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Just started antibiotics - could herxing be something other than Lyme?

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Posted 5/18/2013 11:12 PM (GMT 0)
Hi all,

After 10 years and dozens of doctor's visits trying to figure out the source of my chronic fatigue and many other persistent issues, I finally found a naturopath who thinks I might have Lyme disease.

He put me on 100mg of Minocycline twice a day and wants to see me after one month. He said that Lyme tests often yield false results and it's cheaper and faster to just take antibiotics and see how they impact me.

In the past I kept coming across Lyme as a potential cause of my fatigue but kept dismissing it for various reasons (including MDs telling me that it's impossible for Lyme to last this long).

I know very little about Lyme other than reading the sticky post on this forum for newbies and various other posts. I'm looking for some help to understand how the antibiotics are affecting me.

I've been taking them for 8 days now and since a couple minutes after the first pill I've had crazy headaches day and night. I'm also dizzy and lightheaded for hours after taking the pills.

A few times my sinuses became completely blocked and for hours I had to keep blowing my nose but couldn't clear it up - I just had to wait it out.

I see online that commonly people take Minocycline for acne, but nobody seems to mention these hardcore side effects that I'm experiencing.

From what I understand this is a herx reaction. But what I don't understand is: Is this a strong indicator that I have Lyme disease? Could reactions like this be caused by something other than Lyme?

Basically I don't want the reaction to mislead me into thinking I have Lyme if there's a possibility that my body just doesn't agree with Minocycline or if another disease can cause this reaction.

I've also read that detoxing is important so I've been doing 30 minute sessions in an infrared sauna. Since I started going to the sauna the headaches are beginning to subside.

I'm hoping that this means that I'm detoxing properly and that I'm basically sweating the dead bacteria right out of my pores.

What do those of you with more experience think about my situation?

Thanks everyone!
Ryan

Post Edited (michelinesbury) : 5/20/2013 10:50:16 AM (GMT-6)

Posted 5/19/2013 8:13 PM (GMT 0)
Hi Ryan,

I started Minocycline 2 1/2 weeks ago to treat chronic Lyme. 100mg once a day. After the second pill I felt like I'd been hit by a truck.. fatigue so bad I could hardly get out of bed, muscle pain especially in shoulders and neck, and the back of my skull felt like it was in a vice.

I called my LLMD to report symptoms and he cut me back to 4 days a week. This helped with muscle soreness and a bit of the fatigue. However I accidentally forgot and took another days dose, and wham I am feeling like crap again, dizziness, vertigo, left side numbness in foot and hand along with weakness especially in my left leg. So not sure if this is totally from the minocycline or just a bad 'lyme flare'. Dr has had me stop Minocycline all together and rest for couple days and go back at it with something else.

The best advice I have received from this forum is to listen to your body, and DETOX to support it. Sounds like you are having some sort of reaction to the mino, but best to call your doc to report the symptoms. Good luck, I hope you can find some relief and answers. This forum is a wealth of knowledge :)
Posted 5/19/2013 8:38 PM (GMT 0)
Thanks Crescent11. I'll be visiting my doc in a few weeks and I've created a daily log of my symptoms for him. The detoxing definitely seems to work - especially the infrared sauna.

I'm also going to ask if he thinks I should do the Igenex testing. I can deal with herx reactions, feeling like crap, etc (I've dealt with similar symptoms for 10 years already), but I want to be SURE that this is Lyme. I've been misled many times in the past - CFS, Candida, etc, etc - and wasted too much time and effort to keep going down the wrong paths.

BTW - does anyone know a good way to find a Lyme literate MD in Canada? I see advice for finding them in the states, but what about Canada? Specifically - I'm in Victoria, British Columbia.

Thanks again!
Ryan
Posted 5/20/2013 1:28 AM (GMT 0)
Welcome Ryan. I don't know anything about the drug, but I'm sure others on this site can give you some good advice. Detoxing is important and there are different ways to do so. Did you read the New to Lyme thread at the beginning of the forum? You may find some answers there. BTW, I love Victoria. I am from California, but I have lived in Oregon for the past 23 years. I would love to visit Vancouver Island again someday.
Posted 5/20/2013 2:38 AM (GMT 0)
I can't say you're wrong about Victoria, Cat53. I moved out here from Montreal, Quebec a few years ago - partly to see if my health problems were a result of my surroundings. My theory is that I got Lyme during one of many hiking trips to the Adirondack mountains in New York state.

I read the newbie thread and there's lots of great info there. Just nothing specifically saying that herxing = Lyme. That's why I'm still unsure of my condition. But for now I almost hope for a herx every time because for 10 years nothing I've tried has made a bit of difference (which would totally make sense if I've had Lyme the whole time).

