Lyme Disease

rossiepp

Hi all.

I'm new to this forum craic so bear with me..

A few years back i was very ill with Viral Meningitis. It took about 3/4 months to fully recover. However, June of last year I became ill again and basically I've been ill on/off since then. I wouldn't know where to start with explaining my symptoms. It all started with stomach problems, migraine and mainly "flu like" symptoms. Ive been in/out of hospital, I've had numerous XRays, Scans, Food Intolerance Test, Endoscopy, Colonoscopy, MRI Scan etc.

The diagnosis for the stomach was Acid Reflux and Chronic ISB, although that took months for them to figure out.. the headaches were diagnosed as Migraine and Vertigo (dizzy spells). The list goes on.. I've been on medication for same for over a year, along with medication for low feretin(iron) and various other things. At one stage it was suggested that i take antidepressants although i refused profusely... I knew i wasn't depressed, more like "stressed out" because i was sick all the time and getting no answers as to what the hell was wrong with me!

Last July i started to get what i can only explain as "stinging or burning pains" up my spine, neck, left arm and left leg. At times its so bad I cannot walk up the stairs. Its very frightening, you feel like you are going to die with the pain of it. My GP sent me to MAU in the hospital. Its the Medical Assessment Unit and finally i was referred to an excellent consultant. To cut a long story short, he did every test under the sun, bit like an overall NCT! He was brilliant, easy to talk to, listened to everything I had to say and finally excepted that something was up. I have now been recently diagnosed as having Lyme Disease. While it is frightening to find out about it, its a relief that I know I'm not going mad! At times i feel no-one believed me that i was so unwell on the inside but kept the brave face and tired my best to just "get on with it" as they say.

Lyme Disease has different stages and as I'm having severe neurological symptoms, it seems i may be in the second or third stage Lyme Disease. Basically the bacteria has been in by blood for years! Lyme Disease carries many forms and the only way of finding out what Lyme bacteria is in your blood stream is to have it tested in the UK. I'm currently awaiting results from my blood tests sent to England. In the meantime I'm on very strong antibiotics the past 3 weeks, and new painkiller specifically for neurological pain. The symptoms have eased off, a little but Ive developed a kidney infection, on top of everything else and I'm off work sick once again, in the bed most of the day, its driving me silly! Thank god for the laptop here on my lap..

Womoma, I would strongly recommend you go to your doctor and tell her, actually INSIST, you want your bloods sent to Western Blot in the UK. A blood test done in Ireland can only confirm that there is Lyme present in your blood but needs to be sent to Western Blot for confirmation of the type/types of Lyme bacteria, in your blood system.

Meanwhile, its been a relief to find this forum, I've been searching the net since I found out that I have Lyme Disease and there is so much information but mainly from American Sites. Lyme Disease is so rare in Ireland, relatively new, so they say. There is so little known about Lyme Disease in Ireland, its crazy. My own GP knows very little about it as its so rare but hopefully when my blood tests come back from the UK (it takes 6/8 weeks) I can start proper treatment, although reading through many of the American Websites its a bit frightening to find out that its not curable.. Will just have to hold out until i hear form my Consultant. He might have a word in my ear as he told me NOT to be going looking it up on the net, said it would only alarm me..!

If anyone has been diagnosed with Lyme Disease or have anything like my symptoms above etc I would be grateful to hear your stories or get in touch.

Hopefully things will get better..

Dizzyblonde

Hi rossiepp

I'm glad you've got a diagnosis and are having treatment, but if the dizziness is a problem have a look at www.dizzytimes.com. It's a support group for people with all sorts of balance disorders. We have some members with Migraine Associated Vertigo.
It's a great place for having a rant and receiving support.

Fajitas!

Welcome to the forum, firstly.

Second, at least you have had a diagnosis. Hopefully whatever's happening over in the states will be coming over here shortly in terms of treatments etc.

Best of luck

rossiepp

Cheers Dizzyblonde,

Not suffering much with dizziness as such at the moment. The vertigo.."woolly head" or "foggy head" as I would call it....seems under control. Will check out the 'dizzy times' website nonetheless.

r3nu4l

rossiepp wrote: »

Womoma, I would strongly recommend you go to your doctor and tell her, actually INSIST, you want your bloods sent to Western Blot in the UK. A blood test done in Ireland can only confirm that there is Lyme present in your blood but needs to be sent to Western Blot for confirmation of the type/types of Lyme bacteria, in your blood system.

Hi rosiepp, I'm sorry to hear about your diagnosis for Lymes disease. Can you clarify where your tests are being conducted? Is the company called Western Blot? There is a fairly standard diagnostic technique called the Western Blot technique that is used for identifying proteins that are specific to the spirochete bacteria that causes Lyme's disease.

See this Wiki for more information on the technique. Myself and some other boards users have performed hundreds or even thousands of Western Blot experiments so if you have any questions on that score, just shout

Now that you have a diagnosis at least your consultant should be able to provide you with some treatment that will provide you some relief from your symptoms. Good luck!

rossiepp

Hi Fajitas

Thanks for welcoming me to the forum and wishing me luck, cant believe its less than an hour since i posted the thread and a few replies already! Should have got onto it months ago but only came across this site this morning.. see I'm new to this forum craic! Yea, glad and relieved i have a diagnosis, its a start after years of suffering with no answers. Here's to proper treatment once bloods are back from UK.

