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ticks via hut

'I was treated disgracefully': Fears over possible widespread misdiagnosis of Lyme disease

One woman with the condition is administrating antibiotics herself at home, as doctors have refused to recognise the condition.

A LACK OF awareness among some medical professionals in Ireland could be leading to the misdiagnosis of Lyme disease.

The condition, also known as Borreliosis, is a bacterial infection passed to humans through bites from an infected tick.

These ticks can be found right across Ireland, and are concentrated in the west.

Symptoms include fatigue, muscle and joint stiffness, pain, swollen glands, headache, fever, and in some cases a distinctive “bulls-eye” rash.

Left untreated, the condition can lead to heart failure, Bell’s palsy, joint conditions and nerve damage.

Awareness

Sufferers and support groups believe that a lack of awareness among some doctors in Ireland means that symptoms are not recognised, and can lead to test results being misinterpreted.

One patient, Sarah*, told TheJournal.ie about her illness and revealed she was misdiagnosed for more than two years in Ireland, despite having many of the symptoms.

A diagnosis was manipulated to ensure a hospital inserted a tube to allow her to administer intravenous antibiotics.

“I was given several different diagnoses, ranging from Multiple Sclerosis to chronic fatigue… I was even told that it was psychological and to go home. It’s disgraceful how I was treated,” Sarah said.

Lyme disease Pictured left are the materials required for the IV, while on the right is Sarah after having the IV line inserted. TheJournal.ie TheJournal.ie

She later traveled abroad to undergo further tests in a private clinic, where she discovered she had Lyme disease. She was also told that the condition had become chronic because it was left undiagnosed for so long.

Sarah spent months undergoing expensive treatment, at her own expense, in the clinic abroad.

“I returned home, and I switched to oral antibiotics,” she said. “I had a good GP who was willing to continue with what [the clinic] was recommending.”

However, she was told by staff at her local hospital that “under no circumstances would they look at the diagnosis” she had received abroad, meaning the continuation of her much-needed treatment in Ireland was at risk.

In response to queries from TheJournal.ie in relation to this, the HSE said:

There have been reports of certain private laboratories in other countries who provide a Lyme diagnosis service and unless they are operating to a very high quality, then their results cannot be assured.

Sarah’s condition failed to improve, and she was advised to go back on intravenous antibiotics. This involved having a tube inserted into her chest to allow the drugs to be administrated, a procedure that could only be carried out in hospital.

“I couldn’t tell the hospital that I had Lyme disease. I had to say I had chronic fatigue. Even after getting home I had to source my own saline for the drip,” Sarah explained.

I continued taking the antibiotics for the next twelve months administrating the drugs myself at home. This was all new to me – I went from working in shop to sitting at home administrating my own IV.

“Things are improving,” Sarah said, “I’ve gone from sitting in a wheelchair to being back driving. I’m still just in bed everyday, but at least I’m not a complete vegetable like I could be if this went untreated.”

Picture 2 More equipment used by Sarah. TheJournal.ie TheJournal.ie

“I’m still extremely sick … several other issues have now come up. For example my adrenal glands has essentially been knocked out.”

Sarah’s story isn’t unique. She said many others have shared her experience of being on a merry-go-round of misdiagnosis.

Mary Smyth, information officer with Tick Talk Ireland, a group aiming to raise public awareness of Lyme disease, said some doctors are failing to “clinically diagnose” the condition.

“The blood tests carried out are very hit-and-miss,” she explained, “It’s the same all over Europe.”

One of these is the ELISA test, which can give false-negatives and false-positive readings, depending on certain factors.

File,13964,en The spread of the hard-bodied tick across Europe. HSPC HSPC

Smyth said it could be the case that doctors are carrying out an ELISA test once, finding that it comes up negative, and deciding that the patient doesn’t have Lyme disease.

However, in the early stages of the condition, there may not be enough antibodies in their system to register a correct reading on the test.

A statement from the HSE explained that a two-stage approach is taken when diagnosing the disease – “a sensitive enzyme immunoassay (EIA)  which includes the ELISA test as an initial, screening step, followed by Western Blot”.

The Western Blot is another common test, but is often more accurate.

The statement continued:

The first ELISA is a screening test (these tend to relatively inexpensive) to see if someone may have the disease (if they do not then the result can be relied upon).  If there is a suggestion that they might have the disease, the second stage Western Blot is used as a confirmatory test.  It is important that these tests are undertaken in light of the patients clinical condition

Smyth added that another problem is the lack of Lyme Literate Medical Doctors (LLMD) in Ireland. At the time of publication the HSE was yet to confirm how many – if any – such doctors work in Ireland.

“My husband, who was diagnosed with Lyme disease, goes to four or five different specialists, but they’re all looking after individual problems,” she said.

Smyth believes health and safety officers should begin treating Lyme disease with the same priority as more well-known conditions like Weil’s disease.

A statement from the HSE notes that it undertakes annual awareness-raising on the topic of Lyme disease, most recently between 19 and 25 May this year.

Lyme disease is a notifiable condition in Ireland.

There are thought to be anywhere between 50 and 100 cases per year, but the Health Surveillance Protection Centre (HSPC) concedes that this figure could be higher.

In Europe, the incidence is highest in people aged 30-50 years, but is also quite common amongst children.

The HSPC advises that when walking in grassy, bushy, or woodland areas, particularly in May and October, to:

  • Cover your arms and legs with suitable clothing
  • Use insect repellent
  • Check your skin for ticks every four hours, and children’s skin and clothes regularly
  • Check thoroughly for ticks at the end of the day
  • Remove any ticks as soon as possible. Advice on doing so is available here.

More details from the HSPC are available online here.

*Name has been changed. The identity of the patient quoted in this article is known to this website.

First published 8.30am

Read: Going to be outside this summer? Get protected against Lyme Disease says the HSE >

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    Mute Colin Davenport
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    Jun 16th 2014, 9:04 AM

    Flawed article. Allows one side of an argument to be put forward while by law the hospital cannot comment on their reasons for not accepting the diagnosis. It is very rare for doctors to flatly refuse patients requests of this nature without good reason, if for no other reason than to avoid being sued! And speaking of litigation, surely if the diagnosis is confirmed reliably then the next course of action would be to mount a legal challenge. My suspicion is that there is a lot more to this case than we are being told, and that jumping to condemnation is not a good idea in this context. I don’t like anyone to be sick, and doctors can certainly always learn more, but believing one persons assertations as fact is not good journalism or commenting.

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    Mute See My Vest
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    Jun 16th 2014, 9:37 AM

    Ha ha looking for good journalism on the journal. There’s a gas man.

    52
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    Mute John B
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    Jun 16th 2014, 1:49 PM

    Here here. Most of these patients that suffer chronic fatigue following borreliosis have “post treatment Lyme disease syndrome” and this is how the cdc classifies it. Lyme disease may have been the trigger but ongoing infection or “chronic Lyme disease” is not present. At least so says the world authority on infectious diseases the Centre for Disease Control. I agree that presenting a one sided article suggesting some sort of conspiracy is flawed. It should be balanced with some facts. I do hope this lady finds some way to improve her quality of life as clearly it has had a devastating effect.

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    Mute Tick Talk
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    Jun 16th 2014, 3:58 PM

    I wish I could say that Lyme is as simple as the CDC & IDSA proclaim. We have a mass of information on our site about persistence of infection despite antibiotics, seronegativity & a whole host of others.

