LymeNet Flash: Tingling - doxycycline or Lyme?

This is topic Tingling - doxycycline or Lyme? in forum Medical Questions at LymeNet Flash.

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Posted by NearlyBetterNow on :

Hiya.

Although I'm new, I've been devouring all the info I can get hold of. (Your newbie links were extremely helpful - thank you!) I'm only posting this question as I seem to be having great difficulties with the search function on this site and googling hasn't helped ... Can anyone advise?

I've recently been having real problems with tingling in my hands and arms and sometimes my toes. It only came on when my doxycycline was upped from 200mg a day to 300mg. The tingling gets worse if I've been out in the sun (despite sunblock - the doxy has made me rather sun-sensitive).

I've read different opinions as to the cause of this tingling - some say it's spirochete die-off, others say it's just a symptom of Lyme. I know I read somewhere else that it's a common side effect of doxycycline. I don't know which to believe, so was trying to search for the definitive answer.

So what is actually causing this tingling? I care because if it's from the Lyme, then I'll need to convince my doctor to continue prescribing me doxycycline (she has agreed to let me have it for 4 weeks after my presenting Lyme symptoms have disappeared - but the tingling wasn't an original symptom...). If it's just a side-effect of doxycycline then I'm happy to just ingore it, as aside from the tingling I'm much, much better - virtually back to normal (I thank God every day for that, believe me).

Sorry for the long post and sorry if this has been covered before.

Posted by concerned (Member # 7561) on :

it seems that what your discribing could be neuropathy= which can be a symptom of lyme - but in my opinion cuz it started with meds it is more than likely caused by doxy - ignoring it may not be the answer! had similar experience when flagyl dose was raised - check on the side effect for doxy and see if nearopathy is one of them - its probably in the side effects considered less common, the question is if you are getting nearopathy from drug is it going to do perminant damage to your nerve endings-

i dont know - i would explain to your doc when you see him next and maybe lower dose to when you didnt get these tingling feelings

when taking flagyl it was so bad couldnt even walk, still have tingling even when flagyl stopped but then again had it before flagyl started - just got much much worse with flagyl

Posted by Lyddie on :

Numbness, tingling, burning etc. are my main Lyme symptoms. I would say (I'm only speculating) that the higher dose of doxy is working better and stirring up more Lyme activity. If this is true, then you are still dealing with active Lyme symptoms. It would be good to keep going for awhile on the higher dose, until the tingling goes away for a good period of time (2-3 months?).

Is 4 weeks the total number of weeks you've been treated, or did you mean you doctor will keep you on an additional 4 weeks,after a longer period on abx?

Posted by concerned (Member # 7561) on :

this could be 100% accurate but, when you look at side effects for flagyl for example and it says nearopathy is one of them - and my LLD says they dont know if its herx type reaction or side effect of drug, could be either or.

but the part that struck me funny about this persons thread is that they said it only started when doxy was raised and they didnt have this symptom prior to use of doxy tells me maybe, maybe not!

if you already have nearopathy as symptom and then it gets worse then that sounds more like herx since we all know that all symptoms get worse with herx

but if never had that symptom until drug then what?

this is the problem isnt it - how do you know if your having a bad drug reaction or a herx

Posted by janet thomas (Member # 7122) on :

Could you stay out of the sun? Doxy causes sun sensitivity and you may burn easily. I have tingly feelings also. I am on IM Bicillin and ketek. I think it's (tingly) from the Lyme. A bit of herxing.

Doxy is often used initially because it is effective against Lyme and Ehrlicia, a co-infection. How long have you been on doxy?

After 2 months or so, another abx can be used-there are many LLMDs use, and sometimes in combination. Go to www.ilads.org, treatment guidelines and you will find their treatment guidelines. Does it say there to treat for at least 2 months after all symptoms are gone?

Has your doctor tested for/evaluated you for co-infections? If not, you may want to consult a doctor with more experience in tick borne illness. Support groups, to the left, may help with that.

janet

Posted by janet thomas (Member # 7122) on :

Sorry, I just noticed you are from the UK so I don't know if you have support groups there. Have you been to Eurolyme?

