Lyme Disease?

TrasaM

TrasaM

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I contracted lyme disease about 8 years ago and had it for 4 years before it was diagnosed. I'd be interested in hearing from anyone else who has had it themselves or knows someone who has/ had it.

What type of treatments were used?
Has there been a full recovery ?
Has there been any lasting damage done?
Do you know how it was contracted?

I won't go into details of mine just now but am happy to relate the whole sorry saga if there is any response or interest.
 
Hi! yep....I'm the same....and find it very difficult to talk about - it took 2 years to diagnose and I felt that my life was ended - I had become housebound and incapacitated....am tons better now but still not back to my best 3 years on....the prof I saw said it would take 5 years and I agree....

I took docycyclene (Sp???!) antibiotic for 6 months in tablet form. I have had no follow up appointments, just battled back to health the hard way.

I lost 80-85% hearing in one ear, 35% sight loss in one eye and my balance is shot to pieces! I am now riding and able to drive/work etc but when I am tired I get very wobbley and some days am still weak.

I have no idea how I got it - I am a country girl and walk thru the hay fields etc etc/long grass in shorts....

I had flu in November 2007 and I "think" that's when it got me/affected me, although prof at the John Radcliffe Hosp in Oxford said I could have been bitten ages before but the flu triggered the immune system failure.

Feel free to message me - happy to listen.

On the up side, I am working and riding and living my life - it is different but I am on the way back. I do still get chronic headaches but I am alive and I intend to remain that way - I never ever want to go back to the shell that I had become and the string of mis diagnosis and being told it was stress related!!!

Hope this helps?
 
Hi Catherine ..thank you for replying. It's a nasty disease and it's amazing how little is still known about it. I first noticed the bites a few days after I'd been to a local castle and gardens. My left leg felt itchy and when I scratched it it really hurt. The second area was on the top of my head amd I could barely touch it it was so painful. I went to the doctor who dismissed it as some sort of fungal infection caused by an insect bite. No treatment required :rolleyes: The one on my leg developed what we now know is the typical bulls eye rash. I did also mention this to GP. This continued to expand amd the one on my head resulted in me having a red rash across the upper half of my face. Back to the doctor again who diagnosed acne rosecia..have never had a spot in my life let alone acne. Still no treatment or test. Over the following year I had lots of periods of feeling quite fluey with my temperature fluctuating. I also started to get palpitations ..back to GP who diagnosed too much caffeine! Over the next few years I became more and more tired and anxious and sone days were a complete struggle to just get out of bed. I returned to GP as the red area on my leg had flared up and my skin had thinned and was very red. I could barely get my shoe on as my foot had also swollen. I also had a permanently red nose so I looked like I had been hitting the bottle. I was referred to a dermatologist who looked but did not recognise this mystery rash but was quite definate that it was not connected to the original bite. Around the same time I had spoken to someone who mentioned Lyme disease so I'd asked my GP for a test. He agreed but said I was being silly in thinking that an insect bite could possibly be the cause. This took me to just before I was married ( 4 yrars ago ) and with one shoe not fitting and a flushed face I was not happy..not to mention the other symptoms. Fortunately as it turned out I got a tooth abscess and within days of taking the antibiotics my face was less red and my leg and foot less swollen. This sorted the shoe fitting problem and face needed less camoflage to disguise the redness on my wedding day.
The test results were back when I returned from honeymoon confirming that it was Lyme disease. I had six months on doxycyclene, same as you. However requests to get referred to a specialist were denied so I received nothing by way of informed advice or treatment. Four years on and I think I am more or less ok but I have never regained the same level of energy I used to have. I also developed sensitivity to alcohol but this is now easing. :) and I don't get palpitations any more.

What is really worrying about this..same as in your case, is the level of ignorance amongst the medical profession. There are lots of stories about mis diagnoses so chances are there are a lot of people who are suffering on thinking that they have MS, ME, depression, arthritis or a range of other illnesses. Another thing is that I never found a tick either on my head or leg before this started and like you I did not associate the flu I had shortly afterwards with the bites. I count myself very lucky in that apart from lack of energy, both physical and mental, I cannot identify any other damage.
 
I know of someone who had it. A husband of a friend. Took ages to diagnose, wife kept asking doctors to test for Lymes. Eventually they did and then gave a course of antibiotics, which cleared it up quite quickly. He lost a lot of weight and was ill for a long time.
 
Hi!

I echo your experience almost perfectly....the prof I saw (eventually) said that it was too late to do a blood test and that the baceria mimics your own system so if you've had it for a long time, you may not find it - a false negative result.

It has been a LONG haul back and only part of the way there - I never saw the tick but am quite moley so may not have noticed anyway.....I lost about 2 stone (sadly put it back on again!) but that comment aobut energy levels is dead right....