    Not saying that one side (ILADS) is right or the other side (CDC/IDSA) is wrong but it’s been known for years that Lyme (borrelia) can be tricky to test or treat. We’re still looking for answers sad to say. http://ticktalkireland.wordpress.com/lyme-links/

    35
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    Mute Avril
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    Jun 16th 2014, 5:14 PM

    I believe it anyway as I have a very similar story, only difference is that I haven’t had treatment. The Infectious diseases specialist in the Mater told me that Lyme is very uncommon in Ireland and that if it is not showing up in blood it is definitely not Lyme disease. This is simply not true. I for one would love to hear the other side of the argument. Rather than flat out denial of the facts.

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    Mute Colin Davenport
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    Jun 16th 2014, 6:38 PM

    So how about, as a compromise that might suit all, the journal.ie invite one of our top infectious disease consultants to present their interpretation of the state of play regarding Lyme disease in Ireland? I would like to read an article of that nature. In general I’m not against new information, or being wrong (god forbid!), but I need to see high level evidence to convince me, especially when talking about long term antibiotic therapy, and unfortunately I’m aware that desperate people can be preyed upon in terms of being convinced to pay for investigations and treatments that won’t help them.

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    Mute Ann Maher
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    Jun 16th 2014, 9:47 PM

    Just walk in my shoes since 1995, Colin. I was at high risk of Stroke when I finally borrowed money in my Credit Union to see a Lyme Literate doctor( L.L.M.D) after been ill for 8 years.Scan in Basle hospital showed that.!!!.Blood tests were done in Switzerland, Germany and the United states, which showed I had Lyme disease, Micoplasma Fermentans and Vasculitis in my Brain.I had all the symptoms mentioned in the HSE website ( from day one)including Bell’s palsy which I got in ’97 . .Still have problems with my face and swallow since!!.Acute renal failure 3 years ago. So, if I hadn’t gone abroad for diagnosis and treatment…would I be alive now ….Who knows.!!

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    Mute Ann Maher
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    Jun 16th 2014, 10:36 PM

    5 dislikes. I’m afraid I agree, i dislike it too.!!!. Who would want an illness that few understand

    33
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    Mute Ann Maher
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    Jun 16th 2014, 10:56 PM

    Yes john, your probably right, IF the patient has been diagnosed and adequately treated in the first place, .. Most here in Ireland, unfortunately haven’t that luxury and end up with complications.!..hopefully , we’ll have improvement in our testing and more Awareness for the public coming from the H.P.S.C.1

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    Mute Colin Davenport
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    Jun 16th 2014, 11:35 PM

    Hmmm given that I only have fragmented facts of what was likely a complex and arduous journey for you, I cannot be sure of how reliable these various diagnoses were, and how useful the treatments were, given you have now developed renal failure. I do worry that many antibiotics, especially when given for prolonged periods, can cause renal failure, as can the contrast dye used in some scans. I worry that your money and hope was misplaced. I would worry the same for my own patients. Ultimately, I will continue to look at the evidence in large studies as opposed to individual cases, and if the evidence mounts for chronic Lyme and a role for antibiotics, I will certainly reconsider!

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    Mute GrandDame
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    Jun 17th 2014, 2:56 AM

    I feel very sad for this lady, I believe she has been given a true diagnosis of Multiple sclerosis and is not coming to terms with it. Instead she has sought a more palatable and curable diagnosis and is likely pumping her money into a corrupt unaccredited clinic abroad who is happy to tell her she has “clinical Lyme”. This has to be the case if she has shopped around in Ireland and not found one infectious disease specialist to believe her. This is likely not a case of misdiagnosis but rather acceptance of the real diagnosis. I’d like to hear her ultimate outcome in several years. I predict thousands wasted on unnecessary antibiotics sourced dangerously from abroad whilst her MS deteriorates as she won’t go for treatment of her real illness in Ireland as she won’t accept it. Poor poor journalism, thought I’d read a daily mail story for a second.

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    Mute Ann Maher
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    Jun 17th 2014, 2:03 PM

    Colin. Renal failure might have been caused by anti-imflamatories that i was prescribed here in Ireland , for my bad Lyme arthritis. My brilliant Renal Consultant here actually said he didn’t know enough about the effects of borreliosis. and the lasting affects on our organs. , but he actually learned a lot from my case.!. and I’ve fully recovered from that. I didn’t EVER have continuous antibiotics. I had one months I.V in a dublin hospital because of serious respiratory problems back in 2000, where I spent 3 weeks there, seriously ill.I only got diagnosed abroad.. and sometimes need a maintenance low dose antibiotic when I get a flair up….I’m now able to work again , with a shorter working day…So sometimes treatment for Lyme disease does work.!Pity it wasn’t sooner though/!!.

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    Mute Ann Maher
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    Jun 17th 2014, 2:05 PM

    Sorry, Diagnosed abroad with follow up treatment here

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    Mute Colin Davenport
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    Jun 17th 2014, 2:35 PM

    So hold on, what exact treatment have you had?

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    Mute Colin Davenport
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    Jun 17th 2014, 3:01 PM

    And what on earth is a ‘maintenance low dose antibiotic’? This genuinely sounds like inappropriate treatment at this point, and is certainly contrary to good medical practice by what you’ve described. Once again, anecdotal stories do not make for good medical decisions. Hopefully the majority of the readers of these comments agree!

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    Mute Ann Maher
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    Jun 17th 2014, 8:05 PM

    I wish you and all Doctors good health.My wish for you all ,is that you never get bitten by an infected tick..!

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    Mute John Phoenix
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    Jun 16th 2014, 8:25 AM

    The more I hear how the medical field (including the hospitals) operate on Ireland the more I’m convinced it’s close to third world country standards.

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    Mute The New Fremen
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    Jun 16th 2014, 8:40 AM

    A lot ofThird world countries health systems would kick the ass off Ireland’s

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    Mute John R
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    Jun 16th 2014, 10:51 AM

    Ireland’s health system for all the complaints about it is not third world. People who make such comparisons obviously know nothing about the third world. There are many health indicators in which Ireland performs very well. Moreover, recent reforms have significantly improved our responses to cancer diagnosis and treatments. However, the concerns about this disease are well founded. The solution has to be science based and an analysis of why we are failing to properly diagnose and treat this disease.

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    Mute Patrick J. O'Rourke
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    Jun 16th 2014, 8:48 AM

    This isn’t the only case of misdiagnosis either. I know of two people having the same due to the inefficiency of the test even after Bullseye rashes. Once you have a negative result then you’re treated like a lunatic for demanding real help. This disease could be a tsunami waiting in the grass. I get bitten every time I’m working in the garden as for some reason the wee feckers love me. So far this year I have been bitten 23 times. I keep a log nowadays and photos of any bite that looks like it’s different. Luckily when I get bitten my system let’s me know immediately with red irritation. I have to check the kids every day too. It seems that ticks that have had contact with pheasants can be candidates for being carriers as well as the known deer blood. They really need to get their act together on the testing side. The medical profession do not like being argued with and proved wrong by mere mortals.

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    Mute Fognostical
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    Jun 16th 2014, 9:22 AM

    Doctors differ, patients die. Someone here in the comments recently recommended taking Thiamin tablets to stop bites so I tried it and it works, takes a few days but it turned out better than sprays and wipes.

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    Mute Rupert McPupkin
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    Jun 16th 2014, 9:26 AM

    Patrick,
    I would just stay out of the garden…

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    Mute Kirby Matt
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    Jun 16th 2014, 10:04 AM

    Not related but had a similar experience of the Irish health experience was also treated like a money cow going from consultant to consultant private hospital to private hospital and have say the quality of neurologist and endocrinology in ireland is joke.

