Aa
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
I'll take it as a good sign of our resilience that we can crack jokes about the plague. :) Yeow!
:). And the plague was actually spread by fleas on the rats that travelled on ships! Yet another miserable insect borne disease.
Oh, wait. I'm wrong.
It actually DIDN'T work well in the Middle Ages: that Black Plague thing kind of got around without too much difficulty
It actually DIDN'T work well in the Middle Ages: that Black Plague thing kind of got around without too much difficulty
and PS, about breaking open the cysts that Lyme bacteria create for themselves:
My doc used not herbs, but Flagyl (generic: metronidazole) for that purpose -- he's not much of an herbal kind of guy. Flagyl worked well for me, paired with the antibiotic that does the actual killing of the Lyme bacteria after Flagyl kicks down the door.
I think there are other meds that work the same way.
My doc used not herbs, but Flagyl (generic: metronidazole) for that purpose -- he's not much of an herbal kind of guy. Flagyl worked well for me, paired with the antibiotic that does the actual killing of the Lyme bacteria after Flagyl kicks down the door.
I think there are other meds that work the same way.
It's so quaint when the scientific types swear that some bug can't even possibly be in X country. That worked pretty well before ... say, boats and airplanes were invented and people mostly were born and died in the same village. You know, like in the Middle Ages.
Sheesh.
Sheesh.
Thanks! Good to know. When I was looking for info on Ehrlichia in England, I didn't find much. One medical website said it was limited to the mainland. I couldn't find any that definitively said it was in England. I will have to go back and find that website again.
Glad the vit B info is useful to you - it was certainly a major revelation to me!
BTW Rico, we do have Erlichia in England. I have it (had it). According to my doc it goes with 2 months of abx.
BTW Rico, we do have Erlichia in England. I have it (had it). According to my doc it goes with 2 months of abx.
I didn't know low Vit B can cause anxiety too. . Having first Bart's, I just thought that caused it. Then with Babs too it increased.
Good info. Thanks very much!
Good info. Thanks very much!
Thanks for mentioning the part about low Vit B contributing to anxiety. I didn't know that.
I felt a reduction in fatigue and brain fog with methyl-B12 shots so I obviously had a shortage. But what is most striking to me is that before my chronic symptoms started, I had a couple rounds of fear and anxiety that my DH was going to die. He travels on business often, and these episodes would last a couple weeks or more as he came and went on his usual trips. I just had this sense of foreboding and doom. I was sure there was going to be a plane crash or something. It didn't occur to me until I read your comment that these could have been symptoms! (I didn't know I had Lyme or Bart when I had these episodes.)
Yet another Ah ha! moment. It is good to know I haven't develop some psychic sense of future disasters! :)
I felt a reduction in fatigue and brain fog with methyl-B12 shots so I obviously had a shortage. But what is most striking to me is that before my chronic symptoms started, I had a couple rounds of fear and anxiety that my DH was going to die. He travels on business often, and these episodes would last a couple weeks or more as he came and went on his usual trips. I just had this sense of foreboding and doom. I was sure there was going to be a plane crash or something. It didn't occur to me until I read your comment that these could have been symptoms! (I didn't know I had Lyme or Bart when I had these episodes.)
Yet another Ah ha! moment. It is good to know I haven't develop some psychic sense of future disasters! :)
As I read the thread, I also encourage you to consider Bartonella and Babesia. Bartonella causes anxiety (which was my primary Bart symptom) and Babesia causes night sweats and interferes with antibiotic treatment for Lyme. When a Lyme patient is not getting better as expected, LLMDs consider Babesia.
Both are likely to test false negative, which is why you need a knowledgeable doc to consider a clinical diagnosis, if appropriate.
I haven't found an absolutely authoritative source, but I believe that Ehrlichia in Europe is limited to the mainland. I don't think it is in England.
Both are likely to test false negative, which is why you need a knowledgeable doc to consider a clinical diagnosis, if appropriate.
I haven't found an absolutely authoritative source, but I believe that Ehrlichia in Europe is limited to the mainland. I don't think it is in England.
Yes, I'd delete the twit part if you show my message to the doctor!
If all your have is anxiety and nothing else, 3 things could have happened.
The lyme bacteria could have gone into hiding inside you. They form "cysts" which mean they are dormant and hiding but sooner or later will emerge again. Some antibiotics make them do this, you need the right mix plus something that bursts the cysts, usually a herb called artemisia.
Doxycycline alone will make them go into hiding but not die. It doesn't reach such a high concentration in the brain, where your anxiety is stemming from, and so the potential scenario could be that the bacteria are dormant in your body and still active only in the brain.
OR, you could have a vitamin B deficiency. Lyme will do this, but usually it takes a while as far as I know. Vit B deficiencies can give you ludicrous anxiety. I used to think my husband was going to die every time he stepped out of the house without me. It was a bit silly I lived like this for a year then became normal with a vitamin B complex tablet!
OR, you could have streptococcus. This usually causes a sore throat - have you had one recently? - and can occasionally get into the brain (very few bacteria can, but lyme and strep can) and once in there, it can become chronic and causes OCD or various anxiety disorders. It can cause major, fairly loopy forms of OCD in some unlucky people. You need antibiotics for it but I don't know anything about which ones. I would do some reading up about this because if you have no other symptoms, I do think it could be possible.
I do think the firest scenario is thne most likely one though, given you've had that rash.
If all your have is anxiety and nothing else, 3 things could have happened.
