Just thought I would update some news as some of you have asked why I had not posted as often lately. Rest assured I am still writing plenty! This is my perspective as a doctor and a patient of the failing medical profession's attitude towards the unknown. The last paragraphs sum it all.
It all started after a visit to a farm in late December 2007, beginning of summer in New Zealand. I was bitten by a tick and not noticed it at first. Within a few days I started with a few random symptoms which I won't go into too much detail just now. I thought I was very unlucky, succumbing to a few ailments at the same time. I carried on working but felt very tired.
One day my left axillary lymph nodes became very enlarged and painful and that was when I noticed the remainders of an engorged tick...I was horrified as you can imagine. It was a friday evening, too late to go to my health center and I did not want to burden the guys after hours. So I self prescribed penicillin. The symptoms worsened as I experienced the Herxheimer's reaction ( healing crisis ) which happens in Lyme disease. I was certain then the tick was a carrier of Borrelia burgdefori, responsible for the disease.
I saw a GP the following monday who prescribed me Augmentin for one week, given my fever and symptoms, but failed to realize the urgency of early adequate treatment in Lyme Disease, despite all good intentions.
After I voiced my concerns, a colleague mentioned the name of a Microbiologist Specialist with an interest in Infectious Diseases, who kindly saw me in short notice. Unfortunately after the consultation he did not think it was a tick. Even though I saw it with my own eyes and asked a friend to confirm it and then removed it with tweezers. I was told to take painkillers and that I was probably suffering from a viral infection. Oh yes, the old virus excuse...The term some of my colleagues use when they don't know what is going on...
You can imagine my frustration. I was finding it very difficult to walk and had a lot of bone pain and numbness and at times a very high fever. Lyme disease or not, as a doctor I knew something was wrong. Still I wanted to make the most of my New Zealand experience so I carried on working to afford my caravan holiday in the end. I carried on with antibiotics for three weeks.
I actually began to feel better soon after and went on to have the holiday of a lifetime! I loved my " Jucy " caravan and saw much of the beautiful South Island as portrayed in the photos I have posted on this site. I was able to do sea kayaking in the Abel Tasman, glance at the Glaciers and gently hike in the Southern Alps. It was an unforgettable experience, so much so I did not want to come back to the UK. I enjoyed the freedom of the road, the pleasurable scenery, the laid back attitude far from the " rat" race.
When I came back, I worked in Accident and Emergency for two months but slowly symptoms started to come back. I had vowed to find out the truth about what happened anyway, but now with the symptoms again it prompted me once again to ask for help. I quit my job and visited family for two weeks. I was referred to the Institute of Tropical Medicine and tests came back positive for Lyme Borreliosis.
Funnily enough a few days later I actually developed the Bull's eye rash, which when encountered is pathognomic of Lyme Disease... so much for irony.
I have been taking doxycycline since and I am seeing an infectious disease consultant tomorrow.
So why the long post? I wanted to make a point. Not necessarily about me specifically as I am only one of many who suffer from this silent plague. But the fact that I am a doctor, I was able to recognize and reach for early treatment as this often betters the chances of full recovery. I am thankful for that. However I feel very sorry for all those who were not so lucky. Those who faced the medical establishment illiteracy regarding Lyme Disease and could not ask for help. As doctors we fail to listen to the patient. And when we cannot explain the medical mystery we attempt to give it some sort of name, some sort of virus perhaps. And failing that we accuse the patient of fabrication of symptoms, of somatomization, in summary "all in their head". As a doctor I will confess I did not know much about Lyme, only enough to think of it as a differential diagnosis. But I also like to think that when I am faced with something I don't know much about, I ask for help. A second opinion, a referral; I acknowledge my own limitations in the interest of best patient care. But so many doctors don't...
So to all you lymies out there I wish you the best of luck. Talk to your doctor and if he/she does not listen despite all good intentions ask another and another...