    3 years of muscle twitches, tremors and various other serious life changing symptoms and all I was told by 2 neurologists it’s in my head. So went to London and was diagnosed within 20 minutes of seeing the specialist, treatment costs €21 a month and brought me back to a normal state health wise, consultant was shocked that given my history and the test results over the years that the dopes in ireland couldn’t diagnose me his words.

    I am left with a chronic illness which can be terminal, I’d hate to think what might be if I had not googled and got on a plane to London. By the way the fare,hotel and consultant fee, was still cheaper than seeing a neurologist in dublin figure that one. I would love to tell the journal the hell I went through the Irish health system isn’t broken it’s corrupt and to engaged with health and other types of insurance companies.

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    Mute Daniel R
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    Jun 16th 2014, 10:37 AM

    Hi Kirby
    What did they diagnose in London out of interest?

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    Mute Kirby Matt
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    Jun 16th 2014, 11:31 AM

    Behçet’s disease

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    Mute Denise Longman
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    Jun 16th 2014, 1:09 PM

    HI Kirby – borreliosis has been seen in several cases of Behçet’s disease, admittedly not all, so I don’t want to alarm you.
    But it makes you wonder, when so many Lyme borreliosis infections are seronegative, and the test kits probably miss the most common strains we have in the British Isles (such as garinii), whether about 90% of them are being missed.

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    Mute QtrzRZ6r
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    Sep 1st 2015, 12:21 AM

    Hi Kirby, I know you commented over a year ago, but just wondering how you arrange an appointment with an English neuro; can you refer yourself? Also, what was the name of the neuro you saw (unless you’re not allowed to say). Thanks! :)

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    Mute Petes Tuppence
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    Jun 16th 2014, 8:12 AM

    Surely you should check for ticks more regularly than every 4 years…

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    Mute J. Dunn
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    Jun 16th 2014, 8:22 AM

    I think it’s every four years for snails.

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    Mute Vocal Outrage
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    Jun 16th 2014, 9:11 AM

    If it’s a full body check that could take a while, you’d be doing it constantly if more regular than 4 hours

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    Mute Mary Smyth
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    Jun 16th 2014, 9:27 AM

    4 HOURS!

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    Mute Zozzy Zozimus
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    Jun 16th 2014, 11:49 AM

    If you’re somewhere that you or someone else has picked up a tick, you’ll probably be checking yourself every 4 minutes. These things are grotesque.

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    Mute Tom the Bomb
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    Jun 16th 2014, 3:14 PM

    I see they’ve fixed the typo then…

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    Mute GrandDame
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    Jun 17th 2014, 3:25 AM

    So Sarah has a relapsing remitting disorder which left her in wheelchair and confined to bed most days, she was told she had multiple sclerosis, not a diagnosis a doctor gives lightly and without evidence. Sarah insists it’s Lyme not MS after consulting Dr Google. Sarah attends multiple Irish infectious disease experts who all disagree with Sarah’s self diagnosis of Lyme. So Sarah travels abroad to an unaccredited unrecognized clinic that will happily tell her her symptoms could fit with “seronegative Lyme” ie we have no evidence but you have enough money and desperation we will tell you what you want to hear. Here’s years of IV antibiotics with their own side effects . Meanwhile Sarah’s diagnosed MS continues to deteriorate and she surprisingly doesn’t get better!!
    So where are we now, Sarah has paid a lot of money, put herself through a lot of risk with years of antibiotics and feels no better whilst not receiving the actual MS treatment she needs.
    The great thing about the public health system in Ireland is that the doctors make no money off of you by giving one diagnosis over the other, they practice evidence based medicine… Unlike the clinic abroad.
    I really think the journal should remove this dangerous article. I hope Sarah accepts her diagnosis sooner rather than later.

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    Mute Brigitte Nicholson
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    Sep 16th 2016, 3:45 PM

    @GrandDame: I am afraid you are not as informed as you think you are! Lyme disease can mimic MS. There appears to be scientific evidence that MS is Lyme disease. Seehttp://owndoc.com/lyme/multiple-sclerosis-is-lyme-disease-anatomy-of-a-cover-up/
    http://www.ncbi.nlm.nih.gov/pubmed/15617845
    From my own experience – the doctor abroad who diagnosed Lyme (later confirmed by ID) didn’t benefit from the diagnosis as he wouldn’t have been able to treat me. The Lyme doctors who treated me charged their usual fee of €80 for a consultation 3-5 times a year. Not very lucrative. I bought my drugs from the chemist. By the way, both doctors have Lyme disease themselves.Under the NHS I was discharged after 12 months without diagnosis. Had I not gone abroad, I still wouldn’t have a diagnosis as nobody would have ever considered Lyme disease.

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    Mute Jim Higgs
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    Jun 16th 2014, 12:37 PM

    What a terrible article.

    Lyme disease exists – but is typically an acute illness

    The existence of chronic Lyme disease is controversial.

    There is no evidence for the chronic antibiotic treatment of people with Lyme disease. That is why doctors are bit giving her antibiotics – in fact the studies of antibiotics in this condition all show significant risks.

    It’s all summarised in a recent New England Journal of Medicine review.
    http://www.nejm.org/doi/full/10.1056/NEJMcp1314325

    The review even mentions the
    “extensive publicity as well as misinformation on the Internet about “chronic” Lyme disease, a condition for which there is no clear definition or scientific evidence of its existence, may increase anxiety on the part of patients about the consequences of the illness and may confound assessments of treatment outcomes.”

    Thanks journal for keeping up the myth. Any chance of some responsible articles?

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    Mute Colin Davenport
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    Jun 16th 2014, 1:38 PM

    Great to see a peer-reviewed comment. As a doctor I must say that the more I read this article the more biased and irresponsible it appears.

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    Mute Tick Talk
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    Jun 16th 2014, 4:16 PM

    Sadly it’s not just patients who struggle with Lyme disease & its associated controversies, doctors do too, I always feel sad reading this! http://ticktalkireland.wordpress.com/lyme-links/doctors-with-lyme/

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    Mute Colin Davenport
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    Jun 16th 2014, 6:18 PM

    It is good to see more citations in discussions like these – if the evidence is there then doctors will usually accept it eventually! But the CID citation is a point of view article from 8 years ago whose author serves as a consultant on a company who specializes in, amongst other things, facilitating the long term treatment of patients for Lyme disease. I would like to see more impartial up to date evidence than this.

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    Mute Jim Higgs
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    Jun 16th 2014, 6:21 PM

    Sorry Nicky, giving an opinion piece from 7 years ago does not really address the issues raised in the New England Journal (the most highly ranked journal in medicine) from this year.

    In particular, since 2007 (the year of your opinion piece) – “Several carefully conducted, placebo-controlled, randomized trials of prolonged antimicrobial treatment in patients with persistent subjective symptoms after treatment for Lyme disease have shown a minimal benefit or none and a substantial risk of adverse effects.”

    Your article promotes a treatment for which there is no evidence, and furthermore has shown a substantial risk of adverse events.

    I don’t believe in reducing complex medical issues to 1 sentence responses. Perhaps you should do a little more research into the subject before furthering myths. People that suffer from chronic fatigue, or other chronic debilitating illnesses deserve better.

