Lyme Disease (Borreliosis) Anyone have experience of it?

[nickguzzi]

For anyone concerned ie anyone walking out in "the country", if its an area known for tick activity (they particularly like deer) they either fall down from trees or shrubs or jump up from longs grass, bracken, heather and the like.   Once on you they typically then migrate to a warm and moist place, particularly groin and armpit etc. 

Primary protection is obviously best, covered up, socks over long trousers, no exposed shoulders and the like.  Don't forget your head.  Breeks and long socks anyone?

Second - replelant.  My sister (been at most places my infected BiL has) swears by Autan Mozzie & Tick spray.  I have used it and been covered by mozzies in the Kuhkopf.  Find and use the most effective you can.  Locally sourced products may be more effective than ones bought here, as there the infection risk is higher and they may use stronger stuff.   I don't risk using last years - there may just be something that degrades (don't know - citation needed!)

Third level is to have some tick tweesers.  Don't just yank 'em out with your fingers as you will leave their mouth parts in your bits and get infected.  Use the correct pliers.

Fourth, always check yourself all over as soon as possible after potential exposure.  You and a n other in the shower is good - you can do each other. All the bits you can't see or properly reach, all the folds, flappy bits and wrinkles. Choose your walking buddy with care.

Fifth, should you start having flu like symptoms within a week or two, then straight off to the doc, explain with emphasis your situation and concerns.

Not every tick is a carrier.  Some just want your blood.

This is my regime.  I sort of devloped it after hearing about ticks and feeling a bit sick and revolted.  My BiL wanders about, in shorts and t shirt, though all sorts of woodland and scrub and has Lyme's.  I take precautions and don't.

 

I am now more than a bit cautious about walking in Germany.  There is quite an increase in tick activity, blamed as most things there on Global Warming.   With more ticks carrying. 

Added to the increase in mammals with rabies - Tollwut  - a sign to look out for and be afraid, be very afraid.  Do not pass these signs.

The last 20 years or so, there has been a policy of non intervention, particularly in woodland, apart from keeping paths open, the rest is left au naturel.  To decay and fester.  They are promoting a return of wildlife.  So they have lots of deer and wildboar.  Ticks come free.  

Looks like this is also a problem here in the wilder places with larger mammals.

 

Its isn't fatal but can be debilitating, and can open the door to secondary complications.

I hope Fubar is starting to get on top of his malady, perhaps his misfortune will be a warning to others.

[FUBAR]

Felt shocking yesterday, weak and a killer headache and shoulder pain in the ball joint. Went to doc's asked if I wanted off until Monday said I was pretty busy and didn't feel too ill to work so no ta, got some tablets and carried on (tablets due to be started in the evening. Got worst rapidly later on lost all feeling and control of my left hand and forearm, left side of face went numb, nauseous, left hand came back right one went, vision went bad couldnt focus properly on things (I could see everything but my brain wasn't able to work out what it was and took ages to adjust sight to anything). Back to doc's and collapsed in the place could bearly move any part of my body and breathing was a physical challenge. Ambulance and off to A&E time, in hospital for 3 or 4 hours lots of tests and LOTS of different specialists came and inspected me. Final conclusion nothing wrong with you good bye! Everything is covered by the symptoms of Lyme disease even the shoulder pain I had been having, the were aware of my blood tests as they had been carried out there and they all mentioned it and looked at the now faded marks where I was bitten. 

 

 

WHAT A DAY! Back home about 5pm into bed and I am just up and still drained. I have no accepted my sick note though  

[domhnall]

flipping heck! Second opinion time?

[FUBAR]

flipping heck! Second opinion time?

 

They checked liver, kidney function etc etc and all was good. They were aware of the Lyme disease but having read a lot over last few months now on the subject especially peoples experiences, even here and all over Germany people have problems getting it addressed. There are some of the best specialists but few others who take notice. This was my fear for the UK more so than here. They did recognise that I have Lyme disease but were more commenting that it was not anything else. I have new antibiotics from my GP to start now too but they require me to stand upright and drink LOTS of water for 30 min after taking so they don't get stuck anywhere which apparently would be bad! lol That will be fun, don't fancy standing for 5 seconds let alone 30 min! 

