosy ride. No walk on the beach. Not a picnic.
Still, there are many support supplements, nutritious foods & self-care actions to help ease symptoms - or at least be able to roll with the punches. -
Posted by Larae30 (Member # 35220) on :
Yeah. My LLMD seemed very optimistic because I got a lyme diagnosis and started doxy within 3 months of my symptoms starting, so at least there is that hope. I don't know how people deal with it who went years and years undiagnosed, I feel so awful about the whole lyme situation and everyone it affects.
Posted by Keebler (Member # 12673) on :
- Larae,
I'm really sorry you've been clobbered by a harsh reality - just out of the blue (seemingly, since lyme education in our country is silenced. "Who would've thought?" eh?).
I hope that you can nurture and nourish yourself as much a possible. Sometimes, that is the best foundation for finding new aspects of peace and joy along the way.
Nourish, Nurture - and, yes, Hope. You have every reason to hope for a decent springtime, a pretty good summer and a far better holiday season next year.
Take care -
Posted by Keebler (Member # 12673) on :
- Larae,
Just because I caution that most of this is "just part of the deal" - I don't want to dissuade you from asking what can help this or that symptom or reaction,
so be sure to keep asking if you need relief - or just want some clarification about anything.
Magnesium and Fish Oil are standard answers for many symptoms. Beyond that, there are many things that can help.
Look over your LLMD's "herx management" plan for you but if you have other questions, Please do ask. Not all LLMDs practice the same way, especially regarding supplement support.
LymeNet posters have no shortage of persistence for finding things that might help. -
Posted by TF (Member # 14183) on :
Yep. You will almost always feel worse after adding a new med. That's because the new med will have a new killing profile (will kill germs that the previous meds could not kill) and when germs are killed, the patient feels yucky.
Feeling exhausted is typical. That's a herxheimer reaction, as they call it.
So, this is all seen as good. It means the med is working for you. You will gradually feel as good as you did before and then better.
Then, it will be time to add another new med and the pattern will repeat until you have treated all of your infections. Most people have at least lyme, babs, and bart.
Stay the course. It will not go on forever, but it is a slow process.
It is now nearly 7 years since I completed my lyme treatment and I am still symptom free, enjoying my life. So, you will have life after lyme for many years to come.
Posted by nonna05 (Member # 33557) on :
TF ,Thanks for sticking around... and encouraging that there is a future.
I was having a rough day ,symptoms above and ,kinda teary day and frustrated cause I've misplaced some very important papers.
I was feeling like this whole ordeal is my fault, it's in my head, I'm being a big baby and if I would just pull it together ,I wouldn't feel and be so stuck and feel so rotten so much of the time. Thanks
Posted by aperture (Member # 34822) on :
Yesterday I wanted to just throw all of my antibiotics and supplements in the trash and give up (after only 6 weeks of treatment). However, we all have to keep our eyes on the end goal. I want my life back and my husband and kids deserve their wife/mom back.
It is very encouraging to hear success stories like TF's.
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