31 comments:
Sounds like you've been through hell - but good to hear that you are still alive and ok! You're experiences with the health service are frightening - msotly because most people would not think to argue with their doctor or push for a second opnion. The culture in this country (in most in fact) deifies the doctor's opnion as absolute. Couple that with most people's eagerness to belief a "it's just a virus" diagnosis" and you have a recipe for disaster.
I don't know anything about Lyme disease - I assume the medication you are now on will cure it completely?
Poor you - not such a great home coming! Hope you are well on the road to recovery and I look forward to reading some more of your poetry soon. Take care.
Hi Janette, just a fellow Lymie (since 2004) here waving back at you:-) My partner has it too (since 2001) but we only found out about Lyme last year and so have many years of non (or wrong) treatment to undo.
We are actually educating our GP about it but he still seems very bewildered.
Hope you're feeling (relatively) well.
Hi It was nice to read your blog of your experience but it seems you are still rather at the beginning of your journey with Lyme. The NHS believes that long term antibiotics are not necessary and also that if you haven't got positive blood tests you can't have Lyme.
I hope in your research you found ILADS guidelines or Burrascano's report and are treating accordingly. I doubt yourvisit to specialist ID consultant will follow this if he does please let us know because so far no one on NHS seems to follow ILADS guidelines unless directed by LLMD. I found mine through www.lymediseaseaction.org.uk and I'm sure they would appreciate any support you can give them. Why not go to conference in July. Good Luck at beating your Lyme.
Glad to read that you r back in full flow. Actually i have never heard about Lyme's disease or knew what a tick was. may be I dont think we have ticks in india. How dangerous can Lyme disease be?
HI Steve, thank you for your kind words and the concern. Thankfully I am feeling better after this last course of antibiotics, fingers crossed x
HI jan!
Great to hear from you, thanks for stopping by. It seems a lot of GPs, myself included need to learn a lot about Lyme.
I hope you and your husband have made improvements and feel much better. I can't believe you have had to put up with it for all those years...actually I can believe, sadly.
I hope your GP is more open to IALDS guidelines as most don't seem to. Did you manage to carry on working? The one consoling thing is that your partner just knows exactly how you feel...As you well know appearances deceive!.
All the best
janete :)
Hello j!
Thank you for your very informative comment. I do believe I am the beginning of the journey. I am just hoping that the initial antibiotics I took may have been of help. Obviously it was demoralizing to get the symptoms once again.
I did see the ID specialist who suggested it may have been Lyme or something else. He has done a second round of blood tests to confirm it. I had a positive Western Blot done, wants to check there is no cross reactivity.
He actually did listen to me and was very pleasant on one hand. On the other hand, he told me that since I felt much better within days of taking the Doxycycline (100mg twice a day) for three weeks I should not need them anymore. He believes that even if it were Lyme I am cured.
I really want to believe that, although after doing so much research about it, I am faced with the evidence of Chronic Lyme disease and Post Lyme syndrome and the countless stories of people's misadventures with it.
It does seem that the NHS thought is that three weeks of doxy is enough to cure you. I had actually read up about the IALDS guidelines a couple of weeks ago, but I must confess I will have to re read it again....One of the symptoms was short term memory loss.
Your Lyme Literate doctor is he on the NHS or the private sector? I will have to check the website and the conference you have mentioned.
Thank you once again for dropping by and the moral support ! I appreciate it.
janete
Hi Sandy
Thanks for stopping by. I would recommend the following video if you want to find out about Lyme, there also plenty of educational websites with a lot of information about it. But sometimes a video says a lot!
http://www.youtube.com/watch?v=ZGQINypsf7g
( may have to copy and paste )
Kind regards
janete
wow you sure suffered.
Hi Janette
I guessed what response you would get from NHS ID consultant. HPA say IDSA is authoritive. IDSA have agreed to review there guidelines following legal action that Att Gen of Conneticut was taking against some of members responsible for writing guidelines.
