Lyme disease

Joined
Oct 8, 2011
Messages
39,552
I'm looking for some small indulgence here from the mod/admin team here. It is in the headlines right at a time that it has struck home here. My daughter is in a wheelchair as a result and it may take months to assess the long-term damage of a disease which can only be positively identified months after it has been contracted.

Does anyone here have experience of it whether directly or indirectly? Genuine callout to the crew.

ETA: Some links:

https://www.theguardian.com/commentisfree/2017/aug/22/lyme-disease-matt-dawson-diagnose-doctors

Matt Dawson: Lyme Disease was 'debilitating' - BBC News

https://en.wikipedia.org/wiki/Lyme_disease
 
Last edited:


GDPR

1
Joined
Jul 5, 2008
Messages
217,782
I'm looking for some small indulgence here from the mod/admin team here. It is in the headlines right at a time that it has struck home here. My daughter is in a wheelchair as a result and it may take months to assess the long-term damage of a disease which can only be positively identified months after it has been contracted.

Does anyone here have experience of it whether directly or indirectly? Genuine fallout to the crew.
I have never had this (DG) but I read the other day of a Brit footballer who had serious heart problems as a result, among other health issues. It is a terrible disease.

He has now recovered but it took a long, long time. So your daughter will have to wait. I hope her heart isn't affected by it.

If you cannot find it on the BBC website I'll find a link.
 

dizillusioned

Well-known member
Joined
Jan 19, 2011
Messages
14,527
Lots Des, my previous partner developed this while we were travelling. He developed Bells Palsy in Greece he was exhausted and competely debilated for 4 years, it ultimately lead to depression and his life.

where we lived at the time was full of ticks, it took ages to actually diagnose the condition, which i blame on the doctors of the time. Lymes is a hideous disease, most people cannot see the effects, it last for years in many cases.

I have friends who have also had it and only years later are they feeling almost normal.

Always, going into the country side, use an insecticide. If a ring develops around a bite IMMEDIATELY seek medical advice.
 
Joined
Oct 8, 2011
Messages
39,552
Lots Des, my previous partner developed this while we were travelling. He developed Bells Palsy in Greece he was exhausted and competely debilated for 4 years, it ultimately lead to depression and his life.

where we lived at the time was full of ticks, it took ages to actually diagnose the condition, which i blame on the doctors of the time. Lymes is a hideous disease, most people cannot see the effects, it last for years in many cases.

I have friends who have also had it and only years later are they feeling almost normal.

Always, going into the country side, use an insecticide. If a ring develops around a bite IMMEDIATELY seek medical advice.
Jeez, that's rough stuff to have gone through.

One of the issues seems to be that there is something like a 50% rate of false negatives on tests in the first few months.
 

Gin Soaked

Well-known member
Joined
Apr 25, 2016
Messages
4,100
Jeez, that's rough stuff to have gone through.

One of the issues seems to be that there is something like a 50% rate of false negatives on tests in the first few months.
Hope your daughter recovers soon and can put behind her. Terrible and so easy to contract.
 

Gin Soaked

Well-known member
Joined
Apr 25, 2016
Messages
4,100
With respect to "mid indulgence, the lived experience of posters with our public health policy and emerging health issues ARE appropriate for the site.

Policy versus reality and all that.
 

dizillusioned

Well-known member
Joined
Jan 19, 2011
Messages
14,527
Jeez, that's rough stuff to have gone through.

One of the issues seems to be that there is something like a 50% rate of false negatives on tests in the first few months.
For at least 6 months before the diagnosis, he was exhausted sweaty feeling out of sorts. Every week or two he was going to his doctor complaining. His doctor gave no indication of Lymes.

He was completely exhausted so I decided he needed rest sun and relaxation and time away from his business. I booked a small house in Italy for two weeks, the first night we arrived he was sweating profusely, completely exhausted and almost going in and out of consciousness. Local hospital was called and we ended up in Emergency for three days. He perked up. We spent the rest of the time with him sleeping, me worried sh1tless and trying to get transfers to Greece.

Once in Greece I went to a consultant with him, he immediately diagnosed Lymes. That summer was spent sleeping and trying to run my business, his business and a constant round of carers, consultant visits and medication. Eventually he felt more human.

Over the next few years, exhaustion was a constant. He couldn't run his business, I had to stand in, Diz Jnr was fantastic with him and took my role of making sure he was clean tidy and constantly fed. We tried everything to make him feel more human, eventually from a very active sports loving individual he became more or less tied to the bed for sleep. He developed depression and ultimately couldn't take it anymore.