I'm hoping there might be other Lyme Disease sufferers out there who might log-on.. It would be good to share the story and find out more information etc.

oneeyedsnake

rossiepp wrote: »

Hi all.

I'm new to this forum craic so bear with me..

A few years back i was very ill with Viral Meningitis. It took about 3/4 months to fully recover. However, June of last year I became ill again and basically I've been ill on/off since then. I wouldn't know where to start with explaining my symptoms. It all started with stomach problems, migraine and mainly "flu like" symptoms. Ive been in/out of hospital, I've had numerous XRays, Scans, Food Intolerance Test, Endoscopy, Colonoscopy, MRI Scan etc.

The diagnosis for the stomach was Acid Reflux and Chronic ISB, although that took months for them to figure out.. the headaches were diagnosed as Migraine and Vertigo (dizzy spells). The list goes on.. I've been on medication for same for over a year, along with medication for low feretin(iron) and various other things. At one stage it was suggested that i take antidepressants although i refused profusely... I knew i wasn't depressed, more like "stressed out" because i was sick all the time and getting no answers as to what the hell was wrong with me!

Last July i started to get what i can only explain as "stinging or burning pains" up my spine, neck, left arm and left leg. At times its so bad I cannot walk up the stairs. Its very frightening, you feel like you are going to die with the pain of it. My GP sent me to MAU in the hospital. Its the Medical Assessment Unit and finally i was referred to an excellent consultant. To cut a long story short, he did every test under the sun, bit like an overall NCT! He was brilliant, easy to talk to, listened to everything I had to say and finally excepted that something was up. I have now been recently diagnosed as having Lyme Disease. While it is frightening to find out about it, its a relief that I know I'm not going mad! At times i feel no-one believed me that i was so unwell on the inside but kept the brave face and tired my best to just "get on with it" as they say.

Lyme Disease has different stages and as I'm having severe neurological symptoms, it seems i may be in the second or third stage Lyme Disease. Basically the bacteria has been in by blood for years! Lyme Disease carries many forms and the only way of finding out what Lyme bacteria is in your blood stream is to have it tested in the UK. I'm currently awaiting results from my blood tests sent to England. In the meantime I'm on very strong antibiotics the past 3 weeks, and new painkiller specifically for neurological pain. The symptoms have eased off, a little but Ive developed a kidney infection, on top of everything else and I'm off work sick once again, in the bed most of the day, its driving me silly! Thank god for the laptop here on my lap..

Womoma, I would strongly recommend you go to your doctor and tell her, actually INSIST, you want your bloods sent to Western Blot in the UK. A blood test done in Ireland can only confirm that there is Lyme present in your blood but needs to be sent to Western Blot for confirmation of the type/types of Lyme bacteria, in your blood system.

Meanwhile, its been a relief to find this forum, I've been searching the net since I found out that I have Lyme Disease and there is so much information but mainly from American Sites. Lyme Disease is so rare in Ireland, relatively new, so they say. There is so little known about Lyme Disease in Ireland, its crazy. My own GP knows very little about it as its so rare but hopefully when my blood tests come back from the UK (it takes 6/8 weeks) I can start proper treatment, although reading through many of the American Websites its a bit frightening to find out that its not curable.. Will just have to hold out until i hear form my Consultant. He might have a word in my ear as he told me NOT to be going looking it up on the net, said it would only alarm me..!

If anyone has been diagnosed with Lyme Disease or have anything like my symptoms above etc I would be grateful to hear your stories or get in touch.

Hopefully things will get better..

Do you think you were infected in Ireland?Have you been on holiday in the americas or eastern europe?

rossiepp

Gez this is great, r3nu4l.. Thanks for your reply.

My blood tests are being conducted in Western Blot, Southampton. I presumed Western Blot was the name of the company.. but thanks, yes it must be the 'Western Blot technique' used for testing for Lyme Disease.

I think they are testing for Borellia or Burgdorferi bacteria or something like that? While the nurse was taking my blood, i was quick enough to read the sheet being sent with the blood... very bold but they don't tell you these things!!

Are you a in the medical profession or working in a lab etc what kind of Western Blot experiments have you done? Is Western Blot specifically for testing Lyme Disease and other infectious illnesses?

rossiepp

Hi oneeyedsnake,

Seemingly you can contact Lyme Disease from a tick bite! Having answered numerous questions from the consultant and other doctors I have no recollection of ever been bit by a tick. They asked if i was involved in hill walking, orienteering and the likes, or camping out with the boy scouts etc? No to all the questions. At that point I did think, would everyone in Ireland who got bit by a tick end up having Lyme in their blood? Seemingly not, only if the tick was carrying the lyme bacteria, seemingly comes from deers.. and seemingly is so rare in Ireland.