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    Mute Jim Higgs
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    Jun 16th 2014, 6:32 PM

    “Raphael B. Stricker, M.D., University of California at San Francisco. An investigation conducted by the University found that Dr. Stricker falsified data for a manuscript and a PHS-supported publicationreporting research on AIDS.”

    http://grants.nih.gov/grants/guide/notice-files/not93-177.html

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    Mute hjGfIgAq
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    Jun 16th 2014, 6:35 PM

    Jaysus

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    Mute Jim Higgs
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    Jun 16th 2014, 6:45 PM

    true, Forgery and Penis Enlargement Clinic. Couldn’t make it up. Doctors, huh?

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    Mute hjGfIgAq
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    Jun 16th 2014, 10:36 PM

    Mad. Just to note as well in case people are wondering, that report wasn’t used in the above article.

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    Mute Jim Higgs
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    Jun 17th 2014, 1:14 PM

    Yes, but this “doctor” is the president elect of the ILADS group – the global cheerleaders for “chronic lyme disease”. This group says it is there to help people with chronic Lyme disease, however, they are all doctors whose income depends on diagnosing people with a disease, and then charging them for expensive tests and treatments. A trip to one of these doctors costs about US$ 650. Of course they want to promote the idea that anyone with any symptoms has chronic Lyme disease. They want to increase their patient numbers, increase their incomes.

    The easiest thing for any of the Irish doctors treating the unfortunate woman in the article would have been to go along with her. Charge her for visits. Charge her for her antibiotics. She would have been happy. The lack of progress could be blamed on the “disease”, the treatment could be intensified. Eventually if she died, at least her family could say that the doctor did everything (and made quite a lot of money in the process). People are generally much happier when you tell them what they want to hear.

    One problem with this is that it is unethical. Eventually a patient would be harmed by this practise. A family would eventually complain. The façade couldn’t continue forever.

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    Mute Hilary Cullen
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    Jun 17th 2014, 4:32 PM

    Jim Higgs, even the CDC states 20% of acutely treated Lyme disease sufferers still remain symptomatic after antibiotic treatment -they just do not know why.In 2012,the NIH sponsored Embers study showed spirochetes remaining in the tissues of monkeys after several months of high dose antibiotic treatment and studies there continue. Three weeks ago Dr Kim Lewis announced results of persister cells in Lyme patients.Thats the guy who cured MRSA by the way.The young lady above was not an acute case and sadly,this is her truth.

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    Mute Jim Higgs
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    Jun 17th 2014, 6:32 PM

    1. I don’t think he “cured MRSA”. He hasn’t published anything on “persisters” in Lyme disease. He has received a grant to do further research.
    2. There are gaps in our knowledge of everything. But the CDC also state “studies have not shown that patients who received prolonged courses of antibiotics do better in the long run than patients treated with placebo”. This means we need more research, not using treatments have have been proved not to work. (while making money from treating patients privately)
    3. One monkey study does not mean that much. There have been thousands of articles published about Lyme disease. The results of 1 paper in 15,000 have to be taken in with the 14,999 others. That is why it is better to look at a review article from a reputable journal, such as the New England Journal of Medicine.

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    Mute Hilary Cullen
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    Jun 17th 2014, 7:08 PM

    1.Dr kim Lewis announced his first results of finding persister cells in Lyme at ASM 2014 last month.Furthermore,putting down his discovery that MRSA had persister cells causing its resistance to antibiotics rather than mutated bacteria shows some arrogance.The fact that he has a treatment for this which he hopes to use for Chronic/Late Stage Lyme also is just one thing that is going to bring hope to a long suffering community.
    2.In the case of a long term chronic bacterial infection being something that slips through one of those gaps you are talking about-what else would you throw at it?
    3.There are plenty more peer reviewed animal studies showing persistence of Lyme after treatment not just the one.I choose The Embers study-which is ongoing-because it is NIH sponsored and one that the American government will have to heed not ruminating doctors in their living rooms

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    Mute Colin Davenport
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    Jun 17th 2014, 8:43 PM

    Using the phrase ‘cured mrsa’ really indicates that you do not understand what you are talking about in terms if health care matters. A lack of understanding of a condition does not justify treating it with medications that have been shown in robust trials to make no difference. I haven’t seen any data so far to make me think that the concept of antibiotics for post Lyme syndrome is anything other than false hope for desperate people. Look, randomized control trials, published in reputable journals, are what’s needed, not preliminary data, hope and theories.

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    Mute Hilary Cullen
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    Jun 17th 2014, 10:22 PM

    Oh for goodness sake!The compound he used eradicated the MRSA in lab mice with no ill effects on them and yes ,trials will have to ensue on humans then.You avoid the point Colin Davenport,Dr Kim found persister cells in Lyme patients.With persister cells a disease becomes antibiotic- resistant and your “robust” trials become pointless. ,Antibiotics will only alleviate never eradicate the infection.Still some relief of pain is better than constant unremitting pain and the progression of good science is never false hope.

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    Jun 17th 2014, 11:11 PM

    He hasn’t “cured” MRSA until it patients are cured. I don’t think even his mother would claim that. He has done some significant research on MRSA would be a better statement

    He has not published anything on Lyme disease. Presenting research at a conference is not quite the same as publishing your work. It is not peer reviewed to the same level. Do a search on pubmed to see all his published papers. I don’t doubt that he has made some interesting findings. But his research has to be added to all the other research published by all the other hundreds of groups doing research on Lyme disease.

    It may be very helpful research, but at the moment, the best evidence is that prolonged antibiotic treatment does not improve the lives of those with chronic Lyme disease.

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    Mute Colin Davenport
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    Jun 17th 2014, 11:14 PM

    The MRSA point that you brought up is pretty apt in the wider context of what you’re trying to say – Preliminary data does not a clinical condition or a treatment make, no matter how much you may want it to. You’re describing data presented at conferences and studies in progress. Have you any idea how much preliminary data like this ends up being incorrect, or falsified, not reproducible or not transferable to clinical practice? Basically, while it’s all genuinely interesting research it does not validate the commonplace existence of Lyme as a chronic infection, nor does it justify the frequent calls for antibiotics seen on these very comment pages. In the same way that I admit I may be wrong and will happily look at new evidence when it comes along in published form, I would suggest you consider that just maybe the majority of experts and authorities who do not recognise post Lyme disease symptoms as a chronic infective condition are correct.

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    Mute Hilary Cullen
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    Jun 17th 2014, 11:56 PM

    When the experts are the IDSA.The same guys who have stubbornly refused to revise their Lyme guidelines to keep up to date with recent studies.Or the CDC, who refused to believe until last year that Lyme was infecting ten times the number of people it had been in America-I think not.

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    Jun 18th 2014, 12:11 AM

    I note the gentle correction on MRSA.Thank you.Dr Kim is a NIH favourite though and if this research is published and validated,it will quickly rise above the rest .As for the best evidence remark- well that only depends on what science you cherrypick Jim Higgs.The best evidence should be the voices of thousands of Lyme patients across the internet and media but we do not live in that kind of reasonable world.

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    Jun 18th 2014, 7:01 AM

    Nope, best evidence is large scale RCTs and meta-analyses of same. If we believed the voices of thousands of people then we may as well accept that vaccines cause MMR and homeopathy is a valid branch of medicine.

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    Jun 18th 2014, 7:03 AM

    (Correction) – vaccines like MMR cause autism

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    Mute Seán Ó Briain
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    Jun 16th 2014, 10:58 AM

    I think the overall issue of chronic fatigue needs to be addressed by the HSE. So many people suffer because of it. There needs to be a dedicated clinic in Ireland, rather than being put on the HSE merry-go-round, where nothing ever happens.

