Lyme disease update

[greencloud]

It must be absorbed since it has a worming effect (still worth using a good wormer - advocate and milbromax both been good).

I read some horror stories about advantix after it was used on my mutt - as part of a 'puppy pack' with checks & his jabs - but he's always been fine with it. I take him out for a couple of hours and keep him away from furnitue for a day or so til its worked in as a precaution.

I guess its just one of those things that suits some but not others.

 

[Dave]

I use Effipro by Virbac which Ive been told kills ticks by my vet. But if Im in a canoe, the dog goes swimming a fair bit. My worming tablets are also Virbac.

 

[Herbalist1]

Goatboy and Dave - I certainly sympathise with you both. I've had CFS for well over 10 years now and went from a fairly fit guy spending a lot of time outdoors to a bit of a basket case. Was told early on that most people will make a full recovery, some a partial recovery, some will continue to deteriorate and some will stabilise at a certain level but not improve further - I seem to be in the final group. I have good days, bad days and really bad days. It's certainly left me unable to work - whose going to employ someone who can't guarentee to be at work the next day or even complete the current day! Fortunately I have a pension from my previous employer and the wife has a good job so we're luckier than many. I do know though how stressful it is to have to go for health assessments and how arbitrary the whole system can be depending who you see on the day!

 

[Macaroon]

Dave, you just need to stop the dog from what they call "Full immersion" for 24 hrs. after application, then it's fine.

 

[Dave]

Ah, ok, good to know thanks Mac.

 

[Dave]

Goatboy and Dave - I certainly sympathise with you both. I've had CFS for well over 10 years now and went from a fairly fit guy spending a lot of time outdoors to a bit of a basket case. Was told early on that most people will make a full recovery, some a partial recovery, some will continue to deteriorate and some will stabilise at a certain level but not improve further - I seem to be in the final group. I have good days, bad days and really bad days. It's certainly left me unable to work - whose going to employ someone who can't guarentee to be at work the next day or even complete the current day! Fortunately I have a pension from my previous employer and the wife has a good job so we're luckier than many. I do know though how stressful it is to have to go for health assessments and how arbitrary the whole system can be depending who you see on the day!

Terrible isnt it Herbalist?

They say a photo paints a thousand words.

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On the left, in the white plastic box is my monthly supply of drugs I have to take. Arrived yesterday. On repeat every month. Each one of those little white boxes has 28 pills in. 200 prednisolone tablets. Theres also some drugs not on there, methotrexate, already stored, hence all the folic acid.

On the other side, are some of the things used to combat the nasty side effects of the drugs Im on.

If you click on the photo, you can see the bigger photo, then press the plus sign.

Ive got more pills rattling around inside me than boots. Been on them differing doses for about 5 years now. I take a literal fistful of drugs a day.

And if you stop taking them, bang, youre sweating buckets, and then teeth chatteringly cold, can hardly move, ambulance into A&E, no good. A&E docs, bless em dont have a clue about the disease.

You cant work fully. Nighmare. You go home, push through it. Lots of horrendous side effects. Disgusting, you dont want to know. Much like severe Chronic Lymes I imagine.

I was a very fit youth, yorkshire martial arts champion, lancashire open champion, photos in paper big trophies etc, captain of football teams. Cross country runner, always finished in top three. Very driven.

I used to work in a very high pressure consulting role for multinationals. For 10-20 years. Now, Im a shadow of my former self. Some days ok, other days cant get out of bed. But I still push, because its always been in my nature. Ive always been very 'game'

Horrible thing, losing your health. Horrible Limbolike existence. Wouldnt wish it on anyone.

Why I keep missing meets.

[BTW I pay for all these and dont claim any benefits, not that thats a bad thing]

 

[Seabeggar]

As a medic who has read a lot of Lymes research, made a number of serological diagnoses & treated many folk after tick bites with antibiotics I agree this is a desperate situation.

My kids & I have had multiple tick bites so I have a very personal interest in trying to understand Lymes.

I regret to conclude from my reading that we are in the dark ages when it comes to this condition, not because most Drs don't care but because the research hasn't yet been done, our scientific understanding of this condition is so very limited.

Perhaps the sum of our scientific knowledge of Lymes amounts to 10% of what we need to know? The remaining 90% which will contain the clues to effective treatment, vaccine etc & will require many years of research. Unfortunately that research is expensive and slow. Drug companies have little interest in funding it and charities / Unis will focus on more common conditions like cancer and heart disease.

In the meantime many suffer debilitating symptoms & as the previous posts indicate even with a diagnosis of chronic Lymes the treatments on offer are often less than effective.

Do I seek treatment for my kids and myself with courses of antibiotics every time they get bitten ? No , if I did we would never be off them through the summer.

Do I take avoidance measures yes. Am I going to stop going into the woods / garden , no .

The absolute priority is a reliable safe vaccine.