Was over 10 years since I was in America, was in Spain almost every year for the usual summer sun getaway but cant ever recall being bit by a tick or any rash or where all this might have begun. I think myself, its been in my system for years and the Viral Meningitis I had years ago is connected in some way. Think its all just coming to a head at this stage.

r3nu4l

rossiepp wrote: »

Gez this is great, r3nu4l.. Thanks for your reply.

My blood tests are being conducted in Western Blot, Southampton. I presumed Western Blot was the name of the company.. but thanks, yes it must be the 'Western Blot technique' used for testing for Lyme Disease.

I think they are testing for Borellia or Burgdorferi bacteria or something like that? While the nurse was taking my blood, i was quick enough to read the sheet being sent with the blood... very bold but they don't tell you these things!!

Are you a in the medical profession or working in a lab etc what kind of Western Blot experiments have you done? Is Western Blot specifically for testing Lyme Disease and other infectious illnesses?

Firstly, I'm not a medical doctor. I have a PhD in medical molecular biology and worked as a lab scientist for 7 years but I now work as a medical writer for a medical communications agency.

Secondly, Lymes disease is caused by a bacterium called Borrelia burgdorferi. The bacterium is usually transferred to humans via tick bites.

Your blood tests are most likely being conducted here:

Lyme Borreliosis Unit, Southampton

Southampton Laboratory Level B
South Laboratory Block
Southampton General Hospital
Southampton SO16 6YD

WesternBlot, Southampton refers to the Western Blot test to be conducted in the Lyme Borreliosis Unit, Southampton

I'm going to try to explain the western blot technique but it can be difficult to grasp for non-scientists so if you don't get it, don't worry, all you really need to know is that the test is able to give an indication of whether you have the disease or not.

Western Blot - A simplified version of the test.

Western Blot is a technique used to detect proteins. All life on earth produces proteins. So if the bacteria is present in your body so are its proteins.

The bacterial protein is seen by our immune system as a 'foreign invader' and therefore when this invader is discovered by our immune system, we produce a small protein called an antibody.

These antibodies are designed to stick specifically to the bacterial proteins. They act like a flag to attract attention, telling the rest of the immune system that what they are attached to is an invader and needs to be gotten rid of.

During the Western Blot test all the proteins are taken from your blood and are then separated, usually based on how big they are. They are then stuck to a special type of blotting paper.

Basically, a Western Blot uses another type of antibody that has been designed to detect a specific protein (either bacterial, or viral or another protein or even an antibody - they are all different types of protein).

In the case of the Lymes disease test, the Western Blot antibody that is used in the test has been designed to detect antibodies to the Borrelia burgdorferi bacteria that causes Lymes disease.

So the Western Blot antibody is looking for another type of antibodies that attack the bacteria.

If the Western Blot antibody finds an antibody that attacks the bacteria then it sticks to it and cannot be removed. The Western Blot paper is then washed with a solution to remove any antibodies that did not stick.

A special liquid is then poured onto the Western Blot paper. This liquid is designed to show if the Western Blot antibody has stuck to the paper. If the liquid does not show the Western Blot antibody because it has been washed away then the person is very unlikely to have Lymes disease, if the liquid does show the Western Blot antibody then it means that the Western Blot antibody detected and stuck to antibodies that attack the bacteria and this indicates that the person may have Lymes disease.


This has probably been a bit confusing for you and if it has then I apologise but please feel free to ask more questions.

rossiepp

Brilliant While its a bit confusing i do grasp what you mean. This is just what i was looking for, a bit of explanation. At least now i know what the term Western Blot refers to and a bit more about the bacteria. Your a genius r3nu4l Thanks a mill.

Just 1 or 2 quick questions i might run by you...

Can it be possible for the test from western blot to come back negative if Ive been on strong antibiotics for the kidney infection at the time the bloods were taken, could that mean that the lyme is lying dormant or under control at the time so to speak? Hope you grasp the question, am a bit confused myself but i read on one of the American sites that you can test negative for lymes but still have it in your system? Doesn't make sense to me but your Medical Lab Science history might help explain

Another thing, my urine samples keep coming back equivocal, have been for months, what does this really mean?

Thanks again

r3nu4l

Ha, I'm no genius If I didn't know that little bit of info having performed and taught western blots for years I should be shot

Okay, I have to be very careful about answering certain questions as boards.ie has a policy of not giving out medical advice...and I'm also not qualified to give medical advice, just scientific advice

There is debate over false positive and false negative results and their causes (including dormancy) that I don't want to enter into here. Sorry. There are certainly other bacteria and viruses that can hide away inside certain body cells and evade detection and elimination and some people believe this may be the case with Lymes disease. Do ask your consultant about this as s/he will know a lot about it and should be able to advise you.

The same goes for the urine test results (ask your consultant) but basically an equivocal result can mean 'positive' or 'indeterminate'. In other words, the test result appears positive but only a different battery of tests can confirm the result as it's not a 100% positive result. A lack of 100% positivity might mean that the test isn't good enough to say for sure or that the results are not cut and dry and further testing is needed.