[Ootohere]

Re Ticks and out and about in the countryside & taking care.

 

I have seen ticks in the Showers of hotels and hostels in Scotland. (where people have put wet clothing possibly.)

& at one 5 star Country Hotel with golf courses that allows guests with dogs to stay in the Lodges

there were fleas in the one i got a move from.

 

george

[loskie]

Taken from the Scottish Government Website:

 

For information on the manifestation of tick-borne diseases in people, please check the Borreliosis and Associated Diseases Awareness UK (BADA UK) website at www.bada-uk.org.

 

I think you would not just be bitten by a tick and it drop of instantaneously. In my experience once it is attached it will not let go till you find it and remove it (carefully) it will keep attached for several days if not found.

Are you sure this is not a mis diagnosis?

 

Hope all ends well.

[Ootohere]

I have seen people and animals that discovered ticks that have been there for a fair amount of time due to how full they are.

 

& seen Ticks that have dropped off when full.

So they had feed on something or someone.

 

george

[nickguzzi]

That's not so good, Fubar.

My experience with medics in Germany is very positive.  Plus they are often prepared to try new or emerging proceedures, having less cost constraints than the NHS.

If my understanding is correct, there are far more doctors, and the organisation is very different.  You can go see who you please, when you like.  As long as your insurance covers it.

When I lived there, if I went with a sore throat for example, the doc would have a look, if necessary ring an ENT doc, make an appointment for there and then and off I would go.  Seen, examined, tested, diagnosed and treated in an hour.  Back at work soonest.  Minimum disruption to the Wirtschaft!

My German neurologist had done three doctrates.  After setting up her own consultancy, she then went on to take a law degree and now heads up an ethics committee in Switzerland.   This is apparently pretty common, the dedication to continuing training and updating of skills to this extent is taken as part of the job, which is possible because they are not mega stressed with vast workloads.

[swedishskoda]

Sorry to hear about your plight. I've been infected a few times, but only had the early symptoms (the bull's eye mark) and ten days on penicillin (phenoxymethylpenicillin) have always done the trick.

 

There is a small risk that symptoms prevail, often called 'chronic borreliosis' or Post-Treatment Lyme Disease Syndrome, with the symptoms you describe (fatigue, joint illness and so on) but it is rare. Problem is that the symptoms are not specific but the same as for other diagnoses of a lot of 'difficult' diseases, such as fibromyalgia &c. And among specialists there is an ongoing discussion whether some doctors just pick the diagnosis more or less randomly, and then suggest expensive, long-term treatment in their own private clinics. There's a number of them in Germany. And be careful when you google. There's a lot of people who support that kind of treatment without giving any convincing scientific arguments.

 

A second opinion is never wrong. For confirmation, more than one blood test is needed. 'Post-Lyme Disease' (symptoms that prevail after a penicillin treatment that apparently was successful, i.e. nothing found in new blood tests) will often go away on its own, but it can take time. Further penicillin treatment does not help. See http://www.cdc.gov/lyme/postLDS/

 

The most troublesome form, neuroborreliosis, cannot be diagnosed without a spinal tap.

 

Hope you'll find a way out.

[FUBAR]

Yea I am to get further blood tests had 2 already positive though :( 

 

Thought I would add some pics of my bites, These were taken a few weeks or more after the bites and they had settled from really big red itchy sods with a large outer ring around them. But I didn't take any before then. 

 

[FUBAR]

Weak, join pains, headaches, flu like symptoms and now new blood tests back showing no response to treatment so far. Have to leave it for another 6 months and get more blood tests to see if it's changed then and im magically better. In the mean time I must be tested for all manor of other conditions to rule them out as causes for my symptoms. Not a good day to be stuck in the office now sifting through paperwork.