Keep on trucking and thanks for your story - it sounds extremely similar to my own experience and sometimes if I get a touch of lurgy I get terribly anxious that it is back and that is utterly terrifying.....not the case, of course, the bacteria is dead, but still scary and I am definately NOT an anxious sort of person.

Keep going!!

Catherine
 
Hi, great thread.

My mum has just been diagnosed with lyme disease.
She was originally diagnosed with shingles, but it just didn't fit. she'd had lyme disease before and we knew what we would expect.
The next time we went to the dr they diagnosed her with lymes and put her straight on medication and sent her for bloods immediately. Unfortunately her condition deteriorated and I had to take her to out of hours. They told her it was definitely NOT lymes disease and told her to stop taking the medication as it was making her sick. She continued to get worse (numb back, leg, falling over from loss of balance, being sick etc) and after continues nights of her screaming and crying from pain one night I had enough and dialed 999. they took her straight to hospital and had her in over night. On antibiotic drip she was much much better and came home a day later. Once home she deteriorated again and it really was a never ending process. Now, 3 months later she has finally been diagnosed with lyme disease (they LOST her blood test results!) She has lost the feeling in one leg and has no reflexes at all in that leg, she might never get it back.

It's a horrible horrible disease and I wish GPs were more aware of it. After reading your stories I feel extremely glad that our GP thought of lymes, eventhough she was taken off of them. She has a long recovery ahead of her but she's going in the right direction :)
 
I haven't had it but my cat did.

He was lame one day and then the following day he was sound on that leg, but was lame on a different leg. I took him to the Vet's who said that moving lameness was a strong indicator of Lyme disease as it causes joint pain. He reacted very strongly to having his joints flexed. He recovered fully after a short course of antibiotics.
 
Gracie..thank you replying. I'd hoped when I started the post that it might help someone. Seeing as how so many of us are around animals and in the countryside there is a real chance that there are others suffering unnecessarily. Sounds like your mother had an even worse GP than mine. I know they have a lot to keep on top of but you'd think they would be better informed or at least willing to say they don't know and make a referrral to a specialist.
I know I got off lightly seeing how much damage it's done to others who contracted it, like your mum. I hope that she continues to recover. I know that the damage to the skin on my leg has improved as have the tendons on my left foot. So don't give up hope as it does take some time to recover.
 
Faracat said:
I haven't had it but my cat did.

He was lame one day and then the following day he was sound on that leg, but was lame on a different leg. I took him to the Vet's who said that moving lameness was a strong indicator of Lyme disease as it causes joint pain. He reacted very strongly to having his joints flexed. He recovered fully after a short course of antibiotics.
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Are you in an area known to have Lyme disease? We have a country park here, leicestershire, which has lots of deer and they have now posted notices. However it's not just deer who catch it and are the source of infection. So far it seems to be ignored that any animal (or bird) who picks up an infected tick is a potential carrier. Can't see that it can be just ticks either but for now they are bring blamed as the chief culprit.
 
Are you in an area known to have Lyme disease?
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Not that I know of although the Vet had seen it before and said that it was nearly always in young male cats. I haven't seen a deer at all here (used to see loads where I lived before as we were near to Ashridge forest) but they could be shy. ;) We are not short on wildlife.
 
My sister who lives In Australia was bitten by a tic and contracted Lymes over 10 years ago. It has been very difficult to treat and she had had lots of different treatment to try to get rid of it. 3 months ago she came back to UK and saw a doctor at a private hospital in hemel Hempstead that have been amazing. She has had to go private and has cost over 20k but she is now starting to feel better. She has returned to Australia with a suitcase of drugs. She has over the years suffered terribly and now has chronic arthritis which flares up. The prof at the clinic recon they can lessen the desease but not sure she will ever get rid of it!!!! Terrible desease that not much is known about !!!
 
My horse got sick after moving him to a yard where there were a lot of deer. He was very depressed, wouldn't eat feeds and was appearing to be footy. Putting boots on him didn't help the footiness and over the years I came to realise it was his body and not just his feet.
He was diagnosed with Cushings and was put onto Pergolide, but he didn't improve. I had him tested for Lymes, amongst other tests but he was negative for everything except he had a slight positive to anaplasmosis, which apparently is like Lymes. He had a further test a couple of months later and was then clear.
It's four years ago now and he is retired, his PPID is under control but I haven't been able to ride him since as it seems to set him back again. He does still suffer, especially when he's cold or wet so I have to stable him overnight when it's wet and extra rug him.
He is a mystery and I do sometimes wonder if he could have been bitten by a tick, the dogs on that yard definitely were infected with them
 