That's about all I can say without getting into the area of medical advice, something I'm not qualified (or allowed) to give.

One word of caution, I would stick with reading information from registered charities that support Lymes disease research or recognised Government Institutions.

The CDC website has good, accurate and reliable info on Lymes disease. Use the menu on the left-hand side of the page to navigate the information.

rossiepp

Thanks r3nu4l, great to be putting your qualifications to good use

Don't want you into any trouble here on this site but your advice and scientific info is great to get. Fair play to you.

The debate over positive/negative lyme tests seems to go on a bit alright so we wont go getting into that.. will discuss all with the consultant as soon as results are back from western blot, hopefully will have all the answers then!

Will keep you posted and definitely log onto this forum from now on. Its great to find people to discuss it, will log onto the site you mentioned, thanks a mill.

r3nu4l

rossiepp wrote: »

Thanks r3nu4l, great to be putting your qualifications to good use

Thanks, as a medical writer I put my qualification to good use every day although if there was more money in Science I'd return to the lab in a hearbeat

I'd recommend that even if you don't find anyone else here that also has Lymes disease you should still come back when you're feeling down by it all. A lot of the people on this LTI forum will still be able to identify with how you feel even if they don't specifically suffer from Lymes.

Thankfully I don't suffer from any LTI, unless addiction to boards.ie and chronic procrastination suddenly become reclassified as LTI's!

rossiepp

Cheers r3nu4l... your a tonic

Will def stay on the forum now that I've found it!

I sincerely hope your addiction to boards.ie and chronic procrastination never become reclassified as LTI's or you'll be right bother..!

Take care, catch up with you again.

condra

Just read this thread.

r3nu4l honestly you cant imagine how much it means to people like rossiepp and myself to hear some medical explanations from someone who knows what they're talking about.

Rossie, since the pretty dire visit to my new GP today, Im considering visiting Patrick Magovern, who is appearantly quite good with people with CFS etc.
http://www.integrativemedonline.com/ME_Severe_Fatigue.html
It would just be to make sure that I get any tests needed that may have been omitted down the line.

Im pretty p***ed off this evening to be honest. I felt that the doctor today didnt seem interested in trying to help me. The attitude seemed to be that I should be thankfull that I had gotten so many tests done in the past.

r3nu4l, if you have time.. One thing which I find curious is the appearant link between different illnesses that people with CFS type symptoms often seem to show.
For example Rossiepp, who had Viral Meningitis, then later, Lyme disease...
Ive read of people with a plethora of conditions/diseases, and sometimes I cant imagine where the link is, other than, perhaps a weak immune system.

LegacyUser

My situation parallels your own. I found out just this Thursday that I have positive tests results for Lyme’s disease. I fist went to my GP with a rash the size of a dinner platter on my left side, a year and a half ago. I was told that it might be shingles, prescribed some pills and sent home. I got sicker with flue like symptoms. As the first rash faded I got another on my back, then another on my shoulder, then on the back of my neck. Finally I got a blotchy patch on my throat that has never left. I went back to my GP again the next week and she sent me into Tralee General for a Lyme’s test. The A&E doctor told me there was NO Lyme’s in Ireland. He did take blood for a test which eventually showed negative. Besides the flue symptoms I had tremendous evolving my shoulders, upper back and neck. At one point my left arm went numb; I got dizzy and passed out on the kitchen floor. I got an ambulance to take me into the A&E, where I was told there was nothing wrong with me. I had seen several doctors and had many tests; MIR, scans, x-rays, blood work and after all this I was told that, “maybe you are a little depressed”?
Yeah I was depressed alright. The incompetence of the medical profession in Ireland is very depressing. I was back to the general medical specialist again. Every time I have gone into the clinic, only once had I seen the head man. This time they gave me yet another trainee and she was just telling me how good all my tests looked and there was nothing more they could test, when I told her I wasn’t leaving there until I saw the head of the department. Well I did see him. And he ordered a re-test of Lyme’s. That is how I got the news this Thursday. It has been in my blood for at least 18 months now. I have terrible upper body pain, nausea, dizziness, week legs and electric like shocks that keep me awake all night. I was put on an antibiotic and am supposed to be going to Cork, to see some doctor there that has some experience with Lyme’s. It is very hurtful to know that if my symptoms had ever been listened to, If I had been taken seriously, that any decent doctor should have known that it could take some time for Lyme’s to show up in the test and would have had me re-tested in a month or two, and I would not be suffering so now. This disease has taken over my life. I still haven’t a clue if I can have any reasonable hope of ever having my life back.