Posted by NearlyBetterNow on :

To concerned: Eek! Thanks for the info - I'll check it out.

To Lyddie: I wasn't very clear, was I? Sorry.

I got bitten by a tick the end of March. I started getting symptoms end of April. I got treated with erythromycin for 2 weeks but got worse.

My doctor diagnosed Lyme clinically by June and put me on 200mg doxy for 3 weeks. As my symptoms were a little better but not resolved, I persuaded her to up the dose to 300mg based on extracts I'd printed from medical journals, and to let me take it for 4 weeks after my symptoms resolve.

However, she thinks that I've been on antibiotics long enough to be 'cured' already, so I think I'll struggle to persuade her that my remaining symptoms are from Lyme (if indeed they are?).

I'm currently on week 2 of my doctor's 4 week extension...

Posted by Michelle M (Member # 7200) on :

I'd really watch it... the "tingling" you describe, for me at least, was always a sign I was MICROWAVING myself.

Forget sunscreen, it really doesn't help very much, just gives you false confidence.

Just stay out of the sun while you're on it.

I would actually tingle, then go kind of numb.

Then the next day, pain and swelling.

Doxy is hell in the summer!

It's a great drug but a bummer for sunshine and stomachs.

I'm glad it's helped you feel better, though!

Michelle M

Posted by Lymeindunkirk (Member # 7118) on :

I had the tingling and pinpricks long before I ever began treatment. I can tell you that once I started treatment ALL my symptoms intensified for approximately a month. I also expereienced other symptoms that I hadn't had prior to treatment. I went through a rough herxing period. I am presently on doxy and I am no longer experiencing the tingling or pinpricks as often.
Meds effect people different ways thought. So I can't say for sure it is the doxy. I am specualating but wondering if perhaps you are herxing.

Posted by groovy2 (Member # 6304) on :

Hi NBW
the doxi and sun thing was a Huge side effect
for me--A few minutes in sun I would be
--Burned to a Crisp--blisters in 10 min.

I read that eating Citrus while taking
doxi can cause this effect--
I was drinking lemonade every day---

So I cut out All Citrus from my diet.
All of it..

Now this bad side effect is 95% Gone.

I went threw 2 long years of Hell
because I was drinking lemonade.

I also feel the citrus may also make
the doxi less effective..

I have noticed that I have had more
good days-- sence I stoped eating citrus.

Ever small amounts of citrus seams to
cause this bad effect and it can
happen Fast-- in hours--

Doxi and Citrus equals Pain--

Google-- Photo Toxic

For me 300mg was not enough--I had to
up to 600mg doxi for best effect--

I have had the Tingles for about 3
months now--May have somthing to do
with info above?--dont know
But I never really had the tingles
before---

Doxi has to be taken carefully.
Read instructions
Take on time--dont miss doses--

For 2 hours Dont--
Eat Dairy
Take vitimans -Minerals-antiacids ect.

Doxi has Really helped me--
I just Tookanotherone--Jay--

Posted by NearlyBetterNow on :

Hi all - thanks for the info!

To concerned and lymeindunkirk: mmmm, I think you both summed up my quandary - yeah it *might* be a herx, but because it's a new symptom I also suspect it to be because of the doxy. As I said, I'm only very recently infected. My bloods came back 'equivocal' with a positive on IgM only, which I thought was impressive as they were taken whilst I was on the first batch of antibiotics.

To groovy2: I'm not a big fan of citrus, but will approach it with caution anyway. Ta!

To Michelle: LOL about the microwaving!

To Janet: Normally I get all my questions answered via EuroLyme. But one of the frequent contributors there recently asked this very same question, but she only got a couple of replies - no one really seemed to know. So rather than post an identical request, I thought I'd ask on this more active site and feedback any additional advice I get.

