diagnosed with Lyme disease & taken doxycycline

[lucylo92]

Hello, this is my first post here so I'm hoping someone can help and give some advice.

It was only about a month ago I noticed I developed a rash on the inner part of my right knee which was very red and raised a little. Over the days it gradually got bigger and looked like a bullseye. It was occasionally itchy and is still the same size however it is slowly fading and isn't as red.

Following this I went to see my doctor worrying I may have lyme disease who straight away said it looks like Erythema migrans so he prescribed me with 14 days of doxycycline 100mg twice a day.

I have now finished my 14 days and still feeling ill (always tired, feeling sickly, headaches/pains on and off every day and head can sometimes feel fuzzy and like it's going to burst! ) and it is very rare that I ever get headaches generally.

I am getting worried now that the antibiotics may not have worked properly so was wondering if anyone could advice how long after taking doxycycline you start to feel better.

My doctor did say see how I go after finishing them and if I'm still not good then go back to see him and he will contact the specialist to find out the next step (as he was honest and admitted he doesn't know much about lyme). I don't know whether I should go back sooner or give it a couple of weeks and just see.

Please can anyone advise?

Thank you in advance!

[JackieCalifornia]

You ask, "Is it possible for the symptoms to be due to my immune system over reacting from the doxycycline which I finished 2 weeks ago or is that something the docs like to assume?"

I am not medically trained, but I would not think that your immune system has simply reacted to the presence of doxycycline (since the doxy would not try to kill off your immune system), *but* if the doxy is killing Lyme bacteria, then you could be experiencing the side effects from die-off by the Lyme, in which toxins from the Lyme bacteria are released into the human body and cause feeling quite lousy.  That is a fairly common reaction, and one which may confirm the presence of Lyme in your body along with tests.  (And bear in mind that some tests are better -- meaning more accurate --  than others.)

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About finding a Lyme specialist in the UK, I searched online just now for

              --   "Manchester England" Lyme disease   --

and got some interesting links.  I have pasted below brief quotes which may be helpful in finding a Lyme specialist and also in understanding which MDs think they understand Lyme but really do not:

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[My comment about the following quote is that it is 'old think' about Lyme, stating flatly that 'most ticks in the the UK are not infected by ... Lyme'.  That is wishful thinking that diminishes the risks and misery of Lyme.]

"Note: most ticks in the UK are not infected by the bacterium that causes Lyme disease. Therefore, most tick bites will not cause Lyme disease. After a human has been bitten by a tick, it usually takes 24-48 hours for the bacteria in the tick to pass into the human."  (from Lyme Disease. UK Treatment & Symptoms; Information ... patient.info/health/lyme-disease-leaflet)
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     [My comment:  this thinking is, from what I read, very much out-of-date.  It 'usually' take 24 - 48 hours for the bacteria to move from the tick into the human body--??  So ... ticks are wearing wrist watches now?  The problem is that many or most of us do not know when we were bitten, may have never see a tick on themselves [this was quite true in my family -- the Lyme ticks are the size of the period at the end of a sentence]
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    Lyme disease - NHS Choices
    www.   nhs.uk/.../Lyme-disease/.../Introduction.asp...

National Health Service -- by NHS Choices - ‎2013:

"Note: most ticks in the UK are not infected by the bacterium that causes Lyme disease."

     [My comment:  Reallly???  and how does one know that?  Do they do tiny little survey questionnaires to present and inquire?  So many of us do not know when we were bitten that this is a ridiculous statement.]

"Therefore, most tick bites will not cause Lyme disease. After a human has been bitten by a tick, it usually takes 24-48 hours for the bacteria in the tick to pass into the human."

     [My comment:  Show me the proof.  The ticks are so tiny that many of of us (including me and my family) never saw the tick at all and are very unclear as to when they were bitten.]
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From the BBC:  

"Ignorance of tick-borne Lyme disease 'costing lives' " - BBC.com
www.   bbc.com/news/health-22468181 -- May 12, 2013"

[Hurrah for the BBC!]

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From the (UK) Daily Mail newspaper:

" - Lyme disease is a bacterial infection that is spread to humans by infected ticks. ...   Lyme disease UK cases soar as staycationers told to ..."  

from www.   dailymail.co.uk/.../Lyme-disease-UK-cases-soar...

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[This is likely closer to the trend:]

"Daily Mail, Mar 28, 2012 - In 2010 there were 905 confirmed cases of Lyme disease in England and Wales, compared with 340 in 2002.  ..."
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[Here is a clip closer to reality than many other commenters portray:]

About Ticks - Lyme Disease Action
www.   lymediseaseaction.  org.  uk/about-ticks/
Public Health England have produced a longer 3 minute video with some very ... it is possible to be infected with Lyme disease anywhere in the UK: countryside, ...
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[... and here is another:]

British Lyme Disease Foundation - wadhurst.demon.co.uk
www.  wadhurst.demon.co.uk/lyme/

Mark Greenfield is a sufferer of Lyme disease and has a useful single page site with information and links.
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[From the UK's 'Daily Mirror' newspaper:]

Lyme disease warning as plague of ticks expected to swarm ...
www.  mirror.co.uk › News › UK News › Lyme diseaseDaily Mirror

Jun 26, 2015 - Experts are warning that a midsummer plague of millions of ticks could cripple people across Britain. ...
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Well, you get the point.  This same process pertains in the US in many areas, where the physicians have been taught that Lyme is rare, hard to get, and easy to cure.  Unfortunately, experience over decades is proving that wrong, but the medical authorities are slow to change.