lostartist

My situation parallels your own. I found out just this Thursday that I have positive tests results for Lyme’s disease. I fist went to my GP with a rash the size of a dinner platter on my left side, a year and a half ago. I was told that it might be shingles, prescribed some pills and sent home. I got sicker with flue like symptoms. As the first rash faded I got another on my back, then another on my shoulder, then on the back of my neck. Finally I got a blotchy patch on my throat that has never left. I went back to my GP again the next week and she sent me into Tralee General for a Lyme’s test. The A&E doctor told me there was NO Lyme’s in Ireland. He did take blood for a test which eventually showed negative. Besides the flue symptoms I had tremendous evolving my shoulders, upper back and neck. At one point my left arm went numb; I got dizzy and passed out on the kitchen floor. I got an ambulance to take me into the A&E, where I was told there was nothing wrong with me. I had seen several doctors and had many tests; MIR, scans, x-rays, blood work and after all this I was told that, “maybe you are a little depressed"? Yeah I was depressed alright. The incompetence of the medical profession in Ireland is very depressing. I was back to the general medical specialist again. Every time I have gone into the clinic, only once had I seen the head man. This time they gave me yet another trainee and she was just telling me how good all my tests looked and there was nothing more they could test, when I told her I wasn’t leaving there until I saw the head of the department. Well I did see him. And he ordered a re-test of Lyme’s. That is how I got the news this Thursday. It has been in my blood for at least 18 months now. I have terrible upper body pain, nausea, dizziness, week legs and electric like shocks that keep me awake all night. I was put on an antibiotic and am supposed to be going to Cork, to see some doctor there that has some experience with Lyme’s. It is very hurtful to know that if my symptoms had ever been listened to, If I had been taken seriously, that any decent doctor should have known that it could take some time for Lyme’s to show up in the test and would have had me re-tested in a month or two, and I would not be suffering so now. This disease has taken over my life. I still haven’t a clue if I can have any reasonable hope of ever having my life back.
To make a long story short . . . If anyone out there has had Lyme's disease untreated for over a year and then recieved treatment of antibiotics, please let me know how you are doing. :cool:

lostartist

Anyone know of a good Lyme's disease doctor in Ireland?

lostartist

I have been referred to a specialist in Cork. Dr. Horgan. Anyone hear of her or go to her. What was your experience like?:cool:

buffster

Hi Lostartist, would you be able to give me the details of the doctor in Cork you have been referred to? I too am looking for a knowledgeable lyme doctor in Ireland who can administer IV ceftrioxine for my brother who has recently been diagnosed with Lyme.

Kind regards,
Buffster

LegacyUser

Dear Rossiepp,

Would you please be able to give me the name of your consultant as he sounds brilliant. I have just been diagnosed with Lyme Disease and have had no luck with good consultants at all in Ireland. Thanks a million.

finomis

rossiepp wrote: »

Hi all.

I'm new to this forum craic so bear with me..

A few years back i was very ill with Viral Meningitis. It took about 3/4 months to fully recover. However, June of last year I became ill again and basically I've been ill on/off since then. I wouldn't know where to start with explaining my symptoms. It all started with stomach problems, migraine and mainly "flu like" symptoms. Ive been in/out of hospital, I've had numerous XRays, Scans, Food Intolerance Test, Endoscopy, Colonoscopy, MRI Scan etc.

The diagnosis for the stomach was Acid Reflux and Chronic ISB, although that took months for them to figure out.. the headaches were diagnosed as Migraine and Vertigo (dizzy spells). The list goes on.. I've been on medication for same for over a year, along with medication for low feretin(iron) and various other things. At one stage it was suggested that i take antidepressants although i refused profusely... I knew i wasn't depressed, more like "stressed out" because i was sick all the time and getting no answers as to what the hell was wrong with me!

Last July i started to get what i can only explain as "stinging or burning pains" up my spine, neck, left arm and left leg. At times its so bad I cannot walk up the stairs. Its very frightening, you feel like you are going to die with the pain of it. My GP sent me to MAU in the hospital. Its the Medical Assessment Unit and finally i was referred to an excellent consultant. To cut a long story short, he did every test under the sun, bit like an overall NCT! He was brilliant, easy to talk to, listened to everything I had to say and finally excepted that something was up. I have now been recently diagnosed as having Lyme Disease. While it is frightening to find out about it, its a relief that I know I'm not going mad! At times i feel no-one believed me that i was so unwell on the inside but kept the brave face and tired my best to just "get on with it" as they say.

Lyme Disease has different stages and as I'm having severe neurological symptoms, it seems i may be in the second or third stage Lyme Disease. Basically the bacteria has been in by blood for years! Lyme Disease carries many forms and the only way of finding out what Lyme bacteria is in your blood stream is to have it tested in the UK. I'm currently awaiting results from my blood tests sent to England. In the meantime I'm on very strong antibiotics the past 3 weeks, and new painkiller specifically for neurological pain. The symptoms have eased off, a little but Ive developed a kidney infection, on top of everything else and I'm off work sick once again, in the bed most of the day, its driving me silly! Thank god for the laptop here on my lap..

Womoma, I would strongly recommend you go to your doctor and tell her, actually INSIST, you want your bloods sent to Western Blot in the UK. A blood test done in Ireland can only confirm that there is Lyme present in your blood but needs to be sent to Western Blot for confirmation of the type/types of Lyme bacteria, in your blood system.