 

[Robson Valley]

Seabeggar: what do you suppose it will take to make the research attractive? Attractive enough for legitimate funding at a level which ought to bring some positive result.
I can't imagine that the driving force (or money) will come from the existing pharmaceutical industry, content to sell buckets of pills.

 

[santaman2000]

......Perhaps the sum of our scientific knowledge of Lymes amounts to 10% of what we need to know? The remaining 90% which will contain the clues to effective treatment, vaccine etc & will require many years of research.

The absolute priority is a reliable safe vaccine.

Seabeggar: what do you suppose it will take to make the research attractive? Attractive enough for legitimate funding at a level which ought to bring some positive result.
I can't imagine that the driving force (or money) will come from the existing pharmaceutical industry, content to sell buckets of pills.

Smith Klein developed a vaccine about 17 years ago. I had it while it was still on the market. it was a three shot series:
-Begin = Shot 1
-One month from begin date = Shot2
-One year from begin date = Shot 3 (final)

It was pulled from the market for lawsuits and lack of sales.

 

[C_Claycomb]

I am astounded that we are still in the dark ages. I was bit by a tick behind the knee while living outside New York in about 1985. Fortunately, the action of my knee had killed the little blighter and 24 hours after picking it up it was still there in the centre of this nice red bull's eye rash Mum got it out and called the doctor. No lack of understanding in the medical profession there, they told mum to take me straight to the nearest pharmacy, they were faxing over the prescription for penicillin and for her to get the first dose into me at the pharmacy, not even to wait until we got home! Seem to have been okay since. Don't like ticks at all. I get through a fair bit of permethrin treatment for socks and trousers.

So, that was back 30 years ago and that area of NY state was nationally known as a hot spot for lyme. It was also home to some of the richest people in the US. Rhetorical question...what the heck has been happening since then?!?

 

[mrcharly]

Mostly what has been happening in the UK is that Lymes has spread.

It's really uncertain whether it hardly existed over here (30years ago) or whether it was under diagnosed. Really unclear. My step-daughter got it when she was 2 - probably tick brought in by the cats - fortunately her mum recognised the rash and insisted on the treatment protocol used in the USA.

 

[Seabeggar]

Various reasons the old vaccine was withdrawn including....

".....anti-Lyme vaccine groups were formed with the goal of ending the vaccine’s production. A class-action lawsuit was filed, asking SmithKline Beecham to update the vaccine’s label to include the possibility that it could cause arthritis.[ix] Other individual lawsuits claimed that the vaccine had caused arthritis and various other adverse effects.In 2002, in response to low vaccine uptake, public concern about adverse effects, and class action lawsuits, SmithKline Beecham withdrew the vaccine from the market despite the fact that both pre- and post-licensure safety data showed no difference in the incidence of chronic arthritis between those who received the vaccine and those who had not. Today there are no vaccines available to prevent Lyme disease, and it is unlikely that another will be developed and licensed in the near future – not because of a lack of interest or problems with development, but because of the precedent set by the first vaccine’s ultimate failure in the court of public opinion" History of vaccines website

However its not as hopeless as above there is current commercial biotech work going on in Europe on a new Lymes Vaccine.

With regard to more general research not sure how the funding can be improved, like many infectious diseases that blight developing countries very little interest from Western pharma in any infectious disease except perhaps HIV.

Perhaps if someone like Bill Gates gets infected more money would appear?

With regard to the Dark Age comment, perhaps enough the basic knowledge is there, but the more complex issues of management of chronic infection or even a reliable blood test seem far off ?

With regard funding further research

 

[Miyagi]

Goatboy, Dave and Herbalist1;

I went cold reading your posts.

I got Lymes about 5 years ago, went undiagnosed for months and it almost killed me.

I was superfit at the time, which may have helped as apart from stiffness/aches and pains from old injuries, I escaped the arthritic type after effect. It was destroying me bit by bit. Eyesight, kidneys, liver etc all took a kicking and I was unable to work. DWP treated me like a leper.

I've got my own daytime touristy takeaway now, and can work to my limitations but couldn't work for an employer after Lymes wreaked havoc with me. It has certainly prematurely aged me, I walk with a stick these days but know of folk crippled and wheelchair bound now.

It's taken me a long time to recover not just physically but mentally too. Knowing how fit and active I was compared to how I am now was hard to get used to. I too miss meets or am unable to even go for a bimble at times, but thankfully I'm still here. This is a good thing as the dog is rubbish at opening tins and stuff.

Bill Gates? Ouch Seabeggar, but true. Co-incidentally, I read an article recently that billionaire Phones4u founder John Caudwell and his family have all got Lymes.

We should arrange a Lymes group bushcraft meet up and go for a bimble. Group Motto; "Is it far from the car park?"