[Brimma]

Hope they get to the bottom of it soon :(

[FUBAR]

Hope they get to the bottom of it soon :(

 

Well this seems to be the thing, they know what it is, how I got it etc. But this is where Lyme Disease seems to fall flat on it's face within medical circles, treatment! Dr Google is most insightful as are forums with people sharing their experiences with timelines etc. Part of the reason why I resigned was this looming over me. Like when I was taken into hospital in an ambulance each specialist passed on about the Lyme Disease to each other but no one would attribute why I had collapsed and could barely move to that, despite every symptom being typical to it and more or less kicked me out. 

[VWD]

Only experience of tick problems I've had was with a very large Rotie cross GS in Africa. It was tick country - and in those days there was little protection. For dogs it was sheepdip .There were shampoos, but they offered limited protection . The Rottie/GS came down with tick problems and got a shot of anti tick and recommendation was feed him bonemeal ( from butchers bone saw ) along with his food. The tick attack had depleted his red cell count.

[mellyboy]

I returned from a extended caravan trip in Spain and had a issue with a sore lump at the top of my left " buttock " , went to Doctors who said it was a live tick , first one she had removed, checked with practice nurse who said to grip it securely and turn it anti clock wise   it will be  quite hard to remove as its form of teeth will be embedded in my flesh and have to be broken, no mention of it dropping off. My female Doctor went to work and was delighted when she removed it alive and legs kicking, it was killed by putting it in a envelope and standing on it . Gave me a print out on Lyme's disease and some Anti Biotic cream and all was well with no sign of Lyme's . Will be  more aware of ticks this summer , do not want another one setting up home in my "butocks"  

[meta55b]

Being a mountain biker as like many on here. Some of the guys and girls I cycle with can pick up 4/5 ticks every summer.

[FUBAR]

Being a mountain biker as like many on here. Some of the guys and girls I cycle with can pick up 4/5 ticks every summer.

 

The big drama folk seem to have is it can take years typically before it becomes debilitating in that sense and often confused for MS or Parkinson's or just "all in your head" as without being specifically looked for won't flag up on other tests. Not everyone shows the classic bulls eye rash etc. Worth while for people to be aware of Lyme and it's symptoms just in case it ever crops up. 

[FUBAR]

Right ongoing from this I live day to day at about 60% of the energy I had a year ago while I was recovering from last operation on my leg, muscle pain, joint pain, weakness and a big list of little annoying things (feel like im 90)  and having moved back to the UK, had to start all over again with NHS. 

 

I registered with GP and had an appointment went over what had been going on and a letter from my old doctor showing my blood test results which hadn't been fully disclosed to me that my levels had been going up. I was told nothing of the sort! I am quite concerned going to the NHS for this due to their reputation in handling or even recognising it's existence and utterly poor testing, giving a high count of false negatives. My GP was receptive and aware he said that there are 2 other cases in the county at the moment and that another blood test was due as per my old doctors letter so had some nice nurse sort that out. He also said he knows relatively little about it all so upon receiving my results back will have to consult with someone else for advice. That reassured me and I was pleased to hear it. 

 

Then today a few weeks after my blood taken (only 1 lab in UK to test it), I get a call telling me the doctor needs me to come in for another blood test tomorrow first thing and that I must now fast for it! I asked to see if the admin lady knew anything more but no. That has really brightened up my day and with precision timing also! When phone rang I was just walking back to the sofa with a pizza fresh out of the oven and starving to be told, "put t down fat boy" ...........  :wonder:

 

But wtf is up with not giving me an explanation while waiting for results and a consultation, not even it's routine or nothing to worry about.

 

Anyways back to the TV!!!!!! I shall substitute food for Guinness and whiskEy perhaps

[littleade]

Sometimes the NHS makes little sense. I had a similar 'we need more blood from you urgently' call but for much more mundane tests earlier this year so proably best not to read too much into it at this stage Fubar.

 

Are they consulting either Univercity college London or liverpool school of tropical medicine?

 

Keep your spirits up

 

Ade

[FUBAR]

Sometimes the NHS makes little sense. I had a similar 'we need more blood from you urgently' call but for much more mundane tests earlier this year so proably best not to read too much into it at this stage Fubar.