Meanwhile, its been a relief to find this forum, I've been searching the net since I found out that I have Lyme Disease and there is so much information but mainly from American Sites. Lyme Disease is so rare in Ireland, relatively new, so they say. There is so little known about Lyme Disease in Ireland, its crazy. My own GP knows very little about it as its so rare but hopefully when my blood tests come back from the UK (it takes 6/8 weeks) I can start proper treatment, although reading through many of the American Websites its a bit frightening to find out that its not curable.. Will just have to hold out until i hear form my Consultant. He might have a word in my ear as he told me NOT to be going looking it up on the net, said it would only alarm me..!

If anyone has been diagnosed with Lyme Disease or have anything like my symptoms above etc I would be grateful to hear your stories or get in touch.

Hopefully things will get better..

lostartist

Buffster- Sorry I can't tell you much. My GP sent out a letter requesting an URGENTappointment with the Cork University Hospital Contagious Disease Specialist, Dr. Horgan, two weeks ago. I have not heard back with either an appointment date, or even a letter stating that I am on the waiting list. If this Doctor is even Lyme’s Literate, I can't tell you. I am hoping someone out there has seen her and will let me know what they think of her.
Meanwhile I am on By-Mycin twice daily. I have experienced no improvement in my condition two weeks into the antibiotic. I went back to my GP today, to tell her I am in terrible pain and have to lie in bed most the day with a hot water bottle on my back to get some relief. She prescribed Tradol 50 mg for the pain.
I have been sick a year and a half, finally diagnosed just two weeks ago, but I have still not gotten any information regarding a treatment plan or a prognosis of recovery from any Irish doctor. My own GP tells me nothing - I can only guess she knows nothing. Anything I have managed to learn about Lyme’s - I have gotten off the internet. The lack of information and awarness, amoung even the medical professionals in the country, regarding Lyme's disease is a national disgrace.
I was told by a good friend in the health care field, that the best doctor in the country for Lyme's is Dr. Sheehan, of the Mater Hospital Dublin. Because that is so far from me, I haven't tried to see him. I thought I would try the Cork doctor first. Travel is especially painful for me. But if you are anywhere near Dublin, it might be worth looking into Dr. Sheehan.
You must also take your medical records to any appointment you get. I requested my medical records from Tralee Hospital a week ago and they have told me it will take months to receive them. So, if you are going to try to get your brother into someone without a referral from your GP you need to request those records a.s.a.pGood luck. Your brother is lucky to have you. We all need an advocate with the health care system we have

LegacyUser

Hey there,

I just had to reply when I saw that doctor's name mentioned.
Save your cash and don't bother with Sheehan. I went to see him, full of hope, and he refused to even re-test me for lyme as I had 4 week's doxycycline 4 years ago. Despite me having 2 positive elisa tests and western blot strains from 2 different labs, along wth textbook symptoms, he told me that the month's doxy would have cured me if it even had been lyme in the first place! That an 'expert' could be so behind the times is scary. The US docs generally agree on much longer courses being necessary to treat chronic lyme successfully. (I've been sick for almost 6 years).

Luckily enough, I found an excellent consultant rheumatologist in the UK who is treating me (after the elisa and western blots which he did, again came back positive) for lyme, and for co-infections which I also tested positive for. This will be a long road, as I've to have 12 weeks IV ceftriaxone with support drips and a cell repair programme and will be on oral antibiotics for quite a while, but after just 8 weeks I'm starting to see some improvement. I received 4 weeks IV cef 18months ago which almost completely cleared my joint pain (which was always my worst symptom-I could barely walk at my worst) to the extent that I'm off all steroidal and non-steroidal anti-inflammatories now. All of my neuro symptoms with the exception of headaches such as numbness and muscle twitching disappeared too, so the antibiotics definitely work. It's just knowing how long to stay on them for so that the disease will be completely eradicated that is a problem.

My advice is to get out of Ireland if at all possible. The doctors here did nothing for me except tell me that (a) I 'probably' had arthritis (to a previously healthy 21 year old!) or (b) that I 'probably' had ME and to get on with it. They tanked me up on steroids and painkillers (I too was on tramadol-yuck!!) and offered no assistance to actually getting to the root cause of my symptoms. Sorry if I sound bitter, but I honestly feel that if I was left at the mercy of Irish Infectious Diseases 'experts' I would never get better. There are some lyme literate doctors in the UK, Germany and Switzerland. Unfortunately this is costly, but if it's an option-I would grab it. Also check out the excellent group on Yahoo groups called Eurolyme. This is run by lyme sufferers and has been an invaluable source of information to me.

Although lyme is a nasty disease, at least it is treatable. I'm confident that now that I have a doctor who knows what he's doing I will make a full recovery inside the next couple of years. Just make sure that you find a competent doctor who follows the ILADS guidelines and will give you sufficient antibiotics to completely kill the infection rather than just dampen it down temporarily. Also try to get tested for co-infections, as if you have them, treatment for lyme alone may not be enough to completely cure your symptoms. And don't listen to ignorant docs who try to tell you that there's no lyme in Ireland! I know too many people who have or have had lyme for that to be true.

