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When taking antibitotics do symptoms initially get worse?

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Posted 12/9/2011 2:11 AM (GMT 0)
Hello again-

Sorry I was just diagnosed and just starting to research. I though I'd read that symptoms may get worse, but not entirely sure. Getting nervous because I feel so weird. Like my whole body is so heavy it's hard to move and my mind is floating in outer space. Lots of aches and pains and major headache. Anxious too. TAking doxycyline 100 mg twice a day.

I do appreciate any feedback.

Lymeylicious smhair

Posted 12/9/2011 2:29 AM (GMT 0)
Don't worry. You might feel worse and might even have new symptoms. When the bacteria die they release toxins into your body. This is called the Herxheimer effect. Also known as just Herx. This is how you know the Doxy is working.

My Herx included burning sore muscles especially in my thighs. It felt like I rode a bike 100 miles. I also got weird burning headaches. A Herx can cause other symptoms as well... it's different for everyone.

Get as much rest as possible, take naps, and stay hydrated. Lots of water and green tea is good. Do you know how long you were infected for? Hope you feel better soon. Good luck.
Posted 12/9/2011 3:17 AM (GMT 0)
Thank you. I'm actually here getting anxious and you're helpingme to feel better. THe headache is burning, yeah. My left eye is also drooping A LOT.

I don't know how long I was infected for. Do you know if there's a way to find out?

Drinking decaf green w/ chamomile now...

thanks again. Wonder if my eye will look normal again????
Posted 12/9/2011 5:05 AM (GMT 0)
Yes, unfortunately symptoms often get worse because of the die-off/herx. Hydrating is key like mysterylyme said, and also gentle exercise is really important to move the toxins around so they can get out of your system easier (otherwise they stay in tissues and cause lots of symptoms).

When I first started antibiotic treatment I got A LOT worse, but with time the herxing is much less severe. I hardly notice it anymore, to be honest, and I'm on high doses of 3 different antibiotics! Just hang in there, and most importantly take care of yourself. Your body has a big job to do and you've got to support it as best you can!
Posted 12/9/2011 11:55 AM (GMT 0)
Hi lymey and welcome!

You may want to start on a detox routine (the instructions is in the sticky thread called "New to Lyme? Start Here!" as I believe no one should have to herx.   The toxins from die-offs cause all these horrible symptoms and if you get these toxins out of your body you are going to feel lots better! 

If the toxins stay inside they only get recycled back into your body again causing more problems....

Hope this helps,

Denise

Posted 12/9/2011 8:18 PM (GMT 0)
Thank you very much Veteran Members!

I have been eating the detox foods from "Healing with Whole Foods," (great book!!) following the detox instructions on "New to Lyme": just finished with my acupuncturist who did a detox treatment on me and will again each week. As soon as I have enough energy I'll go to bikram yoga.

I'm so glad you guys are here!!
Posted 12/8/2012 12:59 PM (GMT 0)
Hi everyone,

I just took my first doxycycline capsule last night. After about 20 minutes I started feeling those sensations.  They pretty much came and went all night long.  I was ready to go see the doctor today, but luckily I found all of you and these posts.

Looks like I am experiencing the herxing.  Glad to know it's normal and I'm not alone with it.  I have read on a couple other posts that it might get a little worse before it gets better. 

So how bad has it gotten for some of you? Has it kept you from going into work any days? My sales job has me up on my feet walking around all day long and driving around the city.  I'm hoping its not going to affect how I do.

I just took capsule #2 this morning, only 40 more to go before hopefully I'm lyme free.

 

Posted 12/8/2012 1:16 PM (GMT 0)
Hi Limeylicious and Hbd,

How bad it gets kind of depends on how severe you are to start and how much of the infection is circulating in your body and being killed off at a given time.

Have you had Lyme long-term? Is doxy @ 200mg per day the only thing that you will be doing as far as a protocol? The reason I ask is because doxy at that dose is generally not helpful for late stage Lyme and there is research to suggest that it may actually support the conversion of Lyme bacteria to the cystic form.

Most Lyme-literate doctors have patients on a combination that includes a drug to go after the spirochete, a macrolide for the cell wall deficient form and a drug or herb for the cystic form. That doesn't include treatment for co-infections which are common to get. They may start with low dose doxy, but the goal is usually to attack all forms of Lyme. 200mg is a very low dose of doxy.

So in short, if this was a brand new infection, you may be okay with 200mg of doxy for a month, but if you have chronic Lyme, you will probably need to find a LLMD and get on some proper treatment whether that's a strong combination of herbs or a stronger antibiotic protocol.
Posted 12/8/2012 2:03 PM (GMT 0)
Hi summer3,

i was just diagnosed monday, on vacation, and once I got back yesterday I picked up my prescription and took my first doxy capsule.  I was told it was acute lyme, and the doctor told me she could tell its only been "months." i'm not sure if that's considered to be that long of a time or not, but she prescribed 100mg doxy caps, twice a day for 3 weeks, and then I'm supposed to have followup bloodwork done the week of feb 11. she said i need to wait until then to give it time to see if it clears up or something like that.  she didnt prescribe anything else to take. do you think i should ask about additional meds? also, for herxing, id like to try to detox to help, but do you know of any other options besides the baths? baths are difficult to do as theyre very time consuming, maybe there are other methods?

thanks for your response and info!