There have been Parliamentary Questions asked about testing for UK. Discussions between LDA and MP's all this and plenty of research articles thro website I mentioned.
I have been ill 5 years but particularly poorly last 3 and haven't worked since September although I am 75% recovered so hopeing to return soon. I was luck in that I had arthritic symptoms so GP suspected Lyme when I had favourable reaction to antibiotics and other cases had been confirmed in the practice. It's been a long struggle and I've been on antibiotics 200mg Doxy twice a day and amoxy first and then again now after doxy so total 17 months but complicated because I was on steroids 20 months GP thought it was poly myalgia rheumatica.
This is not such a simple disease as you are led to believe at med school. Take care and do have a good look at LDA website.
Joanne
Hi Janete, thanks for responding, you may have realised by now that a link to your blog was put up somewhere (yahoo group Eurolyme)!
In answer to your question - yes I have carried on working. In fact I was at a manageable level healthwise - until I started the treatment! Now I feel awful, but I'm hoping it's all worth it. If left untreated I would probably have paid more severly later on. My partner, on the other hand, was diagnosed with Chronic Fatigue in 2001 and hasn't been able to work since, unfortunately. Since starting treatment he has improved to the point he is able to enjoy his hobbies (canoeing/kayaking/ sailing), but unfortunately he's still not at a level that he can maintain constantly. However, the good days do seem to outnumber the bad days - at last!
Both of us got Lyme from the UK and it's criminal that the NHS still think it's rare in this country:-( I do my bit, every time I see a comment from someone diagnosed with ME/CFS or Fibromyalgia, I point them in the right direction. We must get rid of these 'dustbin' diagnoses, they're meaningless and people are left thinking there is no hope of recovery.
I could go on, I frequently do, I've become very boring about it all:-)
Take care
Hi Janete,
So sorry to hear you've been suffering with this awful disease. I have had Lyme disease for many years but have only been diagnosed 2 months ago. I didn't even know about Lyme disease when I first got ill after being bitten by a tick on holiday in Sweden - who would have thought such a small insect could do so much damage.By the time I suspected that was my problem the NHS tests came back negative so the doctors said it couldn't be that. Was diagnosed with many other things while my symptoms got worse. Recently found a specialist who understands the disease and I hope my health will start improving now I am on treatment although I know it's not going to happen quickly.
I know there are many other people in a similar or worse situation that me.
Your advice not to give up and to keep asking doctor after doctor is very good advice until you find one to listen. It can be hard to do this when you are feeling so ill but sometimes it's the only way.
Good luck with your recovery. And its good to be reminded there are open minded doctors out there!
Best Wishes, Carrie
Hi Billy!
Thanks for stopping by! Believe I am one of the lucky few and have not suffered like many others. I reached for early treatment so the outlook is very good. I just thought sharing my story would help raise awareness and highlight the needs of so many others out there with no voice.
Good to meet a fellow poet :)
janete
Hi Joanne!
I will go through the website in much more depth these coming days. Particularly as I home at the moment.
I know it is not the first time that money and politics have interfered with best patient care but it is still disgusting. Hopefully this new review will be of help and offer some hope.
I am thinking of going to the conference to lend them support and help raise awareness.
As I have said before I was one of the lucky few to reach for early treatment. I had done special study modules in Infectious Diseases during my training (which were optional by the way) to have some degree of awareness. The problem I encountered actually was trying to find guidelines to treat it accordingly. I was lost amidst so much conflicting information...
As I was bitten in New Zealand, I was told by two different colleagues ( one of them a microbiologist/ID consultant ) that there was no Lyme in New Zealand. I was actually prescribed Augmentin for one week by a GP given my symptoms and signs as having some sort of auto immune reaction... I was not able to walk, had a high fever, swollen nodes, tick bite, severe bone pain, tingling, dizziness, fatigue, etc...