muff747 said:
My horse got sick after moving him to a yard where there were a lot of deer. He was very depressed, wouldn't eat feeds and was appearing to be footy. Putting boots on him didn't help the footiness and over the years I came to realise it was his body and not just his feet.
He was diagnosed with Cushings and was put onto Pergolide, but he didn't improve. I had him tested for Lymes, amongst other tests but he was negative for everything except he had a slight positive to anaplasmosis, which apparently is like Lymes. He had a further test a couple of months later and was then clear.
It's four years ago now and he is retired, his PPID is under control but I haven't been able to ride him since as it seems to set him back again. He does still suffer, especially when he's cold or wet so I have to stable him overnight when it's wet and extra rug him.
He is a mystery and I do sometimes wonder if he could have been bitten by a tick, the dogs on that yard definitely were infected with them
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Ticks seem to carry do many nasties it must be hard to know where to start looking. I come from the west of Ireland and they are a major menace for livestock who have not become accustomed to them or are brought in from tick free areas. I've seen other threads on here about animals having Lyme. I don't know how reliable the tests are either. I know that every time I would try to get fit I'd manage about three weeks then get exhausted. Perhaps it works the same for horses. Thank you for replying :)
 
I haven't had lymme disease, but just prior to being diagnosed with a form of rheumatoid arthritis, my GP had me blood tested for Weils, lymme and just about every other form of infection which can affect the joints! He was a GP who also kept animals (pigs in his case) so absolutely understood the dangers.
 
From the Glasgow Herald. 20 Dec 2012.

OH..just bought this article to my attention.

A major investigation is under way after the death of a gamekeeper who was admitted to hospital with Lyme disease.

Scott Beattie, 43, worked as head stalker at Wyvis Estate, Glenglass, near Evanton, Ross-shire, where he lived on a farm with his partner, Louise Sutherland, and young sons Duncan and Marcus.

His death certificate reveals he suffered multiple organ failure, and suggests further test results could provide more information.

Lyme disease – which is spread by ticks often carried by deer – is a bacterial infection that rarely proves fatal and is usually treatable with antibiotics.

Mr Beattie died in Raigmore Hospital, Inverness, on December 4. His death was reported to the procurator-fiscal and the Crown Office Scottish Fatalities Investigation Unit is carrying out an inquiry.

A Crown Office spokesman said: "The investigation into the death is ongoing and the family will be kept updated."

An NHS Highland spokeswoman added: "As is standard, sudden deaths are referred to the procurator-fiscal".

Wyvis Estates factor Hugh O'Donnell said: "Scott was a greatly valued employee, a good friend and fantastic son, partner and father."

The bloodsucking ticks that carry the Lyme bug, borreliosis, usually feed off birds, deer and sheep. For anyone bitten by an infected tick, symptoms include a "target-like" rash of concentric circles, sometimes described as "like an RAF roundel or an archery target".

Professor Hugh Pennington, Emeritus Professor of Bacteriology at Aberdeen University, said the condition could be considered an "occupational disease" for farmers and estate workers and they ought to be given information on how to protect themselves and seek treatment.

However, he added he would be "very surprised" if the disease itself had caused Mr Beattie's death. He said: "That would be very uncommon. It is a chronic disease that is treatable through antibiotics. It can affect the heart, brain, nerves, joints and skin, but most people do get better. If it is combined with something else there is a theoretical possibility it could be fatal.

"The disease has a skin rash associated with it at the site of the bite, which is how most patients first notice it. People can be ill for quite a while before it is realised they have it."

If left untreated, Lyme disease can also cause neurological symptoms, including meningitis, palsy and encephalitis.

Researchers from the National Lyme Borreliosis Testing Laboratory have said the disease is on the rise in Scotland.

Wendy Fox, chairwoman of the tick-awareness charity Borreliosis and Associated Diseases UK, encouraged people to be vigilant. She said: "Some areas are considered highly endemic but you can pick up Lyme disease anywhere. People with overgrown gardens in urban areas can be bitten and we are seeing more cases of urban acquired infection."

Mr Beattie is survived by his partner and sons, as well as his parents and two brothers.

His funeral is being held at his home on the Wyvis Estate today.

Kirsten Johnson
 
Luckily for my mum she noticed the bulls eye rash, went to the gp who preliminarily diagnosed Lymes and she was in A and E that eve on super strong antibiotics so she was very lucky that our gp had diagnosed the only other local case in the last 10years. So far she has had no longer term effects bar a few achey finger joints but that could possibly just be down to horses.
 
Rebels said:
Luckily for my mum she noticed the bulls eye rash, went to the gp who preliminarily diagnosed Lymes and she was in A and E that eve on super strong antibiotics so she was very lucky that our gp had diagnosed the only other local case in the last 10years. So far she has had no longer term effects bar a few achey finger joints but that could possibly just be down to horses.
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Lucky for your mum that her GP was aware and acted promptly. I sent four years going back and forth to mine and being fobbed off. It's amazing how different the treatment can be. Pleased that your mum has made a good recovery. :)
 
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