 

Are they consulting either Univercity college London or liverpool school of tropical medicine?

 

Keep your spirits up

 

Ade

 

Cheers Ade, no idea also waiting to be told if my leg has healed satisfactorily from the bone graft they did on my Tibia over a year ago. Over 6 months from first x-ray that no one ever managed to look at, which I did chase a lot (normally amazing private hospital in Holland). NHS had another crack at it assuming doctor will just wait to cover both at once, when he sees me again. Thing being I know it will be weeks before I hear back again now as I will be in tomorrow to see a nurse not my doctor. 

[FUBAR]

Oh my life! What a morning.

 

I have fasted....... I go in time for my appointment (8 min early) and ended up in a que to book in for 25 min with all of 1 person in front of me. I get to front of que and they had no record of my appointment at all....... At this point my doctor walks out by chance and sees me, he was surprised to see me as he had that very second just been trying to call me (phone off when in there). He takes me into his surgery and there is no request for bloods and no appointments or notes on system for me. Basically from what I assume it was my old doctors office that must have called me to make appointment in error and I assumed it was my new one.

 

Any ways doctor said he was calling about my results left a message that he would call me later. The results came back 'positive', the end. It would seem as I was concerned the NHS testing method which is widely criticised on this specific disease is some what lower than that used elsewhere and doesn't provide a titre level to measure the level of infection. Having sought advice from a specialist he went over what I had been prescribed by my previous doctor and from their point of view that's that. My previous doctor wrote a letter which they have outlining the fact and treatment briefly with the request that I have more blood tests as I just have to observe the change in my levels and treat accordingly. This does not appear to be the method adopted in the UK. I went over symptoms past and present and with the best of efforts using the NHS sites advice is referring me to a specialist to see what the score is with them.

 

Following this, I will have to decide if I will need to self fund private treatment in England...... I really hope not as that will be a crazily expensive way to have to go about things. Fingers crossed.  

[nickguzzi]

Feel for you Fubar. Despite being a supporter of medical care free at the point of delivery, the way the NHS is being run currently is abysmal.

Hope some thing turns up, as the families' experience with private medicine in the UK is if anything worse - I think you should see my colleague.... kerrching! yet another £300 for a simple problem.

Any chance of using your Dutch doctor? Travel may not be cheap, but you only get to see the same people here and with the same mindset.

[FUBAR]

Feel for you Fubar. Despite being a supporter of medical care free at the point of delivery, the way the NHS is being run currently is abysmal.

Hope some thing turns up, as the families' experience with private medicine in the UK is if anything worse - I think you should see my colleague.... kerrching! yet another £300 for a simple problem.

Any chance of using your Dutch doctor? Travel may not be cheap, but you only get to see the same people here and with the same mindset.

 

He no longer works there and ironically was a German agency GP working in NL. But the entire health care system in NL is private (mainly work based insurance like USA or pay the bill). They just have a different approach to Lyme Disease. I do find it shocking that the NHS approach to a positive result is a week of antibiotics then that's you all is well. Without the ability to read the levels of severity of it, just sounds like madness. The bigger potential problems of this are fairly massive and happen years down the line due to lack of treatment. I had a double infection at the same time, does this make the fact I was given the wrong medication initially then the correct one months later a sure thing that it 'should' sort it self out? Bahhhhhh, my next step if not satisfied would be just to pay for a private consultation with one of the handful of doctors in the UK who actually treat this. Some people in the UK pay to have their blood sent to Germany to be tested properly....... Wonder how much it costs to 24 hour blood across international borders, bet there is some paperwork and silly fees for certificates to pay. 

[Clunkclick]

You've undoubtedly got yourself sorted by now, But for what its worth, find the following.

 

Extract from the Oxford Handbook of Clinical medicine (8th Edition, 2010, page 430):-

 

"Lyme Disease is a tick borne infection caused by Borrelia burgdorferi.

 

Signs:=< 75% remember tick bite. The lst sign  is usually erythema migrans, a circular rash occurring in ~80% , which begins at the site of the tick bite after 3-30 days.