I have read this reply in many people's story..."Sorry, we don't have Lyme here and therefore you cannot have it"... Famous last words, particularly in this new era of traveling and communication.
Poor you, having been treated with steroids for so long...nevermind the long term side effects as you are well aware but the fact that it must have aggravated your Lyme symptoms manyfold. Did you have a raised ESR? Glad to hear that you are doing better and almost back to normal self!
Best wishes
janete
Hi Jan!
I have joined the Eurolyme group and just waiting approval,thank you for the link. It has been great to share so many stories and words of support.
I know what you mean about doctors attitude towards the prevalence and incidence of Lyme in the UK.
When I first got back to the UK and went to see my GP in search of answers as some of my symptoms came back this is what he had to say:
After my detailed history of being in New Zealand and being bitten by a tick and possibility of Lyme disease...he says ;
" Oh but it is probably a virus, you know...Vestibular neuronitis ( middle ear infection )
is far more likely here...we don't have a lot of Lyme in the UK"
Well despite the fact that the bite occurred in New Zealand ( he obviously was not listening ), the UK has far more acknowledged cases than many countries...particularly as none are supposedly reported in New Zealand....
Then came the physical examination:
me : "my left leg, actually the medial shaft of tibia is very painful. At times it feels like someone got a hammer out and keeps hitting it.I am having trouble walking"
reply: GP says nothing and starts feeling my peripheral pulses ....
me thinking...hmmm I don't have a vascular problem...What are you doing ? What about eliciting tenderness ?? ( I didn't say these thoughts out loud ) I guess I knew I was going nowhere.
I then asked him to refer to Liverpool or North Manchester for testing which he agreed. A week later the surgery rings me to let me know that the test will be carried out in the small district general hospital instead, with little or no experience in Lyme....I simply gave up then. I knew how inaccurate some labs are and how important it was to find a decent center.
As I was due to fly out to Lisbon, my parents managed to book me an appointment there at the Institute of Tropical Medicine. The NHS is far from perfect there but at least you can choose who you want to see and self refer.
Thankfully the consultant agreed to do the Western BLOT which later came back positive and suggestive of Lyme Borreliosis as per lab findings....IGENEX kit used I believe.
I took the letter with the results to a different GP when I came back and requested referral for follow up here, as I live and work in the UK and have done so for many years. This time he was very helpful and three weeks later I was offered an appointment.
But this just illustrates the lack of education which is sometimes frightening. As a doctor I have an advantage to push things forward but so many others don't...
There is a lot as doctors we do not know and seem to be comfortable with the diagnosis of Chronic Fatigue Syndrome. Lyme or not, this deems further research, money and good will and less politics and complacency. I still believe in FIRST DO NO HARM. And ignorance is a dangerous thing. It takes time and education but also political intervention and guideline implementation. I don't think N.I.C.E have formulated one or challenged the current one in place.
Good for you for pointing people in the right direction! I hope you have started to feel better despite antibiotic side effects. I believe it will be worth it !
Best wishes
janete
Hi Carrie!
Thank you for stopping by and sharing your story! It does seem like many have been misdiagnosed or untreated for many years. I sincerely hope this treatment does help you in many ways. Particularly after years of not having answers and struggling.
I am hopeful that with time and education many doctors will be more knowledgable and open minded and start challenging current practice.
Thank you I appreciate your kind comment, it does mean a lot to me. I do try !
Best wishes
janete
janete,
que história triste!...
lamento e sinto muitÃssimo por voce.
estive aqui antes (venho quase todos os dias), mas sem tempo para deixar os meus comentários. li e fiquei chocado com a inépcia dos médicos que a atenderam. entendo que os sintomas possam tê-los confundido, porém, nada desculpa a ausência de uma solicitação de exames mais meticulosos, ao menos para eliminar as hipóteses erradas. inadmissÃvel!...
aguardo por notÃcias da sua melhora.
thanks for sharing. that was quite informative. but it has got so many symptoms. Thats why its hard to diagnose.