Hmm, so no definite answers, but thanks all very much for sharing your experiences - I'm definitely getting the impression that my problems are due to doxy + sun or cold [no tingling sat here in the office, but lots when the sun hits my arms and face or a cool wind blows over them]. Luckily in the UK it's not *that* sunny, so I guess avoiding the sun altogether is certainly an option...

So tentatively then, I guess this is good news [ie for me this is probably not Lyme]?

Last question: how long after I come off doxycycline can I expect the sun sensitivity to last? Googling has given me different answers (as expected - everyone is different I guess). But what are peoples' experiences?

Posted by Lyddie on :

I'll preface this by saying everyone is different, But ofr the first 2 years of treatment I blamed my increased tingling in the sun on tetracycline or doxycycline. Then it was just as bad on amoxicilllin the 3rd summer. I still had to put towels over my arms while driving!

A lot of people with neurological Lyme symptoms on their skin (burning, tingling ewtc.) experience a worsening of these sensations in the sun.

I actually had a skin biopsy at one poitn which showee autoimmmune activity. I also ahve a positive ANA, which sometimes suggests lupus, but, I believe, is just another result of my Lyme.

In the sun, sunblock with titanium dioxide (Neutrogena sensitive skin) helps a lot.

Again, you may have a totally different situation. Esp. since your bite is more recent, adn you are overall feeling better.

BTW when I first went on antibiotics, I slurred my speech, which I had never done before. I don't do this anymore, but I would also slur my speech whenever I changed to another med.

Posted by Marz (Member # 3446) on :

Are neuropathies a constant thing only? I have a slight burning/tingling feeling in my feet, but usually only when I go to bed ie)in a horizontal position. I'm noticing it a little more in the daytime recently, but the whole thing is pretty minor.

It seems to me that if it's nerve damage, you'd feel it all the time, so I've not been concerned, especially since it's so minor

My other theory is that it's candida(?)

Posted by Marz (Member # 3446) on :

Are neuropathies a constant thing only? I have a slight burning/tingling in my feet when I go to bed (ie when I'm in a horizontal position. I'm not on any antibiotics. Occasionally I feel it during the daytime but only recently.

Since neuropathies are nerve damage, I'm thinking you'd feel it all the time, so I haven't been at all concerned, especially since it's so minor.

My other theory is that it could be candida (?)

Since neuropathies are nerve damage, I'm thinking you'd feel it all the time, so I haven't been at all concerned, especially since it's so minor.

My other theory is that it could be candida (?)

Posted by pq (Member # 6886) on :

I believe some literature on doxy said not to take this with the Bcomplex vitamins, and I think that it specifically named thiamine.
but verify this. check many sources.

Posted by Lyddie on :

Neuropathies aren't constant...and as treatment continues become even less so. Even with positive nerve conduction studies indicating some permanent damage, my sensations/pain aren't constant. I don't know why this is and have had the same thought, that if this reflects damage, the neuropathy should always be there and at the same level. But it isn't. Maybe someone else can explain.

Posted by jellyfish (Member # 7390) on :

Hi there. I figured i would add to this post, since my question was related to meds and tingling.

I have had tingling as a sx of lyme before, but i just started my abx this morning, and the tingling is making me nuts in both my lower legs and feet.

I started them the other day by mistake(haha) i took one dose and hten realized i was supposed to start today, so i can collect urine for die off..blah blah, but anyway, it happened within hours of me taking the zith and ceftin the other day, and now again. (I am on the right day now i think!!)

So maybe its the lyme acting up? A herx perhaps? MY LLMD's PA told me that some people herx on the first day of meds. All depends on where the lyme is and what abx is used.

Good luck!...jellyfish

Posted by Marz (Member # 3446) on :

Is neuropathy a constant thing you feel all the time? I have slight burning/tingling in my feet when I go to bed ie) in a horizontal position. I'm not on abx. Recently, I'm aware of it occasionally in the daytime sitting up too.

Since neuropathy is caused by damage, I'm thinking you'd feel it all of the time, so I haven't been concerned. Especially since it's so minor.

Or could it be yeast?