 

Posted 12/8/2012 2:23 PM (GMT 0)
Lemon water and alka seltzer gold are good for detoxing.

If you haven't had long-term symptoms then you might be okay with a few weeks of doxy. Just beware that if your symptoms come back after you finish doxy the doctor you saw is probably not going to be much help to you any longer. She is most likely running ELISA tests to prove or disprove Lyme infection which is not an accurate method of testing. In Lyme disease, diagnosis should always be clinical.

Whenever I read posts like these I get worried for people. I never expected Lyme to be a serious condition for me. I was in a similar situation when I first got sick with Lyme. I went to a regular doctor, got 28 days of doxy and was told I was cured even though I continued to have a lot of symptoms. I then was sent to other doctors who told me there was nothing wrong with me. I started to get signs of organ damage and had severe neurological symptoms including seizures. In the months that I was bounced around from doctor to doctor, I went from a daily long-distance runner to barely able to get out of bed. Now it's very difficult to see any progress since the infection has progressed so far.

I'm not trying to scare you with this post as a lot of people DO get better from acute cases of Lyme with doxy. Acute cases are much different than chronic cases. The thing that scares me is that a lot of people start to believe their doctor when they are told that they don't have Lyme after doxy (even if they continue to have tons of Lyme symptoms and had a known infection!). They then accept diagnoses of chronic fatigue, fibromyalgia, stress, depression, etc. It causes a lot of unneeded suffering and progression of the disease.

So if you feel better after doxy, that's great. You caught it early. If your symptoms come back or never go fully away, find a LLMD ASAP. You won't be able to convince a non-Lyme literate doctor to treat you appropriately for chronic or long-standing Lyme disease and co-infections. It's not worth your time to try to convince someone to treat you who has no desire in learning about the current research and ramifications of chronic Lyme disease.
Posted 12/9/2012 1:48 PM (GMT 0)
Summer3,
thanks for your input, i truly appreciate it. i have picked up a body brush and some alka-seltzer gold, and i am going to try to go on a healthy food kick for the next few weeks. i also picked up some epson salts and will attempt to start the baths. I definitely want to do what i can to help get rid of these toxins.

i think i will follow these instructions from my general doctor, but afterwards i may look into finding a LLMD just to make sure it's completely gone. i am supposed to see a neurologist soon as well. the longest syptom i had was lightheadedness but i think this "brainfog" ive read about might be the best descriptive word i've seen. i guess the neuro will check to see if there is anything else along with the lyme.

summer, were you diagosed with acute or chronic? it seems like the treatment methods for the two are different, but detoxing methods seem to be the same.

thanks
Posted 12/9/2012 3:41 PM (GMT 0)
Summer3, Can you point me to the research related to the low dose of Doxy possibly causing an increase in the conversion of the Lyme to the cystic form? My 13 yo daughter is also on 200 mg of doxy daily at this point while we're searching for an LLMD. We do know her case is chronic. I have been worried that we might be making the problem worse at this point and appreciate any resources we can take to her doc to ask for a higher dose while we wait to get in with an LLMD somewhere. Also, you say most LLMDs prescribe a combo including a macrolid for the cell wall deficient form (would that be the doxy?) and a drug or herb for the cystic form. Did I understand you correctly. If so, can you, or someone, tell me what herbs or drugs and doses are often prescribed to attack the cystic form?
Posted 12/9/2012 5:55 PM (GMT 0)
The dose is irrelevant in causing conversion. I don't have the link but if you google Eva Sapi+Lyme you'll find the paper which was published in Townsend Letter.
Posted 12/9/2012 6:33 PM (GMT 0)
200 mgs of doxy will only be bacteriostatic - keeping the bacteria from reproducing- not bactericidal - killing the bacteria. It takes 400 to 600 mgs of Doxy a day in order to actually kill the bacteria. www.news-medical.net/news/2004/10/21/5741.aspx

From "Advanced Topics in Lyme Disease" by Joseph Burrascano (which can be found in our "New to Lyme?" thread):
"There are four types of antibiotics in general use for Bb treatment. The TETRACYCLINES, including doxycycline and minocycline, are bacteriostatic unless given in high doses. If high blood levels are not attained, treatment failures in early and late disease are common. However, these high doses can be difficult to tolerate.
For example, doxycycline can be very effective but only if adequate blood levels are achieved either by high oral doses (300 to 600 mg daily) or by parenteral administration. Kill kinetics indicate that a large spike in blood and tissue levels is more effective than sustained levels, which is why with doxycycline, oral doses of 200 mg bid (twice a day) is more effective than 100 mg qid (4 times a day). Likewise, this is why IV doses of 400 mg once a day is more effective than any oral regimen."