It gradually expands, reaching up to 30cm across. Its centre may be clear as it enlarges (Bulls-eye appearance) .

 

Also: fatigue, chills, fever, headache, muscle and joint pain, lymphadenopathy, myocarditis; heart block; meningitis; ataxia;amnesia;cranial nerve palsies;neuropathy;lymphocytic meningor adiculitis (Bannwarth's syndrome).

 

Diagnosis:is based on symptyoms, physical findings and a history of exposure to infected ticks.

 

Lab tests are not needed in the presence of erythema migrans.

 

Px:Skin rash:doxycycline 100mg/12hour PO (By mouth) (amoxicillin or penicillin v if  < 8 yrs or pregnant) for 14-21 days.

 

Later Complications : High dose IV benzylpenicillin, ceftriaoxone.

 

Prevention: Keep limbs covered; use insect repellent;tick collars for pets;check skin often when in risky areas.

Vacinnation available e.g. if living in high risk areas.

Advice differs on prophylaxis after a tick bite. A single dose of doxycycline 200mg PO given within 72 hours of  bite is effective prophylaxis; in highly endemic areas, this may be worthwhile (e.g. if risk > 1%).

 

Removing ticks: Use fine (Tick removing) tweezers to grasp the tick very close to your skin. With a steady motion, pull the tick's body away;clean with soap and water. Don't worry if the tick's mouthpart remains in the skin - they won't transmit Lyme Disease.

 

Skin complications: Acrodermatitis chronica atrophicans (ACA, skins is as "Thin as a cigarette paper");

 

                                Borrelia lymphocytoma manifests as blue/red discolouration of ear lobe."

 

 

- I wonder whether applying surgical spirit/witch hazel or ortho type freezer spray might help release the head ?

 

Postscript

 

According to the BMA Ne Guide to Medicines and drugs ( 8th Edition, 2011) Doxycycline is a tetracycline antibiotic - having been treated with tetracyclines as a kid, I know they are heavyweight, industrial grade anti-biotics.

 

Nick

Edited 1 May, 2014 by Clunkclick

[Clunkclick]

Further, more readily understandable stuff, from the entry in the BMA Complete Family Health Encyclopedia (1st Edition, 1990):-

 

" A disease characterised by skin changes, flu-like symptoms and joint inflammation. It was first described in the community of Old Lyme, Connecticut in the US in 1975.

 

Causes and Incidence:

 

Lyme disease is caused by the bacterium  BORRELIA BURGDORFERI  which is transmitted by the bite of a tick which usually lives on deer but can infest dogs. Most cases have occurred in the North-Eastern US, bu the disease has also been reported in the UK and other European countries.

 

Symptoms and Complications:

 

At the site of the tick bite, a red dot may appear and gradually expand into a reddened area up to 5mm across;in some cases, however, the bite passes unnoticed. Symptoms such as fever, headache, lethargy and muscle pains usually develop, followed by a characteristic joint inflammation, with redness and swelling, typically affecting the knees and other large joints.

 

The symptoms may vary in severity, and occur in cycles lasting a week or so. Unless the disease is diagnosed and treated, symptoms may continue for several years, gradually declining in severity. There is usually no permanent damage to joints.

 

Complications affecting the heart (Such as myocarditis and heart block) or the nervous system ( Such as meningitis) occur in some cases.

 

Diagnosis and Treatment

 

Anyone in whom the above symptoms develop, particularly after a tick bite, should consult a doctor. The diagnosis of Lyme Disease can be confirmed by blood test.

 

If diagnosed before joint inflammation occurs, the disease can be quickly cleared-up with antibiotic drugs.

 

If the disease is more advanced, non-steroidal anti-inflammatory  drugs and sometimes corticosteroid drugs are given and a cure may take longer."

 

 

I shouldn't think the spread of Monk Jack deer, foxes and badgers into urban areas is doing much to restrict the spread of this - I think, pet dogs being laid low in a small part of wooded East Anglia, is the most recent manifestation.

 

 

Nick

Edited 1 May, 2014 by Clunkclick