    Education is key also – People think “Ah, sure you’re just a bit tired… We’re all tired”. It’s not tiredness. It’s chronic exhaustion, lack of mental clarity (brain fog), typically followed up by an array of food intolerances, depression, and then some. Everything that once allowed you to live a normal, happy life is taken from you.

    So many people have taken their life because of it and I know why. They feel like nobody listens to them, and the healthcare system can’t and won’t do anything for them. Apologies for the link to the daily mail, but you’ll get to see the pressure it puts on people’s lives: http://www.dailymail.co.uk/health/article-32448/ME-drove-daughter-suicide.html

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    Mute Ann Maher
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    Jun 16th 2014, 11:27 AM

    Sean, many people with Chronic fatigue/M.E may have Lyme disease ..

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    Jun 16th 2014, 5:00 PM

    Yes I’m aware of this, but Lyme disease isn’t the only cause of chronic fatigue. A lot of genetic factors play a role, from poor methylation cycle due to defects with the MTHFR gene, to an inherent inability to detox heavy metals. What the Irish public need however is a support clinic, that will show care and understanding – instead of being ridiculed and passed around from specialist to specialist.

    So many people suffer silently.

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    Mute Denise Longman
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    Jun 16th 2014, 12:37 PM

    This is not just happening in Ireland – in the UK 12,000 Lyme patients and friends have signed an ongoing petition (see UK Lyme Petition on i-petitions.) 2 protests were held in mid May in Manchester and London, demanding better tests and extended treatment. This coincided with rallies and protests across the world for the World Wide Lyme Protest movement – e.g. in Germany there were 5 cities holding protests, in the USA about 40 of the states.
    Lyme borreliosis is carried by ticks and probably by horseflies and it’s everywhere – in June 4 cases were seen from bites acquired in back gardens in the East End of London. We are shocked by the lack of warnings, and the general ignorance of this plague, which was known to be a widespread problem in the UK and Ireland as long ago as 1993. Certain scientists with influence on governments have denied that the disease can be persistent and chronic, when tens of thousands of patients are finding out that the opposite is true and having to fund their own treatment. We are in the middle of the worst health scandal for a hundred years

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    Mute Sean Armstrong
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    Jan 6th 2015, 2:06 PM

    The symphisiotomy scandal? Neary and his hysterectomies in Drogheda? Organ retention in the UK? The Nuremberg trials? Homeopathy? Wakefield and his lies about vaccines?

    Insight, please.

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    Mute John Xavier
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    Jun 16th 2014, 8:58 AM

    Its not lyme disease , its PSYCHOSOMATIC , sometimes when a disease is in the media and you hear about the symptoms, its only natural that you think you have it

    http://www.youtube.com/watch?v=ZDkrNKMVXHc

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    Mute J. Dunn
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    Jun 16th 2014, 9:19 AM

    I think I have psychosomatic! What are the symptoms?

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    Jun 16th 2014, 9:31 AM

    Indeed, John.

    Do you think the bullseye rash is all in the mind too?

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    Mute Peter Maguire
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    Jun 16th 2014, 10:19 AM

    “Bulls Eye Rash” or erythema migrans.
    Symptoms: Fatigue, chills, fever, headache, muscle and joint aches, and swollen lymph nodes

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    Mute Ann Maher
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    Jun 16th 2014, 11:32 AM

    Bell’s palsy, Heart problems,Thyroid problems, Renal failure to name a few other symptoms !!This is a serious illness, when left un-treated.!!!

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    Mute John Xavier
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    Jun 16th 2014, 1:50 PM

    Obviously the Simpsons reference was lost on ya’ll. For shame……

    http://www.tvfanatic.com/quotes/characters/miss-hoover/page-2.html

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    Mute Marianne Wims
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    Jun 16th 2014, 2:29 PM

    John Xavier, maybe a Curb your Enthusiasm clip would be more accurate: https://www.youtube.com/watch?v=PQcrENv9_80

    I was amazed watching an episode last year that Larry David seems to know more about lyme disease than most Infectious Diseases doctors here! It can be incredibly serious and debilitating if let get to chronic state. Misdiagnosis and mistreatment here is ruining lives, most have to go to America or Germany for adequate treatment, criminal.

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    Mute Brigitte Nicholson
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    Jun 17th 2014, 1:22 AM

    Would you say that a pericardial effusion is psychosomatic? Or chronotropic incompetence, severe dysautonomia with postural hypotension, peripheral neuropathy (confirmed by absence of reflex and nerve/muscle conduction tests) and lesions in the brain are psychosomatic? I had no idea what was wrong and I was discharged after 12 months without diagnosis. I consulted a physician abroad and was shocked when I was presented with a positive Elisa. I didn’t know anything about Lyme. Elisa test was confirmed by a positive Westernblot and Elispot. All psychosomatic?

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    Mute Jim Higgs
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    Jun 17th 2014, 8:35 AM

    Certainly not. However those real and significant complaints you have can have literally hundreds of causes.

    The fact that you have a positive ELISA test is just chance, and does not mean that your symptoms are connected.

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    Mute Brigitte Nicholson
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    Jun 22nd 2014, 11:12 PM

    Well, I was thoroughly investigated by several doctors and no other cause has ever been found. Besides, all my symptoms are consistent with Lyme and I had several tick bites. The positive Elisa was confirmed by a Westernblot and 3 Elispot tests. Even Infectious Diseases confirmed the diagnosis of LD. Coincidence? I would think not.

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    Mute Conor Power
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    Jun 16th 2014, 10:39 AM

    Love this country, but I dread the day I will have to rely on the HSE for anything. Extended family have two nightmare misdiagnosis case.. one was Lyme disease. When I was given the details of the symptoms it was one of the first things that came to mind as the guy worked outdoors and I remember reading about the disease in a Junior Cert science book.

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    Mute Darren Norris
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    Jun 16th 2014, 10:07 AM

    This is very true, I am aware of mis diagnosis of Lyme here, and Gp’s and specialists pumping people with pain killers etc for months.

    Maybe a training course in it would help

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    Mute Joanne Drayson
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    Jun 16th 2014, 4:38 PM

    The controversies about Lyme Disease (Borrelia) have waged for over 30 years and untold misery has ensued but science moves on and will be listened to eventually.

    The Infectious Diseases Society of America guidelines on Lyme disease are followed by most medical authorities around the World but have not kept abreast with the emerging science.

    The Dept of Health and Public Health England were involved with the James Lind Alliance in reviewing the guidance. There were many uncertainties in the guidance – these are now documented on NHS Duets database and also on charity Lyme Disease Action website http://www.lymediseaseaction.org.uk/
    PHE are working with LDA to update their guidance and now direct some enquiries to LDA website.

    Unfortunately the testing for Lyme Disease is indirect and as with other diseases this can be problematic, as discussed in this recently published article by Prof Perronne an Infectious diseases doctor at a hospital in Paris which explains the problems with testing.
    http://journal.frontiersin.org/Journal/10.3389/fcimb.2014.00074/full

    The fact that Borrelia is documented in the late stages of illness means there should no longer need to be a debate as to whether there is such a thing as Late or chronic Lyme Disease
    Here documented from the literature are 123 Lyme (Borrelia) Focused Autopsies
    http://vimeo.com/user27613099

    Recently CDC and NIH held a seminar on persistence we await the official report but from reports back of those who heard the seminar it sounds very promising that persistence is being more widely accepted. – ‘Linden Hu, who did the NIH xenodiagnosis work, was appointed to sum it all up –he said that every experiment no matter what showed persistence, so we had better look at it and its relationship to persistent illness.’