Hi Sandy
My point was that some doctors fail to recognize when the signs are all there...like tick bite, rash, fever...I had to treat myself initially because a GP did not agree with me, saying there was no Lyme disease in New Zealand. Well I have the symptoms and the blood test to prove it. What about the other who are not that fortunate?
Many doctors do not listen and are quick to blame other things. And those who do not know enough do not admit and fail to recognize their own limitation.
Also plenty of my colleagues fail to treat patients with Chronic Lyme patient because they state this simply does not exist....The parliament in the UK will hopefully change this as new evidence as come to life. Just recently the Connecticut Attorney General's Investigation revealed serious flaws in the Lyme Disease Guideline Process in which it lacked important procedural safeguards and blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel. This means that a lot of people suffered as a result...
I actually found this video which brought tears to my eyes thinking of all the unlucky ones.... www.underourskin.com ( trailer )
Thankfully there are good doctors out there. But sometimes you also need good people and those that listen.
Ola Gilrang
Obrigada pelas suas palavras, agradeco muito! Sinto me muito melhor depois do tratamento, tenho pena e de todos aqueles que nao tem acesso ou privilegios... Estou a pensar regressar ao trabalho assim que puder, procuro um emprego part time por enquanto. Assim tambem tenho tempo para a familia, a leitura e a escrita :)
Muitos beijinhos
Janete
Fortunately you were well aware of your risk. I recently read an article on how difficult it is to get diagnosed and treated for this disease due to lack of awareness.Hope you continue to feel better!
Yeah i completely agree with you. There are some docs that just wont listen. They just receive to a conclusion on their own
Thank you very much for the well wishes, Chey !
I appreciate it :)
janete
Hey! Glad you're back. This post is a great caution to all people, not just those with Lyme Disease. It would be too easy for us to discount what our bodies are telling us just because a doctor has a differing opinion. But I'm happy you listened to your body and are taking care of yourself.
get well soon!!!
Hi Nicole!
Absolutely ! Thank you for the well wishes, I will be posting shortly :)
kind regards
janete
thank you lx :)
Well this new lab has lost some of my blood samples. And they think one of the previous results may have been a false positive in view of fair amount of background staining. All this, despite symptoms and corroboratory history. I am feeling despondent at this point.
Hi Janete,
I am so sorry to hear that people with borreliosis in other parts of the world are suffering as we are in the US. Unfortunately, in countries like Canada, they take the lead from the US CDC. Not a bad bet in the past, but our system has been so corrupted, and that corruption is affecting medicine at every level over here. Michael Moore's movie SiCKO does a commendable job explaining what is going wrong.
Another movie I highly recommend is a recently released documentary called Under Our Skin, specifically about the Lyme epidemic in the US and how problems here affect that state of diagnosis and treatment. You can actually purchase a copy at www.underourskin.com
I had Lyme for 10 years before diagnosis. Going to doctor after doctor isn't enough, unfortunately. Before I was finally treated with heavy duty antibiotics, I was like someone with Alzheimers, only I was very young. When I think of what I and my family went through, all of which could have been prevented by a simple course of antibiotics when I first got sick (or when I reported the rash to the doctor)... What exactly do doctors gain by erring on the side of dealing with people the way I was dealt with, as if my life was worth nothing?
Superb blog post, I have book marked this internet site so ideally I’ll see much more on this subject in the foreseeable future!
Hi Janet!
I'm very sorry to hear about what you have been through, i really wish you the world of health.
I'm actually shocked to hear you picked that up here in NZ. I have been suffering from symptoms that either point to Lyme, Lymphoma or TB (the latter has been ruled out), i have fleetingly considered lyme disease as a cause, however unless i picked it up while in europe 8 years ago, i honestly did not think it was contractible in New Zealand!
Is this the reason your original GP dismissed it?
All the best:)
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