Best of luck, it's a long road but you'll come to the end of it eventually!!

lostartist

Thanks for the advise. I don't see how I can go to the UK for treatment though. I stopped taking the Tradol. I didn't help the pain and only made me even more tired. I am taking Difene for the pain now. I am only on it two days, but it doesn't seem to be much help yet. I have been told that I will get into to see the specialist in Cork sometime in January. That is Dr. Horgan. I hope she will take an aggressive stance. The concerns over the capability of the Irish doctors, doesn't make coping with this disease any easer. Is there any organized effort among Irish patients with Lyme's to lobby the health board in respect to getting awareness raised on the issue?

LegacyUser

Hey there,

Just so you know, there are cheaper ways of getting treatment abroad than my case would imply. I've had to go to England for 12 weeks of IV's, but I know a lady who is now fully recovered after only taking oral antibiotics. The problem is getting someone to prescribe them for long enough, but it can be done! The trick is to do as much research yourself as you can, and do check out Eurolyme. There are some wonderfully informed and kind people on there who would be able to advise you further.

I'm not aware of anyone lobbying the health board. It's difficult to take on such an enormous task while ill, but I know that myself and others plan on raising awareness once we're recovered and have the strength to do so.

Best wishes and I do hope Dr. Horgan knows her stuff and can help you get better.
On a side note, I too took difene and didn't find them any good :-( The only thing that helped me, and was like a magic drug, was cortisone. However, this is not without it's side effects unfortunately.

M.

kangaroo

Rossiepp - how are you doing?

Most people in society will have antibodies to lots of bacteria and viruses as they will have been exposed to them in their lifetime. Did you have a positive Elisa?

Given you had viral meningitis, I'm wondering whether you might be better to consider that you have a post-infectious syndrome - there seems to be some doubt about your Lyme diagnosis? Despite the term Chronic Fatigue Syndrome, generally CFS is a post-infectious syndrome and people with post-infectious syndromes get the diagnosis of CFS or ME. Much research concentrates on other angles apart from infectious angles; some research and clinical practice does concentrate on infections, but not just bacteria but also viral infections e.g. treatment with interferon, immunoglobulin, various antivirals.

Some researchers feel with CFS or ME, one ends up with a dysfunctional immune system (there is some evidence for this e.g. low cytoxicity of NK cells) which can lead to dormant infections being re-activated as well as leaving people open to opportunistic infections (one of the terms that has been used for a long time in the US is CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome).

Despite the term CFS, CFS patients have lots and lots of symtpoms.

Lyme-type rashes are less common in CFS so if anyone has them, I'd be thinking it's much more likely to be a Lyme case.
If people have rashes, it might be a good idea to take photos of them.
Doctors often tend to be sceptics when people have lots of subjective symptoms but few positive tests. But few can argue with the visual evidence from a photo of a rash.

I have heard of some cases of people who have had a diagnosis of ME or CFS responding well to antibiotic treatment. I've also heard of some people in various countries who have spent a lot of money on various antibiotic treatments and not responded much or at all. Antibiotics were tried by a lot of CFS doctors in the US in the past. Like a lot of things in the CFS area, there is a lot of controvery and uncertainty. A lot of treatments have been proposed. It is probably the case that there are sorts of subgroups.

lostartist

Read if you live in the Republic of Ireland

I am a Lyme’s sufferer in Ireland. I have been sick for a year and a half and only got a diagnosis with-in the last month. I am very concerned over the lack of Lyme’s awareness among the health care professionals, and too the public, in the republic of Ireland. In the early stages of my disease I was actually told by an A&E doctor in Tralee General that, “There is no Lyme’s in Ireland”. Most of the people I talk to are totally unaware that they, or someone in their family, could contract Lyme’s disease while in their own garden. The Irish seem to believe that Lyme’s, if they have even heard of it, is an American disease.

If like me, you suffer from Lyme’s, or have a family member or friend in Ireland who are afflicted with this disease and have experienced unnecessary delay in diagnosis, inadequate or incompetent treatment by Irish health care providers, or general ignorance at the public level, then I ask you to join me in an effort to raise awareness of this disease.
I am currently undertaking to create a catalogue of individual experiences of Irish Lyme’s sufferers. I plan to submit them to the Irish Patient’s Association, with a view to engaging their assistance in urging the Health Board into action to raise awareness of Lyme’s at professional and public levels in the Republic. Please take the time to write down your experience and email it to me at ticktalkireland@yahoo.co.uk Please be aware your testimony may be compiled with others and presented in the near future to public officials. There is strength in numbers.
I know that this will take a great effort. It is especially difficult, at a time of sickness, to invest effort in any but the most necessary of basic daily functions. To even compose this posting has been exhaustive work for me. I have had to work on this posting in stages, taking rest between paragraphs or even sentences, as needs be. But we must focus on improvement in the future. It gives me great grief to think that there could be someone in Ireland at this moment still searching for an answer to their illness, due to lack of information, just as I was myself only a month ago. Maybe even the parents of some poor child, might now be looking for answers. Lyme’s knows no social, economic, gender, religious or ages bounds. Please join with me in this effort. Take the time to email me with your experience or your interest in promoting Lyme’s awareness in Ireland.