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    Mute Anne Wims
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    Jun 16th 2014, 4:51 PM

    May I ask a serious question of Colin Davenport (if you really are a doctor). If you or a loved one were diagnosed with “Chronic fatigue syndrome” or “Fibromyalgia”, would you just accept the diagnosis? Would you not want to find the cause? Would you accept that you will probably be disabled, in pain etc for the rest of your life? If you tested negative here for Lyme, yet positive in FOUR different labs abroad, which tests would you go with? Four to one………it’s a no brainer!

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    Mute Jim Higgs
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    Jun 16th 2014, 6:42 PM

    The problem is Anne, that the Lyme test is problematic. You could send off random samples from healthy people sitting beside you in the bus, and lots of them would be “positive”. A “positive” test does not mean that someone has anything wrong with them, it just means that they have had an exposure in the past. It really doesn’t matter how often a pretty useless test is repeated, they are all measuring the same thing.

    I have some idea of your frustration. You see a loved one suffering, unable to move, in pain, and doctors do nothing, suggest nothing, and seem to want to pass you off to someone else.

    I just want to warn of the people who exploit people who are desperate. Some people make a very good living from diagnosing people with “chronic lyme disease”. It is rare that any of these doctors or labs or not-for-profit entities. They have an interest in recruiting patients, and doing tests.

    I recommend “Lyme Inc.” from Forbes for an alternative view of the Lyme disease controversy.
    http://www.forbes.com/forbes/2007/0312/096.html

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    Mute Colin Davenport
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    Jun 16th 2014, 7:14 PM

    This is, unfortunately, exactly the problem. A desperate desire for an answer and a cure does not necessarily mean either will arise, and there are plenty of labs, and even disreputable health care professionals, who will take advantage of such a well-meaning desire. Doctors deal with people who have difficult to diagnose diseases, and people whose diseases haven’t been described fully yet, and people whose symptoms are psychosomatic. It can be very difficult to tell the difference between them. So we go with the evidence, the international consensus, and we do our best to be open-minded despite the time pressures and litigation risks we work under. We have no vested interest in denying a disease, but we do have to occasionally tell people that what they are looking for just isn’t there. My concern with this article from the journal is that it provides a single side of an issue, with no counterpoint from an accredited and impartial specialist, and will undoubtably have some of its readers matching symptoms and demanding treatment to a condition whose very existence is in doubt.

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    Mute Anne Wims
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    Jun 16th 2014, 7:17 PM

    Perfectly true Jim, if you’re talking about the ELISA test. Many people will have antibodies yet asymptomatic. But…………..positive tests with corresponding symptoms??
    BTW, I’m not for a minute complaining about individual doctors or the HSE. It’s the frustrating lack of up to date knowledge that annoys me. Even more annoying is the closed mind attitude of some of the most “respected specialists”. They’re using knowledge that’s outdated.

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    Jun 16th 2014, 7:31 PM

    That doesn’t answer my original question to you Colin. What would YOU do?
    As for “dodgy” labs and “disreputable” health care professionals”…………that’s the ultimate cop out! Surely several positive tests from so many different labs, in different countries should set off alarm bells.
    As a former health care professional myself, I do believe you when you say you’ve no vested interest in denying a disease. I do think most doctors are well meaning, but unfortunately some don’t keep their knowledge updated.
    One thing I would ask, please do not use the word “psychosomatic” in connection with this awful disease. That is adding insult to injury.

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    Mute Jim Higgs
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    Jun 16th 2014, 7:42 PM

    The problem with symptoms is that they are non specific. A headache could be just a headache, or a brain tumour. Fatigue, or join pain are very common symptoms.

    On the other hand, the acute disease can cause very specific problems – like interfering with the heart rhythm. If this was present, with a recent history of a tic bite, the disease is pretty much diagnosed, even without a blood test.

    The chances of having non-specific symptoms and a positive test are pretty high. Most of that is due to chance.

    The problem in doing a test in someone with non specific symptoms, is that the result isn’t useful.

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    Mute Colin Davenport
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    Jun 16th 2014, 7:45 PM

    Once again, making medicine too personal is part of the problem. It’s one of the reasons doctors are not supposed to take care of themselves, sometimes judgements calls have to be impersonal and impartial. What I would do does not necessarily correlate with what should be done, and should only have a very limited bearing on healthcare decisions. With regards to updated knowledge, so far the most up to date citations in this comment list (NEJM, CDC guidelines) have been more in keeping with the established point of view on the concept of chronic lyme disease. And unfortunately, as can be seen in the comments regarding the CID citation, disreputable health care professionals can be a serious problem, so I do not use this concept as a cop-out or regard it as one. Finally, psychosomatic symptoms are a real problem, and ones that in many ways can be worse than diseases with an obvious physical component. I do not say post lyme-disease symptoms are due to these symptoms, nor do I belittle them. Ultimately, they will be in the differential for patients with vague symptoms that do not correspond to known organic disease processes. To do otherwise would ultimately lead to ordering unnecessary tests and carrying out unnecessary, and occasionally harmful, treatments.

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    Mute Anne Wims
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    Jun 16th 2014, 8:59 PM

    Again I find myself agreeing with some of what you say Jim. Of course, headaches, fatigue and joint pains can be non specific.But where you have all of the above, plus interference with heart rhythm, plus seizures, plus…………many other symptoms after the initial month of Doxy?? What then? Shrug your shoulders, leave the patient to rot or use your common sense and treat long term?

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    Jun 16th 2014, 9:21 PM

    I take this as the ultimate cop out then Colin! You remain impartial, don’t get personal, stick to the status quo, keep your head firmly in the sand. That’s the sure way to get to the top, isn’t it. Enjoy it while you can, and I hope neither you or your loved ones ever succumb to chronic Lyme.

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    Jun 16th 2014, 11:26 PM

    Ah sure I can always treat it with homeopathy anyway.

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    Mute Jim Higgs
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    Jun 17th 2014, 9:46 AM

    So you have someone who continues to have symptoms, despite a course of antibiotics.

    A thought might be that the diagnosis isn’t correct, and that continuing the antibiotics is at best useless, and at worst may harm.

    I can understand why you might feel drawn towards continuing antibiotics when nothing else is being offered.

    A problem is that everyone can follow the “there’s an infection, treat it with antibiotic” logic. This is an oversimplification of a very complex problem, which is sold to people who are desperate. Sometimes doctors don’t have the answers, and don’t seem helpful. However placing all you hopes on a dubious diagnosis often does not help. There’s often a range of coping strategies, from physiotherapy, to occupational therapy and more, which can provide real practical help.

    What I would do in the case, and what Colin might do – is he would never let a dubious doctor send off a vague nonspecific blood test in the first place. It just opens a Pandora’s box of uncertainty and pain.

