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Help with Doxy meds

Hello!

I started taking Doxy on Monday after testing positive (well positive in my LLMD's mind) on a Western Blot. He said something about the IGG band which means its chronic (it has been more than 6 weeks).  200 mg a day for 6 weeks until I see him then we will discuss whether to up the dose or not. Just to remind everyone, I have been feeling sick since about late May 2013 (mostly neurological symptoms, tmj type symptoms and running low grade fever) and went to a gazillion doctors, a million tests, blood work and everything came back fine.

Anyways, I'm dying from the doxy. I'm almost positive.  The doxy is causing me severe diarrhea.  I already went out and bought the best probiotic I could find in my area.  I can't even take regular cold medicine without getting diarrhea.  Does anyone know how to stop this? I work a full time job so it's really an inconvenience.  And the stomach pain I got with the diarrhea last night was unbearable... I almost passed out while on the toilet! I am already a small girl to begin with, 5'4 and 110 lbs. soaking wet.  I feel like I am already losing weight because I poo out anything I'm eating. Or I feel too gross from the doxy to begin with that I can't even stomach the idea of food.

ALSO, I woke up this morning and everything hurts and is stiff and is cracking and popping.  I was expecting that with the "herx" and stuff.  But again, I'm starting to question if this is Lyme.  Mostly because I have neurological symptoms and I found this spot on the top of my spine/neck area that if I press on it, it generates the same dizziness/vertigo feeling I have been having for months.  Not to forget that my neurological symptoms started 2 days after I went to a chiropractor back in June who was very rough with me.  I always felt that maybe he messed something up but I don't know.  Also, the same spot I can press on that makes me very dizzy, also feels very...I can't even describe it. Like tight maybe? It constantly feels like there's little bubbles under there bubbling up to the surface and it becomes very stiff and tight. Again, like I said it's like the top of the spine in between my shoulder blades. I haven't gone back to the chiropractor but my aunt is a massage therapist and when I went to her for this weird tight feeling, when she massaged the same spot I'm talking about, I almost blacked out.  Not from pain but it just made me go like numb and made me very lightheaded.  Has anyone heard of anything like this with Lyme?

Please, if you have any comments/ideas/suggestions... please post them. I hope I'm not taking this awful medicine for no reason.
16 Responses
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1763947 tn?1334055319
There are no rules when it comes to Lyme symptoms because it affects everyone differently plus people get different co-infections that further complicate things. Unfortunately there is not one protocol that fits everybody.
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Avatar universal
Lyme bacteria like to hide in places in the body with low blood flow, because it helps the bacteria avoid the body's immune system.

Cartilage has low blood flow, so it might be hosting the Lyme bacteria, thus causing the symptoms you are having.  There isn't any one standard set of Lyme symptoms, which is one of the things that confuses the docs:  the variation in the symptoms reported by the patients.

The chiro might indeed have some insight from the other patients he has with Lyme.  Let us know how you do.
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Avatar universal
Thanks for the reply.  I do think I figured out a routine in taking my probiotic, eating, and taking the doxy where it hasn't upset my stomach since.

Do you know if Lyme can like "concentrate" in one area? This thing going on with my back... I don't know what it is but it's gotten worse since I started the doxy so I'm thinking it has something to do with the Lyme.  

I am going to see my chiropractor but JUST to talk to him.  I'm not letting him touch me at all. My aunt works for him and said he does have a couple other patients with Lyme so I'm hoping he will listen to me and try to comprehend what I am going through.  And maybe provide some answers as to what is going on with my back.  My weird back feeling is more towards my right shoulder blade and I noticed that it's a little swollen. Also today, I have extreme hand tremors in my right hand... I dropped 4 things at the store today one right after another. The woman next to me was looking at me like I was nuts.  
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Avatar universal
It does sound like you're herxing.  Yeah, it s-cks, but it doess pass.  The weakness you feel after an epsom salt bath is not a bad or uncommon thing.  You just need to rest and let your body eliminate the toxins being drawn out.  

I'd encourage you to avoid the chiropractor for a while. You don't want to add any stress to your joints while you have inflammation, while Lyme bacteria are dying, and while your body is trying to deal with the clean up.  