Cheers,
Ryan
Posted 5/20/2013 4:14 PM (GMT 0)
It sounds like a typical herx. From what I understand, the only infections that cause a herxheimer reaction are lyme and lyme co-infections and syphillis.

Mino. can cause some dizziness that usually subsides about a week after starting it. That is a typical side-effect. I'm on Mino. and never had that, but did herx.

Typically, you'll know if you're herxing if your typical symptoms are intensified. Plus, you may have some new symptoms. Also, usually the severe herxing should lessen or go away within about 2 weeks. Although, some of us are constant herxers.

Due to the complexity of lyme disease and co-infections, it is difficult to treat. I would recommend finding a good LLMD (lyme literate MD) that is ILADS trained and experienced. If you post a new post with the state that you live in and that you are looking for a LLMD, you may get some responses. You can also go to the "new to lyme" thread on here for more info.

Your Naturopath is correct about the testing, it is highly inaccurate. The diagnosis should be a differential, clinical one. However, see if she'll order the IGENIX Western Blot. If it is positive, you may have an easier time with getting long-term abx. covered by insurance. Especially if you need to eventually go to IV abx. Also, there is a new culture test by Advance Labs that is supposed to be much more accurate. It's expensive, by may be worth it!
Posted 5/20/2013 4:48 PM (GMT 0)
That really helps for my next visit with my Naturopath. Fortunately where I live in Victoria, BC, Canada, Naturopaths are allowed to prescribe medication. Otherwise I don't know how I'd have ever gotten a prescription like I did (I purchased a 3 month supply of Mino and my insurance company paid for it).

I've read from others that there are no LLMDs in Canada - I hope that isn't true. I've already spent so much on previous therapies that it'll be hard to afford a trip to the states to see one.

Thanks again everyone - you guys are awesome! BTW I don't mean to whine when I say that my herxing is "hardcore" - I meant it in comparison to someone taking Mino for acne and having little to no side effects at all.

I understand that many of you go through much more severe reactions and I completely sympathize with how hard that must be for you.

Cheers,
Ryan
Posted 5/20/2013 6:26 PM (GMT 0)
Hi Ryan!
LOL! Herxing is hard core!! We understand! Welcome to our little community!!

I'm really glad to know that you have already read through our "New to Lyme" thread! It's so packed full of info, you've done yourself a favor!

I actually have some info for you about a possible LLMD for you if you would email me. Just click on the little blue envelope under my screen name and that should bring up your email client with my email already in place.

We don't allow doc's names and info to be posted on here due to the Admin saying not to do it and the fact that we want to protect our docs as much as we can. There is a terrible thing going on where the only doc's that understand these infections are being persecuted for helping us!! Some have lost everything - their license, their practice and tons of money trying to fight it! So it would be best if you would activate your email option in your profile so that you can communicate with others on here off the forum.

Mystery Illness has it right - only Lyme, Lyme co-infections and Syphilis have herxes, and you've received good information here.
Posted 5/20/2013 8:29 PM (GMT 0)
The question I have -and probably what Ryan is trying to figure out - is how do we know that something else isn't causing the herx reactions? How does one know the dizziness, headaches, etc. are an actual herx reaction? They aren't necessarily uncommon symptoms so this is what confuses me. Are these physical reactions based on assumptions since they occur after treatment or is there some other basis for calling them herxes? I am thinking if these aren't symptoms we normally experience then maybe they are herxes.
Posted 5/20/2013 10:52 PM (GMT 0)
A herx is defined as an increase in current symptoms, or new symptoms occurring after using some kind of anti-infective treatment - whether it be pharma abx, or herbal abx.

So one has to kind of know where they were with pain levels, headache frequency and severity and all the rest of the symptoms. Many find a daily journal to be a very valuable resource, as then one can just look back a few days (or weeks) and see what they were experiencing with which symptoms and the severity of them and compare with how they are doing now.

I came across one that I liked as it seemed quite comprehensive in it's coverage of Lyme - I'm not affiliated with the site in any way or form./tbijournal.com/Default.aspx

I was never good at journaling (eyes), but I do see it's value!
Posted 5/20/2013 11:28 PM (GMT 0)
I've been keeping what I call a "herx log" - marking down the daily symptoms. It will really help when I visit my Naturopath in a few weeks.

I definitely reacted to the Mino - I've been on a rollercoaster from the minute I took the first pill. I'm very interested to see what the Naturopath says to do next...
Posted 5/22/2013 10:45 PM (GMT 0)
Thanks Trav. I am not good at keeping journals either. I am going to assume that if Toby isn't feeling well after treatments, he is herxing. He never really experienced headaches or other common ailments so it may be easier to see any physical reactions as herxes. People think his emotional relapses are due to his ALS diagnosis, but I believe the depression and "needy" feelings are a result of Lyme. He was never like that before and had a hard time showing emotions.
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