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    Mute Anne Wims
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    Jun 17th 2014, 9:49 PM

    Jim, I seem to find myself agreeing with you in almost everything. In fact if this was happening 15 or so years ago, I’d be backing you 100%. I’m someone who avoided antibiotics unless it was a life or death situation. In fact, I’m still uncomfortable with long term antibiotics. I completely understand the adverse effects, but then……….hmm, don’t you prescribe long term for acne??
    So to get back to the original discussion………..chronic Lyme or something else? If someone is robustly healthy (on paper) for their age, ie normal scans of every organ, yet highly positive tests for Lyme and co-infections from several *foreign* labs, despite intermittent courses of antibiotics, still symptomatic, with signs of severe immune dysfunction……………what do you do? Wring your hands and say medicine doesn’t have all the answers?? Wouldn’t it be more sensible and productive to get together with the so called *dodgy* doctors and clinics who admit they don’t have all the answers either………………try to solve this puzzle together?? I’d ask you, how much do you know about the *vague, nonspecific* tests? Do you have personal knowledge of those dubious clinics/labs? Have you visited one of those facilities, had discussion with any of those doctors? I’m not in any way trying to be argumentative for the sake of it!

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    Mute Jim Higgs
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    Jun 17th 2014, 11:25 PM

    The problem with the “dodgy doctors” is that they claim to have the answer, and are happy to charge people for expensive tests and unproven treatments. I don’t think they have the answer. Of course I might be wrong, but, at the moment the best evidence that I can find supports that position. If new studies come along that challenge that, great. That’s how science works.

    I’m not sure what I would do. Sometimes people find it great to have a name, a label to call something. Chronic fatigue syndrome has such a bad connotation to it. It is always nicer to know your foe. I don’t know if it’s better to get the wrong diagnosis and be happy with it, or not have any diagnosis and fight the unknown. I couldn’t look someone in the face and lie to them though, just to give them a diagnosis.

    I do think I would try and get therapy, physiotherapy, OT, pain therapy. If I needed anything I would do it.

    Just a word on psychosomatic illnesses – I’m not suggesting that what this person or you have is psychosomatic. But psychosomatic diseases are real. Every large hospital in Germany has a department of psychosomatic medicine to treat people. We shouldn’t judge someone with a psychosomatic illness. It doesn’t make their suffering any less real that the cause is slightly different. We all experience life differently. I hope that this doesn’t offend you, it is not aimed in that way.

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    Mute Jim Higgs
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    Jun 17th 2014, 11:48 PM

    In relation to the labs, just to give you an idea of the size of this business, one paper I read said that 485 million dollars was spent on testing for Lyme disease in the US in 2008 in commercial labs. (Just commercial labs, not the university hospital ones). http://www.ncbi.nlm.nih.gov/m/pubmed/24879782/

    That’s a half a billion dollar a year industry. They have a significant interest in drumming up more and more complicated (and expensive) tests. I am not naive enough to believe that these for-profit companies are interested in Lyme disease for a scientific or charitable reason.

    Medicine is a business in the US. We need to be careful that they don’t invent new diseases to keep doctors and drug companies in business.

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    Mute Sophie Wynne Evans
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    Jun 17th 2014, 12:43 AM

    I think that many people are unaware that Lyme disease is like any other infections caused by a spirochete bacterial infection eg Syphillis, African Relapsing Fever, Yaws, Leptospirosis. That is, it has various stages,relapses and remissions, and the earlier caught the less systemic and deep the infection becomes. I think many doctors seems ignorant of this fact and often think the same treatment that worked one month into the infection will treat someone who has had it for three years. Not so. Left to spread to secondary and tertiary stages it becomes much more intractable and systemic and the treatment needs to match that ferocity.

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    Mute Jim Higgs
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    Jun 17th 2014, 10:00 AM

    I’m pretty sure that most specialists know that Lyme disease is a spirochete.

    Only Syphilis and Yaws have secondary and tertiary stages. The other diseases u mention don’t “spread” to secondary or tertiary stages. Yaws, even at a secondary/tertiary stage, is cured by a single injection of antibiotic.

    Relapsing fever can be cured after a single dose of antibiotic.

    Leptospirosis causes a severe illness, that can take months to recover from. It doesn’t cause secondary or tertiary stages.

    It is pretty clear that these diseases are distinct. Just because AIDS and the flu are caused by viruses, doesn’t mean that the treatment is the same. Generalising some information from Syphilis to Lyme disease because is suits some peoples idea of a treatment (long expensive antibiotic treatment), means one has to ignore the other spirochete diseases that might be more relevant.

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    Jun 16th 2014, 8:08 PM

    Nicky, it is very disappointing that your journalism consists of presenting a personal account, which while very powerful and valid in expressing the challenges faced by the patient, is undermined by your failure to provide factual reference. You cite an out of date article which was easily identified by commentators to be written by a discredited source, which when highlighted to you, your further commentary was “jaysus”. You do a disservice to those living with this condition to provide such a flawed representation of the facts, and to be so complacent regarding your own poor research skills. It must have been a harrowing experience for this patient to give this account, the least you could have done is made your contribution to the article factually robust.
    Anne Wims, it sounds like you have personal experience with Lyme Disease. For that very reason, it is surprising that you would belittle psychosomatic illnesses by considering a comparison to them insulting. It is sad that anyone would suggest that one chronic illness trumps another.

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    Mute Anne Wims
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    Jun 16th 2014, 9:09 PM

    I reiterate, inferring that chronic Lyme disease is psychosomatic is an insult. It is a very real physical disease. One chronic disease doesn’t necessarily “trump” another. There’s a big difference between psychiatric and psychosomatic.

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    Mute Muirne Spooner
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    Jun 16th 2014, 10:08 PM

    “There’s a big difference between psychiatric and psychosomatic”. Are you able to reference that comment Anne? The internationally recognised standards such as DSM-V (Diagnostic and Statistical Manual of Mental Disorders) under which classifies all mental health conditions includes somatic symptom disorder ( DSM IV TR is still operational in some practice, here psychosomatic disorder is classified as somatoform disorders) in its classification, as do ICD 9 300.82 and ICD 10 F45.1.
    It would erode confidence in your opinions by making such a statement without any evidence. Mental disorders are stigmatised enough without dubious assertions as to whether they are “psychiatric” or not. Look forward to hearing the evidence though, thanks.

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    Mute hjGfIgAq
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    Jun 16th 2014, 10:14 PM

    That report was posted as a small contribution in the comments section, and, as you can see, was not included in the above article.

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    Mute Muirne Spooner
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    Jun 16th 2014, 10:22 PM

    Nicky, you miss the point-In your original article, there were no citations of any seminal articles from peer-review publications, nor were any clinicians interviewed. The HSE is not a representative of medical opinion. Copying in the first Google link you find when citations are requested, without even checking that it was a legitimate source , subsequently expressing surprise at the former, does not journalism make.

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    Mute hjGfIgAq
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    Jun 16th 2014, 10:28 PM

    It was a contribution to the debate, as I said the report in question was not used to the article, and it wasn’t used in the comments section to back up any points made – the article outlined one person’s experience, rather than triumphing antibiotics as the cure for lyme disease. If you want to discuss this any further, I’m on nicky@thejournal.ie

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    Mute Muirne Spooner
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    Jun 16th 2014, 10:41 PM

    If this article was meant to be an opinion piece outlining one person’s experience, why seek commentary from TickTalk and the HSE but not from specialist clinicians? No need for further discussion, you haven’t been able to justify here why citing a discredited source “add(s) to the debate”, or the inherent imbalance in the article so I don’t think email correspondence would vindicate the flaws. Thanks for your response.

