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Avatar universal

More anxiety

Hi, I was diagnosed by my doctor as having lymes based on the red mark I had, being in tick/lymes known areas of the uk, having severe night sweats I also had some bad anxiety/worried/nervous guilty feelings all from nowhere. I was tested for the main strain which came back negative, but the doc did day there where many strains which the nhs didn't test for. I was on antibiotics for 2 weeks. The sweats cleared up but the anxiety remains, it picks on things for me to worry about and cycle thru my mind. I used to shrug away most issues etc but this is sticking. Could the anxiety still be the lymes? I have no other symptoms but this kind of OCD anxiety. I have been back to docs they suggested cognitive book to help with anxiety. I also saw a hypno, but the feelings remain no matter how I attempt to channel my mind. The therapies put a positive frame of mind on it, but underneath its still present any help it similar problems. Ps I'm from the uk I know our strains differ from US
23 Responses
1763947 tn?1334058919
I just got out of the hospital and still weak. Others will give you more details but you need more than 2 weeks of treatment for Lyme and anxiety is a big part of a co-infection, called Bartonella where you get red rashes.
ILADS dot org is our association. You may want to go there and read many articles. My brain fog doesn't let me recall if they have contacts in UK or you can google UK Lyme disease.
Good luck and keep us posted.
Avatar universal
Welcome to MedHelp --

We have several posters here who are in the UK, and if you do a little searching around the site (see to the right of your screen, in the right hand column, a skinny box called 'Search this Community', where you can put in various searches like UK, or England, or whatever you think might be likely to show up in a post from your area.  That will help you find some connections there.

Anxiety is a common symptom of Lyme and/or other diseases the Lyme ticks often carry.  What makes it worse, of course, if having MDs tell you it's all in your head.  No, it's a physical effect of a Lyme infection.

Your doc was wise to know that there are different strains, and the tests indeed do not pick up all of them.  Too many docs in the US and the UK and elsewhere tend to rely on the (very imperfect) tests as the last word, and then slap a diagnosis like 'anxiety' on many of us.  The key is to find an MD who understands that Lyme is tricky, and does not manifest the same in everyone.

Also there is the fact that ~half of the Lyme ticks carry other diseases that need separate testing and separate treatment from Lyme:  some of them are babesiosis, bartonella and ehrlichiosis.  

The most important thing you can do is find an MD who understands Lyme.  You will see the label 'LLMD', which is not a credential or a title, but is patient slang for a 'Lyme-literate MD', meaning one who thinks broader thoughts than your recent MDs -- except for the one who was wise enough to tell you that the test is not (-- should not be --) the final word.

Many of us never get the rash you had, so you have a good data point there.  Lyme should be a *clinical* diagnosis, based on patient history and symptoms, aided by tests, but unfortunately modern medicine has become so enamored of test tubes that the docs forget that their judgment should come into play, esp. in a developing area of medicine like Lyme.

Do search around this site for links to UK Lyme organizations and also on the web generally, tho it's a bit tricky not to come up with a whole page of links to Lyme Regis etc.

If you are coming up dry without any useful links, let us know, but first try the search box on this site, since I know we've had quite a few visitors here from the UK.

And remember:  Anxiety is a symptom of Lyme.  Full stop.  That plus your history of a rash should get you further testing and treatment.  Let us know how you do, okay?  Best wishes -- and remember, you are not alone in this.
Avatar universal
Thanks so much for your help! I may have been lucky with my doc he was very good actually. I actually suggested lymes after finally putting 2 and 2 together ie rash and sweats, he agreed. He had delt with it before as he worked in South Africa quite a while, as I say he was good. He contacted other gp about it and did research himself and backed my corner for further tests but nhs said no. I had 2 weeks on doxycycline as per the norm. Thing is now I don't know wether the anxiety is due to worry that I may still have lymes, worry that I actually never had it and that this anxiety has been brought on by just external factors. But now it's here it's hard to remember before, I have caught myself confusing tiredness, hunger, even food craving on anxiety. Each time it happens it makes me worry about an issue from long ago that prior to this actually didn't bother me! It just sat at the back of my mind forgotten! Thanks for your help. Think ill see my doc again about this as he did really go above and beyond
Avatar universal
So glad your doc is supportive!  Two weeks is unlikely to finish off all the bacteria. There are probably a few hardy survivors hanging in there.  

Do whatever you can to get another few weeks worth. An LLMD I know in Australia (where they have found European variations of Borrelia) says four weeks for a tick bite, six weeks for a rash, more if time has passed.  If your doctor will prescribe more doxy, just pay for it yourself if the NHS won't do it.  It is not worth getting late stage Lyme and several weeks of doxy is a fraction of the cost of IV meds for long term treatment.

Unexplained anxiety is indeed a symptom of Lyme. I had it, too.
Avatar universal
Hiya, English here.
The NHS tests are terribly hit and miss, but most people do want a positive blood test before embarking on months of antibiotics, which sadly is what you need to cure lyme.
Some people in the UK go to the Breakspear hospital, but they are not much god now as their good doctors have left over the last few years. By far and away the best testing lab is in Germany (naturally!) called Infectolab with a .de website
You can have your blood couriered over to them, they can test it if they get it up to 48 hours later (which they will with TNT)
If you need a lyme specialist doctor, the best in Europe is also in Germany, what a surprise, at the BCA (www . b-c-a . de)

With the anxiety you describe I think there's a good chance you have bartonella. It's a common tick-borne co infection. It's really common in the UK but most of our strains are ones that cannot be lab tested (there are lab tests for only 2 strains, the other 14 cannot be tested). So it's up to you if you spend the money getting tested for that too, a good doc will treat on the basis of symptoms alone.

It sounds as if you have a GP who is far more on the ball than most in the UK, but, if he only gave you antibiotics for 2 weeks, he may actually be a twit. 2 months is the rock bottom bare minimum to have any hope of curing lyme disease, I'm afraid!

Avatar universal
Hi youcegottobekidding! Nice to hear a familiar accent! The thing is now apart from anxiety I have no other symptoms, is that normal? If the bacteria was still in there would I not feel rough and or have the previous night sweats again? This is my dilemma. I don't know wether I've just created my own little nightmare or it stems from something! Yes doc mentioned to me the Germany testing, but if like u say one that can't be tested easily or at all then I'm not sure it's worth it? Also the 2 months minimum doxy, where did that come from cos it's really hard to find out about dosage some places 2 weeks some four some IV for a month. I e had anxiety for 10 months, rash developed a while after late August 2011 a fair time after any noticed ticks ( had 8 hanging on me!) but then I was in the same woods in January too didn't notice bites then thou. All your info is very helpful. I may print it off emit the twit part and show my doc!!
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