Now this doesn't explain that some doctors will want you to slowly build up to the higher dosage, especially if you (or your child) has been quite ill or has a long-standing infection in order to prevent serious herxing.

Hbd
Forgive me, but 3 weeks of abx at 200 mgs a day may have you feeling well at the end, but it won't kill off the bacteria no matter how little time you have had the infection. These are incredibly complex infections - part of the reason why there is so little research on them - the other part is because of the stupid controversy.

Even if you were taking 600 mgs of Doxy a day, 3 weeks will only knock the infection down, leaving enough of the bacteria to come roaring back out once you are under enough physical stress - even something as simple as having to move can bring out Lyme that hasn't been treated thoroughly. It needs to be put into full remission.

Doc's that aren't specifically educated by ILADS often get things wrong. Please do your research to save yourself from chronic Lyme which is much, much harder to put into remission.
Posted 12/10/2012 5:49 PM (GMT 0)
Irrespective of the dose, when attacked by Doxy and other antibiotics, Bb will convert to cystic form and/or biofilm-like colonies based on Sapi's papers.
Posted 12/12/2012 3:31 AM (GMT 0)
lymelicious and HBD- I just wanted to reiterate what others have said to you. Doxy alone is not enough to treat Lyme Disease. I would highly recommend that you go ahead and begin searching for a LLMD. Most of them schedule months out and it may require travel for you to see one. You need a Dr. that follows ILADS guidelines. And, please know that there is not an accurate test to confirm that Lyme is gone or in remission. Generally, LLMDS treat for about 2 months after symptoms are gone. I would just hate to see you suffer unnecessarily because you haven't had adequate treatment.
I saw over 30 Drs. in one year for neurological and GI problems, vision changes, muscle and joint pain, etc. and NONE of them "believed" in Lyme Disease. I got sicker and sicker and severely suffered for over a year because no one diagnosed and treated me properly. Now, after 4 months of abx. treatment, I'm improving a lot. If I had been treated by a regular infectious disease or PCP, there is no way that I would be getting better. Another thing is, there are many co-infections involved w/ Lyme Disease that need to be treated and require different medications than the Lyme Bacteria. The only Drs. that are knowledgeable and able to properly treat are LLMDs. I have Bartonella and was initially just getting worse on Lyme treatment because the Bart. was not being treated. I now have a LLMD that added Bart treatment in and I've seen significant improvement since.

I really would recommend researching Lyme Disease and the co-infections as much as possible and finding a LLMD ASAP! I hope you don't find this to be too forceful. Like I said, I just hate to see anyone suffer unnecessarily.
Posted 12/12/2012 3:23 PM (GMT 0)
Bikram yoga sounds great - actually, yoga, in general. Be aware, though, that Bickram Yoga may actually INCREASE your herxing since it is done in a HEATED environment - heat in the body and oxygenated blood will kill more critters. In the long run, this is GOOD but maybe not early-on as your body has enough detoxing to do. Can you do the Hatha yoga or even restorative yoga first, then, as your herxes subside, transition to Bickram?
Posted 12/28/2016 5:42 AM (GMT 0)
what is proper bartenella treatment? i have that n my dr only gave me 200mg doxy a day after being sick for fifteen years. at day 9 here, im worse than before treatment. All llmds anywhere near me are all nauropathss n im barely above poverty line so i sure can't afford supplements n accupuncture.
Posted 12/28/2016 5:51 AM (GMT 0)
Hi mazon, welcome to our community!

Both Lyme and Bartonella treatment require more than one antibiotic.
Also, the doxy dosage is low.
It should be 200 mg twice daily.

One of the more effective treatments for Bartonella is Rifampin paired with another antibiotic - biaxin, minocycline, azithromycin, bactrim, or doxycycline.

I suggest you start a new thread titled: "looking for LLMD in/near ______" and fill in the blank.
There may be some LLMD"s near you that you aren't aware of...that other members can recommend.

I don't know if they would take insurance, though.

We encourage all new members to take a look through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

Are you taking probiotics? It is very important when on antibiotics. The bacteria that the doxycycline is killing in your gut...needs to be replenished.

You are feeling worse because the treatment has killed off the bacteria which in turn has created toxins that are flooding your system. These toxins create inflammation, which results in an increase in your symptoms.
You should be detoxing to help flush the toxins out of your body.

Some ideas:
- Drink at least 8 glasses of water daily
- Squeeze some fresh lemon juice into some glasses. (Drink with a straw, to reduce damaging the teeth. And rinse with clear water after)
- Take warm epsom salt baths
- Dry brush your skin prior to the baths
- Take alka seltzer GOLD
- Support your liver with a supplement: eg. Milk thistle extract
- Take a binder to help flush out the toxins in your digestive system: eg.Activated charcoal.
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