When he was awake no one could tell anything was wrong. We couldn't do anything as he would tire easily. He looked normal, but i could tell when the tiredness was kicking in. Friends simply couldn't understand. I am sure many questioned his "illness" but the hardcore of people understood completely.

Lymes is not terminal, but Jesus it is an awful damned illness to carry. People just do NOT understand how debilitating it can be.
 
Joined
Oct 8, 2011
Messages
39,552
For at least 6 months before the diagnosis, he was exhausted sweaty feeling out of sorts. Every week or two he was going to his doctor complaining. His doctor gave no indication of Lymes.

He was completely exhausted so I decided he needed rest sun and relaxation and time away from his business. I booked a small house in Italy for two weeks, the first night we arrived he was sweating profusely, completely exhausted and almost going in and out of consciousness. Local hospital was called and we ended up in Emergency for three days. He perked up. We spent the rest of the time with him sleeping, me worried sh1tless and trying to get transfers to Greece.

Once in Greece I went to a consultant with him, he immediately diagnosed Lymes. That summer was spent sleeping and trying to run my business, his business and a constant round of carers, consultant visits and medication. Eventually he felt more human.

Over the next few years, exhaustion was a constant. He couldn't run his business, I had to stand in, Diz Jnr was fantastic with him and took my role of making sure he was clean tidy and constantly fed. We tried everything to make him feel more human, eventually from a very active sports loving individual he became more or less tied to the bed for sleep. He developed depression and ultimately couldn't take it anymore.

When he was awake no one could tell anything was wrong. We couldn't do anything as he would tire easily. He looked normal, but i could tell when the tiredness was kicking in. Friends simply couldn't understand. I am sure many questioned his "illness" but the hardcore of people understood completely.

Lymes is not terminal, but Jesus it is an awful damned illness to carry. People just do NOT understand how debilitating it can be.
Thank you so much for this. We'll be monitoring her very closely indeed. I'm also so so sorry for your loss.
 

Catalpast

Well-known member
Joined
Nov 17, 2012
Messages
25,560
Sorry for your troubles Des - don't know anyone who has it myself

- hopefully your daughter will work her way out of it given time
 
Joined
Oct 8, 2011
Messages
39,552
Sorry for your troubles Des - don't know anyone who has it myself

- hopefully your daughter will work her way out of it given time
Thank you for your wishes. LD seems to be relatively rare but becoming more prevalent.
 

flavirostris

Well-known member
Joined
Dec 21, 2007
Messages
24,571
It's notorious for being hard to diagnose. People go to the doctor complaining of fatigue, being run down and so on and it often goes mis-diagnosed.

There's an episode of Curb Your Enthusiasm where Susie complains of sudden fatigue and headaches, nausea and Larry asks 'Have you been in long grass recently?'

She replies that she has and he suggests that it could be Lyme disease and it turns out to be the case.
 

dizillusioned

Well-known member
Joined
Jan 19, 2011
Messages
14,527
Thank you so much for this. We'll be monitoring her very closely indeed. I'm also so so sorry for your loss.
Please do Des, there are umpteen alternative routes to take. we did not find any solace in conventional medicine. WE found nothing that would alleviate the symptoms and make him feel "normal". I am sure something has progressed in the years since this happened.

Please monitor her and look after her. Rest is always needed. (As I am sure you already know).

Thanks for starting this Des. Ticks are sometimes just seen as insects, they are very very dangerous.

I know the dogs in the States have some type of Lymes vaccine, i am not sure if this is available for humans at this stage?
 

razorblade

Well-known member
Joined
Nov 30, 2016
Messages
8,090
I'm looking for some small indulgence here from the mod/admin team here. It is in the headlines right at a time that it has struck home here. My daughter is in a wheelchair as a result and it may take months to assess the long-term damage of a disease which can only be positively identified months after it has been contracted.

Does anyone here have experience of it whether directly or indirectly? Genuine callout to the crew.

ETA: Some links:

https://www.theguardian.com/commentisfree/2017/aug/22/lyme-disease-matt-dawson-diagnose-doctors

Matt Dawson: Lyme Disease was 'debilitating' - BBC News

https://en.wikipedia.org/wiki/Lyme_disease
Sorry for your troubles, i hope things work out well for your daughter, dont have much knowledge on this condition but it seems very unpleasant, i wish your daughter all the best and full recovery from her illness.
 

raetsel

Well-known member
Joined
Jun 5, 2017
Messages
9,117
Sorry to read this, Des. I first read a warning about this in a travel guide for the Czech Republic, about 12 years ago. Hadn't heard of it before even though it seems to occur in Ireland as well though isn't common. It is surprising though that many people have no idea that this exists and poses a serious threat to people's help and there aren't more warnings about it.
I hope your daughter makes a full recovery very soon.
 

users

Well-known member
Joined
Apr 3, 2017
Messages
1,072
Lymes disease has always been around as I understand it, it's just that it's only fairly recently been discovered.