LegacyUser

Some great advice here from last 4 posts.
I have Lyme disease since 1995.Went to my nephew's wedding in the States and returned with a life long souvenir
I had weird symptoms for about a year.Pains in small joint, fatigue, continuous Sinus problems.Then one day in Feb 1997 I got Bell's palsy.I thought I was having a Stroke and my husband brought me to the Dr. I was sent to the County Hosp, I had a Brain scan in Ardkeen and was sent home and told I'd be fine in 3 to 6 wks and was put on Steroids
My brother in the states did research for me and came up with Lyme disease.( I had never heard of it). I tested Pos for Under active Thyroid at my G.P's, but they couldn't find anything else wrong so then I attended 2 I.D. Specialists in Dublin( Beaumont and St. James) with Neg results for all tests. In May 2000 I was very ill and referred to a respiratory Specialist in Beaumont Hosp.He was amazing and even with all the neg. tests results treated me for Lyme disease with 1 month's I.V. Roceptin, unfortunately, he referred back to the I.D, Specialists and the whole Saga started again.
In 2002 I joined "Eurolyme" and they helped save my life and sanity, all the Strange Symptoms I had ,made sense to all these marvellous people and with their advice at the time( I borrowed money from my local credit Union) I went to see a Lyme literate Doctor in Switzerland. I still had Neg tests for lyme , but I had Mycroplasma Fermentans ( which you can only get from a tick bite) and vasculitis in the brain( I had a SPECT Scan in Basel Hospital). So even with the Neg results she still Diagnosed Lyme Disease.
Our poor guys here have a lot to learn.
Lyme IS in Ireland in many areas of woodland, but because it is not diagnosed properly by blood tests here or in England, the experts turn a blind eye.
hopefully things will change in the not too distant future, I hoped for that years ago and now 14 years down the line things are no different.
Lyme disease has changed my life completely ,but. then I'm getting older too
I still have flair-ups ,but, with my brilliant G.P. we deal with them as we go.
I cannot advice whether I'll ever be 100% well, but I'm happy with 75 to 85%.When I'm able to get out of bed is a good day, and most days are good right now

sorella

I was about to ask about the correlation between Lyme and M.E; thank you.

There seems to be so much overlap?

I have had M.E for some 40 years; misdiagnosed for 30 of those. No real testing done. Because of bad treatment there are various oher health issues now and my trust in drs where this is concerned is gone forever.

Certainly auto - immune problems ; the only time the Uk drs got really worried was when the Raynaud's became so bad even they had to admit it was real.

We wondered then re lupus; there seems again so much overlap.

Again; thank you for this thread.

And ticks are epidemic in Ireland now; we live in sheep and deer country and I pick them off the cats with great aplomb now, and have had several bites.

Whichever it is, I live with and within it now; and get a huge amount out if life.

Good luck to all.. and blessings

kangaroo wrote: »

Rossiepp - how are you doing?

Most people in society will have antibodies to lots of bacteria and viruses as they will have been exposed to them in their lifetime. Did you have a positive Elisa?

Given you had viral meningitis, I'm wondering whether you might be better to consider that you have a post-infectious syndrome - there seems to be some doubt about your Lyme diagnosis? Despite the term Chronic Fatigue Syndrome, generally CFS is a post-infectious syndrome and people with post-infectious syndromes get the diagnosis of CFS or ME. Much research concentrates on other angles apart from infectious angles; some research and clinical practice does concentrate on infections, but not just bacteria but also viral infections e.g. treatment with interferon, immunoglobulin, various antivirals.

Some researchers feel with CFS or ME, one ends up with a dysfunctional immune system (there is some evidence for this e.g. low cytoxicity of NK cells) which can lead to dormant infections being re-activated as well as leaving people open to opportunistic infections (one of the terms that has been used for a long time in the US is CFIDS - Chronic Fatigue and Immune Dysfunction Syndrome).

Despite the term CFS, CFS patients have lots and lots of symtpoms.

Lyme-type rashes are less common in CFS so if anyone has them, I'd be thinking it's much more likely to be a Lyme case.
If people have rashes, it might be a good idea to take photos of them.
Doctors often tend to be sceptics when people have lots of subjective symptoms but few positive tests. But few can argue with the visual evidence from a photo of a rash.

I have heard of some cases of people who have had a diagnosis of ME or CFS responding well to antibiotic treatment. I've also heard of some people in various countries who have spent a lot of money on various antibiotic treatments and not responded much or at all. Antibiotics were tried by a lot of CFS doctors in the US in the past. Like a lot of things in the CFS area, there is a lot of controvery and uncertainty. A lot of treatments have been proposed. It is probably the case that there are sorts of subgroups.

jcro

Hi r3nu4l
Have a couple of questions.
Are you aware of any doctors who will treat lyme patience
after 3 weeks of doxycycline and [a break of 10 days] then
2 weeks of ceftriaxone without any remission of symptoms.
I have tested pos at your lab for lyme [c6 and blot] and I have painfull
rediculopathy .
Should the 6c or blot go neg when the organism has been sufficiently erradicated.

Thanks
glad to find this thread.