I have included names of some of the Lyme-oriented organizations that may be able to help you find a knowledgeable physician.  While it seems that these physicians are few, they often are simply hiding in plain sight.

Best wishes to you, and do let us know how it goes --

[lucylo92]

Thanks Jackie!

Not sure if anyone will be able to help much as I'm from Manchester in the UK. It's a struggle searching online for a lyme specialist over here. Is it possible for the symptoms to be due to my immune system over reacting from the doxycycline which I finished 2 weeks ago or is that something the docs like to assume?

[JackieCalifornia]

Infectious disease MDs would, in a perfect world, be the docs leading the charge against Lyme and its co-infections, but as a group, they are stuck on old-think about Lyme that (1) it is rare, hard to get, and easy to cure with a couple weeks of doxycycline, and (2) any continued problems are just your "over-active" immune system attacking a now-gone infection after taking doxy.  

Getting this doc to change his mind is probably not going to happen, so I would find a new doc, preferably an ILADS member doc, but even that is not foolproof.

I totally agree with all your comments above.  Let us know how we can help.  I don't see your geographic area in your short bio, but if you post your general area ("near Topeka KS" or wherever) we might be able to give some ideas.  

(Note to everyone:  We do NOT put Lyme doc names in public here, to keep cranky medical boards from harassing the Lyme docs.  Please be discrete.)

[lucylo92]

Oops didn't mean to post that yet.

But anyway my doctor basically got in touch with the infectious disease department at a local hospital (I thought he knew a lyme doc but obviously not).

He then went on to say that I should leave it another 1-2 weeks and if I still feel the same then go back, I told him this didn't reassure me so he said just give it a week. Then asked if the symptoms like headaches and tiredness and normal for me so I said no they aren't I never get headaches so it went down to come back in a couple of days if it's still the same and even if I was to have blood tests done and they came back positive they wouldn't do anything about it yet as it's too early apparently which is ridiculous. The earlier you treat it the better right?  

So I left knowing nothing new.

Phoned him back this morning having had a think about it overnight and told him I just want bloods doing, more for piece of mind so I know if I do still have lyme or not and got booked in for Thurs 6th August so just going to wait and see now. He said this morning that if still no improvement in a few days then go to the infectious disease department and see someone there, does anything think this is worth it? Do they know much about lyme? Getting so frustrating now and it keeps making me question myself as to whether half of it is in my head and I'm fine but at the same time I know I'm not my normal self.

[lucylo92]

Okay so I finally got back to my doctor  yesterday to tell him I was still feeling rubbish and getting the symptoms.

[JackieCalifornia]

That's a good question ... unfortunately it's not one I know much about -- I used to get killer hangovers even pre-Lyme, and I eventually realized that I just don't metabolize/break down alcohol well, so I stopped drinking for the most part.  (When work is really tense, I will sometimes take a little bit of something alcoholic in the evening, but not often and not much.)

If you don't feel good after drinking alcohol, then take a break from it.  Lyme messes with many bodily symptoms, and rather than play Lyme's games, just say no, as the commercial says.  :)  When you are well again, you could try it again.

[lucylo92]

Thank you for you quick response and the information Jackie. I think I am definitely going to pay another visit to my doc this week and get him to contact the lyme specialist as he knows of a local one.

One other question I have now is related to alcohol. I was at a family 50th party last night and after half of my first drink I started to feel a little drunk and sickly like my stomach was clenching in a way which made me feel like I didn't want to drink more and as the night went on i felt very achy in my legs (could be to do with standing up for most of the evening though) and I suddenly got joint pains in my left knee which I still have now. I powered through and ended up having a few (4) drinks over the course of the night but for me that isn't normal. For what I was drinking I could normally have about 6 drinks and then start to feel a little tipsy and carry on to have many more!

I'm obviously not on the antibiotics anymore but have just been researching online and seen articles about alcohol and Lyme not mixing well and it should be avoided. Do you or anyone know much about this?

Will let you know how things go, thank you.

[mojogal]

The latest thought is 3-4 weeks of Doxy if it is a recent bite. If it were me I would take it even longer. There was a study done that the co-infections can also come from that first bite. Those require different medicine.

I would first concentrate on getting more doxy along with a cyst buster since Lyme hides from its enemies (the antibiotic) comes into cystic form which doxy can't get to. Most Doctors have you take flagyl or tindamax to kill the cyst for me and Doctors can pulse those.

It's a lot of info, let us know if you have questions. Good luck.

[JackieCalifornia]

Welcome to MedHelp Lyme --

Do call your doc's nightline or phone service and leave a detailed message about your current symptoms.  Your description of the rash sounds like it could be Lyme, and the sooner you get rid of it, the better.  

The doxycycline your doc gave you is the right thing to do, so I read, as long as it's the very early stages of a possible Lyme infection.  Unfortunately, the Lyme ticks also often carry other infections that doxy does not take care of, so given your other symptoms, I would definitely see a Lyme specialist.  

Don't put it off to see if you get better -- the sooner Lyme and any other infections the 'Lyme' tick may have given you need attention as soon as possible.  If your current doc doesn't know much about Lyme, then he might send you to an infectious disease doc, who unfortunately often don't don't know much about Lyme.  It's better to go to a Lyme specialist, in my experience, and if you go to the ILADS website (short for International Lyme and Associated Diseases Society), there is a referral function to help you find a Lyme specialist near you.

Let us know what you do and how it goes, okay?  Take care!