In the United Kingdom, Lyme disease is known to be carried by the sheep tick, Ixodes ricinus, the hedgehog tick I hexagonus and the fox or English dog tick I canisuga. Ticks can also feed on deer, other small mammals such as mice and on birds. The sheep tick prefers to live in long grass, woods and moorland, although it does not occur exclusively in these habitats. The other two species of tick live mainly in the homes of their hosts (hedgehogs, foxes and badgers) but can be found wherever these animals travel. People who live or work in the parts of the country where the ticks are prevalent are likely to be at greater risk, as are those in urban areas with overgrown gardens or with extensive parks. However, cases of the disease are widespread and it is possible that the full picture of tick distribution is not yet fully understood. Anyone can get Lyme disease if a tick that is carrying the infection has bitten them.
http://www.lymediseaseaction.org.uk/about-lyme/faq/

Reading the above would make you fearful of stepping into the garden and yet before we heard of it most of us managed to avoid this disease down the years.
For me this is one of those diseases where disease prevention in population terms is worse than the disease itself. It will have mothers not letting children out the door in summer time unless covered head to toe and keep off the grass. Yet one more nail in the coffin of a normal childhood.
I am not saying this in any way to diminish the awful effects on those suffering severe effects from the disease, but it seems to be rare and not something most have to worry about.
 

flavirostris

Well-known member
Joined
Dec 21, 2007
Messages
24,571
It seems to be linked to deer populations. In the US, they are always warning people about Lyme disease in areas which have a high density of wild deer. Parts of Long Island and Upstate New York are Lyme disease hotspots.

Deer populations in Ireland have increased enormously, which must make the risk of Lyme disease greater.
 
Joined
Oct 8, 2011
Messages
39,552
Lymes disease has always been around as I understand it, it's just that it's only fairly recently been discovered.


Lyme Disease Action FAQ | Lyme Disease Action

Reading the above would make you fearful of stepping into the garden and yet before we heard of it most of us managed to avoid this disease down the years.
For me this is one of those diseases where disease prevention in population terms is worse than the disease itself. It will have mothers not letting children out the door in summer time unless covered head to toe and keep off the grass. Yet one more nail in the coffin of a normal childhood.
I am not saying this in any way to diminish the awful effects on those suffering severe effects from the disease, but it seems to be rare and not something most have to worry about.
Speaking to some of the experts on it, it appears that it is on the rise - and not purely on the basis that it is a relatvely recent discovery. Of course many other diseases may have been blamed for the symptoms demonstrated by a sufferer and in the past a suffer of Chronic Fatigue Syndrome may have been a victim of Lyme. Blood tests aren't perfect as the bacterium is somewhat deceptive and can cause symptoms of other common maladies.

It's on the rise at the moment - some say as a result of encroachment on wild habitats and the tick's migration to other mammals, which creates new vectors. It must always also be borne in mind that newly diagnosed conditions will always show an increase in diagnosis from the ultimate low baseline.

There is research into whether climate change may be a factor - but I don't want to get into that discussion.

It's all a mess. My daughter presented at hospital a year ago with precisely the same symptom she has now. Bloods didn't reveal anything until now.
 

Lara2

Well-known member
Joined
Nov 23, 2012
Messages
7,187
I'm looking for some small indulgence here from the mod/admin team here. It is in the headlines right at a time that it has struck home here. My daughter is in a wheelchair as a result and it may take months to assess the long-term damage of a disease which can only be positively identified months after it has been contracted.

Does anyone here have experience of it whether directly or indirectly? Genuine callout to the crew.

ETA: Some links:

https://www.theguardian.com/commentisfree/2017/aug/22/lyme-disease-matt-dawson-diagnose-doctors

Matt Dawson: Lyme Disease was 'debilitating' - BBC News

https://en.wikipedia.org/wiki/Lyme_disease
Hi Des, sorry to hear this, Lymes disease sounds fairly debilitating. I heard a bit of George Hook's High Noon today on Newstalk 106, not my usual fare but he had a very informative interview with a lady suffering from Lyme disease and the difficulties involved with it, particularly finding medical help for it in Ireland. I recommend listening to it.

See High Noon, 12.00-14.00, Part 1, about a third of the way into the show:

Listen back - 9 - 38432 - 22nd August 2017 - High Noon Part 1 |...
 


New Threads

Popular Threads

Most Replies

Top