To avoid the stomach pain and diarrhea, take the Doxy part way through your meal so it's surrounded by food in the stomach. I had to eat a full meal with it. A snack wasn't enough.  The other commentor who mentioned not taking Oral Magnesium, Calcium, or Zinc with it makes an important point, as these absorb the medicine. (Epsom salts through the skin are okay.)  This includes dairy products and other high calcium foods.  Even something like Tums is a no-no within a couple hours either side of a Doxy dose.

Get a good probiotic, one in the refridgerator. Take it with food at lunch, away from the Doxy.  I have 3 different ones and I rotate them to keep a variety of good flora going in to my gut. If you're still struggling with diarrhea, I have found Intestimax to be quite soothing.  IgG2000DF has also been very helpful for my digestion.  (I've had chronic GI issues for over 2 years now.)

Treating Lyme can be as bad as having Lyme.  Sometimes it's hard to comprehend as we expect to feel better when we start treatment.  But tick borne diseases don't play by these "rules."  You can actually feel worse for a while after starting treatment.

Take time off as you need to.  Don't let yourself get overtired or push yourself to the point where you feel you might pass out or collapse.  Overdoing it can suppress the immune system, which is like tying one hand behind your back in the fight against this disease.  The antibiotics can't do the job by itself.  It needs your immune system to work with it.

Hang in there and stick with treatment!  If you're just miserable on the Doxy or the diarrhea won't clear up, then ask to switch to something easier on your gut.  It might take longer to treat, but staying functional is important.  I went from orals to Bicillin shots to give my stomach a break, and the Bicillin worked quite well for me...although with your weight, you might not have the "real estate" to tolerate the shots.   ;)
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Avatar universal
I really think it's something with my back.  The area that is giving me trouble is swollen.  No one has ever done any kind of tests on my back yet.
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Avatar universal
Have you called your doctor's office?  We are just people on a website and aren't qualified to tell you what to do.  

Any doctor will have a service that passes urgent messages through to the doc and the doc's staff even after hours.

Please call your doc's office and tell them what your message above says, okay?

Let us know how you do -- take care --
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Avatar universal
Please help. My neurological symptoms are getting WORSE since taking the doxy.  I can barely stand up straight because I'm so dizzy.  The weird feeling in my back between my shoulders has gotten worse.  I've been taking Epsom salt baths to help detox and when I do, it feels like something is trying to push itself out of my skin from the inside in that area of my shoulders/back.  I also feel the worst after I take one of these baths...super dizzy.  My arms and legs are getting like pins and needles and numb like.  I'm twitching everywhere.  

I'm starting to think it's something with my spine, like a tumor or something and nothing to do with Lyme.  Does anyone else have an opinion? I'm desperate. I cannot go on living like this.  
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Avatar universal
I too have suffered the cracking and popping on doxy every joint except elbows and toes. Just come off it after being on300mg/day. I haven't suffered with the GI issues though. I have also suffered minorly with doxy burns.

With taking magnesium, zinc and calcium make sure you take them two hours either side of the doxy or your body won't absorb the doxy.

On the upside it has helped immensely in restoring my brain from under the heavy cloud of brain fog.
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1763947 tn?1334055319
The activated charcoal is a natural way of easing the herxing. It helps absorb the toxins. It should be taken 3 hours before or after your medication.
There are prescriptions your doctor can give you but I found the charcoal to work for me.

I am glad you called your doctor. Did I mention taking a probiotic? That helps with tummy troubles and doesn't interfere with the medication.
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Avatar universal
Good, glad you called the doc.  That's what they are there for.  

Everyone has a different reaction to meds, partly because our immune systems are all different and especially because the 'Lyme' ticks so often carry other infections that have their own mix of symptoms and need separate drugs that give a variety of reactions.  Nothing's easy!

Sometimes the symptoms ramp up as the bacteria die and spew their nasty little chemicals into your body -- you'll see the term "Herx", short for Herxheimer reaction, named after the doc who realized that symptoms can get worse as bacteria die off and let loose their irritating chemicals into your body.  