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    Mute Tick Talk
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    Jun 16th 2014, 9:05 PM

    If folks are looking for peer reviewed articles we have loads on our site – there are so many that I have’t even finished updating them yet. http://ticktalkireland.wordpress.com/lyme-links/chronic-lyme/

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    Mute George Masterson
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    Jun 16th 2014, 12:47 PM

    Afaik if you know you have had ticks feeding on you , the wisest course of action is to go to your doctor and ask/demand a 30 day course of doxycycline as prophylaxis. Prevention in the case of this horrible disease is always better than cure

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    Mute Jim Higgs
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    Jun 16th 2014, 7:44 PM

    The prophylaxis is a single tablet. Not 30 days. Considering the amount of tic bites most children who grow up in the country get, the chances of getting Lyme disease are very low.

    Perhaps best off going to a doctor…

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    Mute Denise Longman
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    Jun 16th 2014, 11:45 PM

    http://www.poughkeepsiejournal.com/story/opinion/valley-views/2014/06/14/lyme-disease-patients-chronic/10533911/

    Holly Ahern, associate professor of microbiology at State University of New York Adirondack in Queensbury, writes:

    “…a large and significant body of scientific evidence published in peer-reviewed medical and scientific journals indicates otherwise. These studies provide valid evidence of pathogen survival after antibiotics and poly-microbial infection as a reasonable explanation for why a significant proportion of patients with Lyme disease do not recover after the recommended two-four weeks of antibiotics. There is considerably more scientific evidence in support of this thesis than exists for the opinion that persisting symptoms after short-term antibiotic treatment are related to “residual damage to the immune system.”

    http://www.poughkeepsiejournal.com/story/opinion/valley-views/2014/06/14/lyme-disease-patients-chronic/10533911/

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    Mute Jim Higgs
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    Jun 17th 2014, 8:31 AM

    The ploughkeepsie journal would not generally be considered a reliable source of medical information.

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    Mute michael leonard
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    Jun 17th 2014, 11:24 AM

    The Leader of the Green Party in Canada , she is an MP for my daughter in Victoria B C
    is pushing really hard to get the Disease recognised and prioritized for Medicines etc .

    http://elizabethmaymp.ca/legislation/c-442

    in Canada a friend of hers who has suffered for many years has had to get their meds from Seattle
    through their girlfriends private insurance .
    He has only recently been able to ski again after many years fighting this terrible disease

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    Mute Colin Davenport
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    Jun 17th 2014, 1:54 PM

    This is not evidence, it is a story. Look for evidence when making medical decisions. Evidence equates to well performed, scientifically robust studies which can stand up to intense examination.

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    Mute graham bolger
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    Jan 4th 2015, 8:56 PM

    there is no coincidence here, the HSE is a murdering machine, i know because im lying in a bed right now at 34 years of age in agony, i’ve been treated disgustingly since 2008. it’s now 2015 and i have a full blown chronic disease that has dissolved my muscles away. i am in AGONY. everyone i ever loved is gone & my case has been closed by the HSE because i would NOT accept they’re psychiatric diagnosis of “SOMATOFORM DISORDER” which basically state’s i am a hypocondriac. how can a person with full blown chronic disease be a hypocondriac? i think not. the HSE and the world medical council are killing people everyday and they know it. the ignorance of the medical personal comment’s on this page is sick. They dont even realise they are working for a billion dollar industry that does not care to find a cure or a diagnosis for anything, How will they make they’re billion’s & trillion’s of dollars then ? Lyme disease is a worldwide epidemic, it bring’s on motor neuron disease, it mimic’s multiple sclerosis when in fact the person has chronic Lyme disease, i’ve researched this for almost 8 years and i “DO NOT” take my research from the general amount of ignorant cold soulless clinical so called medical professional’s out there who dont even KNOW MEDICINE, i take my research & answer’s from the very people who are dying from this horrific Disease & the very small amount of Brave Doctor’s who are coming out and saying “YES, IT’S REAL” , “yes, your not crazy” , “this person was diagnosed with M.S. when they in fact have advanced lyme disease , “this person has motor neuron disease brought on by lyme borreliosis” , the list go’s on and on and on and on. I am sick and tired of all these rookie doctor’s showin up on forum’s like this and using they’re big medical word’s so none of us can understand what the **** they are talking about, when in fact it’s so obvious if they talk in plain English , they know they’re argument is flawed in all way’s, they are a disgrace & they are killing people like me and you and im finished with all this medical bullshit because it cost me my life tryin to diagnose myself online when the H.S.E. just didn’t bother to take my human right’s under the irish constitution into consideration. I most probably have advanced Lyme disease, it’s called the great imitator, borreliosis is “the most clever” bacteria out there, hiding in our body’s, it “ACTUALLY HIDE’S IN PART’S OF OUR BODY THAT ARE HARD TO MEDICALLY PENETRATE, when it senses trouble !?!?! is this medical fiction Gold-dust or what ?!?!?! medical “NON- fiction gold-dust or not”, it’s cost me my life, my sanity, it made me become homeless when i couldnt take care of myself & my family thought i was faking an illness thank’s to our so professional medical & psychiatric service in ireland, i turned into a full blown alcoholic & drug addict, trying to self medicate myself for “UNBELIEVABLE IMPOSSIBLE CHRIONIC PAIN”, THE TRAUMA that the H.S.E. caused me and all those around me who i love so dearly, is purely DISGUSTING. i started feeling sick in late 90′s when i used to go camping in the irish wood’s all the time, there were tick’s everywhere carrying this deadly disease, but it’s “STILL NOT RECOGNISED BY THE IRISH MEDICAL COUNCIL as a Chronic Disease” !!!!. then i got chronically sick in 2008, went through hell of being thrown out of every hospital in ireland told it was all in my head, H.S.E. finally closed my case, !!! “they CLOSED MY CASE” !!! how evil can you get, and they sent me home to DIE. and here i am living in a room alone, with no friend’s calling in to help me, with my family still thinking im faking this, here i am with bone’s dislocating all over my body every night & day, here i am, a 34 yr old cripple who was once a talented full of life musician songwriter/singer , here i am, hearing the haunting echo’s of my daughter’s voices & distant memory’s of a good life, which feel like it all never existed in the first place, for how could such a good life, turn into such hell, with solicitor’s & legal people everywhere telling us that they will help us against malpractice, yet they wont “COME NEAR MY CASE” , to complex and “NOT ENOUGH EVIDENCE” they say !!!!!!!!!!!! so what am i left with ?!?!?! im left with what i have and have had for almost 7 years now, a death sentence, although 7 years ago i could at least take a walk in the cold without my body going completley numb and my bone’s snapping all over my body. the DEVIL run’s the H.S.E. , if anyone know’s of a doctor out there who has compassion & will help me get recognised as having a chronic disease so i can live the rest of my agonising day’s in at least a “little comfort & dignity” please do email me with good news. grahambolger@hotmail.com . God bless, because God is love and he is the only one who show’s it & mean’s it.

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    Mute graham bolger
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    Jan 15th 2015, 10:53 PM

    disgraceful what medical people are sayin on here, they dont HAVE A CLUE, what it’s like to be chronically ill. Ignorance at it’s most despicable.

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    Mute Michael Griffin
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    Jun 17th 2014, 10:42 PM

    I was tested for Lyme but it turned out to be quinolone toxicity. Be careful what ABs you use people…

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    Mute graham bolger
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    Jan 15th 2015, 10:59 PM

    Im dying a very painful death because of the similar medical ignorance on this page, making this woman out to be “WRONG” , M.s. mimics Lyme and Lyme mimics ” almost every disease there is” , thats why so many of us are being “blamed by un-educated ignorant doctor’s who “DO NOT KNOW MEDICINE” , medical recklessness at it’s most disgusting. Spoiled middle class “self indulgent heartless robots” .

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