The lyme bacteria could have gone into hiding inside you. They form "cysts" which mean they are dormant and hiding but sooner or later will emerge again. Some antibiotics make them do this, you need the right mix plus something that bursts the cysts, usually a herb called artemisia.
Doxycycline alone will make them go into hiding but not die. It doesn't reach such a high concentration in the brain, where your anxiety is stemming from, and so the potential scenario could be that the bacteria are dormant in your body and still active only in the brain.
OR, you could have a vitamin B deficiency. Lyme will do this, but usually it takes a while as far as I know. Vit B deficiencies can give you ludicrous anxiety. I used to think my husband was going to die every time he stepped out of the house without me. It was a bit silly I lived like this for a year then became normal with a vitamin B complex tablet!
OR, you could have streptococcus. This usually causes a sore throat - have you had one recently? - and can occasionally get into the brain (very few bacteria can, but lyme and strep can) and once in there, it can become chronic and causes OCD or various anxiety disorders. It can cause major, fairly loopy forms of OCD in some unlucky people. You need antibiotics for it but I don't know anything about which ones. I would do some reading up about this because if you have no other symptoms, I do think it could be possible.
I do think the firest scenario is thne most likely one though, given you've had that rash.
Lyme is in the same cursed family as syphilis, with tiny little spirochetal shapes that burrow into tissue with low blood flow, and so evade the immune system. Treatment is strongly advised, and the main disagreement is over how long to treat and with what medications.
Doxy is the traditional med, but is useful only immediately after infection ... the problem being that many of us do not know when we were infected, because ~half of us never see a tick and never have a rash. There are few hard and fast facts re Lyme, because it is a developing field about which much is still being discovered. It is an extremely complex bug, and those who work in the field become ever more impressed with its nastiness.
There are no hard and fast rules, and the only rules of thumb are:
-- test for Lyme, but know that there are many false negative results, so go on history and symptoms
-- based on symptoms, test also for co-infections such as babesia, bartonella and ehrlichia, but know that these may not show themselves until later in treatment. Because established Lyme is a fairly long treatment, any coinfections are sometimes treated first to clear the decks, but not always, depending on the combo of infections
-- in difficult cases, IV is more common. I was lucky and treated only with orals, but what matters is what gets you well, not what form it comes in.
-- it is often impossible to know when we were infected, because the ticks are so minute, and sometimes (I think) it may take several re-infections w/ Lyme and/or co-infections for the immune system to finally falter, so much may be hidden, just as you said you had ticks hanging all over you, etc. Some docs act like we each have one chance to be bitten, and that's it --- when in reality, it's more like the common cold: lots of opportunities over time to be infected by a variety of bacteria.
-------
ILADS [dot] org is the website for Intl Lyme and Associated Diseases Society, the main voluntary group for Lyme docs, who may be of any discipline or none: internist, GP, infectious disease doc, rheumatologist, etc. Rule of thumb is that the specialists are less understanding of Lyme, because the specialists tend to burrow into their specialties and do not appreciate the protean effects of Lyme. Infectious disease (ID) docs and rheumatologists are often the biggest and loudest Lyme-deniers. It all depends on the individual doc and how open-minded s/he is.
When you feel up to dipping into the ILADS website, do so ... it is quite accessible, if a bit disorganized in some ways ... as befits a disease in chaos.
But remember: the battle is worthwhile, however tiresome along the way..
Doxy is the traditional med, but is useful only immediately after infection ... the problem being that many of us do not know when we were infected, because ~half of us never see a tick and never have a rash. There are few hard and fast facts re Lyme, because it is a developing field about which much is still being discovered. It is an extremely complex bug, and those who work in the field become ever more impressed with its nastiness.
There are no hard and fast rules, and the only rules of thumb are:
-- test for Lyme, but know that there are many false negative results, so go on history and symptoms
-- based on symptoms, test also for co-infections such as babesia, bartonella and ehrlichia, but know that these may not show themselves until later in treatment. Because established Lyme is a fairly long treatment, any coinfections are sometimes treated first to clear the decks, but not always, depending on the combo of infections
-- in difficult cases, IV is more common. I was lucky and treated only with orals, but what matters is what gets you well, not what form it comes in.
-- it is often impossible to know when we were infected, because the ticks are so minute, and sometimes (I think) it may take several re-infections w/ Lyme and/or co-infections for the immune system to finally falter, so much may be hidden, just as you said you had ticks hanging all over you, etc. Some docs act like we each have one chance to be bitten, and that's it --- when in reality, it's more like the common cold: lots of opportunities over time to be infected by a variety of bacteria.
-------
ILADS [dot] org is the website for Intl Lyme and Associated Diseases Society, the main voluntary group for Lyme docs, who may be of any discipline or none: internist, GP, infectious disease doc, rheumatologist, etc. Rule of thumb is that the specialists are less understanding of Lyme, because the specialists tend to burrow into their specialties and do not appreciate the protean effects of Lyme. Infectious disease (ID) docs and rheumatologists are often the biggest and loudest Lyme-deniers. It all depends on the individual doc and how open-minded s/he is.
When you feel up to dipping into the ILADS website, do so ... it is quite accessible, if a bit disorganized in some ways ... as befits a disease in chaos.
But remember: the battle is worthwhile, however tiresome along the way..
The thing is, it could all come back. That often happens with not long enough treatment.
Also to add, things that used to make me anxious ie flying etc are exaggerated now, but the flip side is the anxiety and or negative thoughts are not constant. Daily yes but at varying levels
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!!
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!
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!
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.
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.
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
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.
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.
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.
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.
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