Sometimes tho it's a reaction to the meds themselves that you are having, and since it's hard (esp. at first) to know whether something is a Herx or a medication reaction, checking with the doc is the prudent thing to do.

Are you taking any supplements like magnesium (Mg)?  Lyme bacteria use up Mg in the body, leading to deficiency which can cause twitching and confusion and misery.  Hard to tell what's Lyme and what's Mg deficiency, but taking some Mg is something you might try.  

Just be sure to tell your doc at your next appointment what supps and vitamins you are taking.  Some docs want a list at each appointment of what supps/vits you are taking so they can be sure you are not working at cross-purposes with other meds; some docs aren't interested.

Any kind of Mg supplement ending in "-ate" is supposed to be the most absorbable:  magnesium malate, orotate, aspartate, citrate, etc.  I take one that is a combo of citrate, aspartate and orotate, have also taken malate in the past.  All work fine.

I was cautioned not to take CalMag, the combo pill, because it is not particularly absorbable for reasons I don't know.  

Because my memory was such a mess when I really ill with Lyme, I kept notes of how I was feeling and what I was taking each day, reviewing my notes before my next appointment so I could give the doc a summary.  The rare doc will ask to see your detailed daily notes, which is great, but many just want a summary.  I had three columns on my computer page:  date/time // what meds I took, stating dosage, and what I ate // and how I felt

That way before my next appointment, I could review and give a summary to the doc instead of blanking out.  Ha.

Take care, hang in there -- we've all been where you are.  

You hang in there!  
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Avatar universal
A nurse called me back. I think she was about 13 years old! Anyways, she said give the doxy more time, that it is known to cause stomach problems and if it continues, to call again and they will try something else.
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Avatar universal
okay now I am having twitching in the area on my neck that feels tight and stiff. Normal? I feel better otherwise, like no more tremors, weakness. That lasted for about an hour or so. Waiting for a call back from the doc. That office is impossible to get a hold of anyone.
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Avatar universal
Did you take a different antibiotic or did you try the natural route? I want to try both...since I think a lot of my symptoms are neurological, I feel like I need the antibiotic, but would also like to supplement that with some herbs/supplements. I usually follow a drug free lifestyle, barely take anything except Midol maybe so I think it's why my body usually has a bad reaction when I DO need to take something strong.  

I'm going to call the doc now. I'll let you guys know what he says.  
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Avatar universal
Sorry to hear you are having such a reaction.  I would definitely call the doc's office and tell them your symptoms, just so the doc is aware and can make the call as to whether to change meds or whatever.

I didn't take doxy or charcoal, so can't speak to that, but really -- report in to the doc's office.

My motto:  don't be a hero.  This is what the doc is for.

Hope you're better soon -- keep us posted.  [now go call the doc!]  
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Avatar universal
Thanks for replying.

I took the doxy this morning and have not had any stomach problems yet. It seems to be at night maybe cause it's when I eat the most food at dinner. I don't know. But I know I cannot go through such severe pain as I had last night.

Right now, I feel AWFUL. Just about an hour ago, I started feeling strange. I feel very weak, like in my muscles.  I feel like all energy was drained out of me.  I'm having severe tremors in my hands.  I feel foggy too like I'm in a dream world or something.  I feel like I'm shaking from the inside out. Is this herxing? And there is nothing in the charcoal pills that will interact with the doxy? I work right next to a natural store so I can go on my lunch and buy them, I just saw those pills there the other day.
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1763947 tn?1334055319
I am more convinced now that you have Lyme. There is something called Neuro Lyme where it affects your neurological system and the co-infection Bartonella also affects you neurologically.

While what you are experiencing could be a herx, I get diarrhea when I herx, I would call the doctor and tell him about it.

I get numb and I am always dizzy with my Lyme/Bart's. Cures could be taking a probiotic, if it is a herx then taking activated charcoal pills helps the problems with herxes or your doctor might call something in for you.

I would definitely let your doc know about your symptoms and perhaps he will change your meds. Herxing is not pleasant but is part of getting through Lyme for some people.
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