Liam

 

[Goatboy]

Liam,
Good post and I like the moto, though its sadly true.
The DWP were a true nightmare, apart from not wanting to be there they were the most unhelpfull bunch around. Giving me the runaround from site to site when I could hardly move and playing mental games like loosing paperwork repeatedly. Ended up with no money for over a year and still don't recieve enough to cover costs.
The NHS have been good bar one doctor though. Sounds like you've been through the ringer though. I knew you'd been ill but didn't know it had been so serious.
I wonder if we should have a wee thread somewhere so that folks suffering can post up problems and how they've dealt with them? Handy for folks needing to find insperation and help. Info is hard for folks and medical proffesionals alike to come by so may help. There's a fair bunch of folks with lymes and other medical problems on BCUK and some of the coping strategies that folks have come up with are brilliant, could also give mental help too as like you going from gnarly rugged outdoor mountain man to not being able to walk very far can hit hard in the noodle department, I found it that way anyway. Was lucky as my mate Belzeebob made sure that I could still get on the odd camping trip, he did a lot of work, putting my tent up and a lot of the camp admin as well as not making me feel bad about it. I owe him a lot, he's a top chap.
Glad you've gotten to a place where things are working for you and a meet up of all us sickies sounds good. Have to be somewhere quiet though as other campers may fear that they've walked into a zombie appocalypse with us all shuffling around.
Cheers for posting up about it,
Colin.
Sent via smoke-signal from a woodland in Scotland.

 

[santaman2000]

Various reasons the old vaccine was withdrawn including....

".....anti-Lyme vaccine groups were formed with the goal of ending the vaccine’s production. A class-action lawsuit was filed, asking SmithKline Beecham to update the vaccine’s label to include the possibility that it could cause arthritis.[ix] Other individual lawsuits claimed that the vaccine had caused arthritis and various other adverse effects.In 2002, in response to low vaccine uptake, public concern about adverse effects, and class action lawsuits, SmithKline Beecham withdrew the vaccine from the market despite the fact that both pre- and post-licensure safety data showed no difference in the incidence of chronic arthritis between those who received the vaccine and those who had not. Today there are no vaccines available to prevent Lyme disease, and it is unlikely that another will be developed and licensed in the near future – not because of a lack of interest or problems with development, but because of the precedent set by the first vaccine’s ultimate failure in the court of public opinion".....

That's the true shame; that public opinion (likely wrong) stopped production of what was apparently a safe and effective vaccine and has essentially scared others from further research.

 

[Miyagi]

Hahahahahaa Goatboy/Colin!!!

I now have a mental picture of a family's Sunday woodland stroll coming to a halt upon seeing what looks like the shuffling, hirpling, smoke wreathed cast of Britain's Hills Have Eyes.

That's a great idea for a group, the best therapy for when folk are down is talking to someone, especially fellow sufferers.

I can see the threads starting now;

Bushcrafting as a raspberry ripple.
All you needed to know about A frame and Zimmer frame shelters and more.
Diabetes Type2 - it's not all sweetness and lite.
Gluten Free Bannock - yes, it's as bland as it sounds (but so is nettle soup)
Forestry Commission complains - Are Lymers and old geezers a threat to the UK's Blackthorn?

I could go on lol

Liam

 

[Goatboy]

"Four steps to knackerdness"
"Camping with a care giver"
"Peched out in Plockton"

A mini-moot sounds good. Instead of the Naughty Corner like the big one we could have The Broken Corner.

I didn't like talking about it at first as I felt bad and not really worthy at first I also didn't want folk to think I was moaning. But I've come to learn that it does good to share, not just for me but it helps other too.
If we can ever get Comrie or where-ever sorted out we'll have to arrange something. There was kind of a mini meet for sickies at Wooplaw a couple of weeks back, quite a few folks coping with stuff got there, unfortunately I couldn't.
Thinking of names for a meet of broken folk meeting up a hill maybe we should shy away from names like Broken Back Mountain Meet.
Will have a word with Toddy, know she's been trying to peice a meet together in Scotland.

Sent via smoke-signal from a woodland in Scotland.

 

[Miyagi]

Aye, know what you mean.

Good idea, not seen Toddy in a good few years.

Meeting up a hill... better make it somewhere flat We have a wee wooded area under the Forth Road Bridge that the Ranger wants to see used more.

I missed the trip to Wooplaw as well. My neice lives down that way and bumped into a bloke doing woodsy stuff there. My uncle does that kind of thing she says. Who's your uncle he asks, I know your uncle. It was Stuart Fish she bumped into lol.

Liam

 

[Goatboy]

Ohh hang on, if a group of folk from an internet group meet up under a bridge does that make us trolls?

Does sound a good central meeting point though. Does it have facilities for some of the walking wounded who may need them?

Sent via smoke-signal from a woodland in Scotland.

 

[Miyagi]

Ohh hang on, if a group of folk from an internet group meet up under a bridge does that make us trolls?

Does sound a good central meeting point though. Does it have facilities for some of the walking wounded who may need them?

Sent via smoke-signal from a woodland in Scotland.

There's a tarmacadam'd pathway and a gravel path in to the area. Car parking would be in my street just next to it, in fact there's a choice of three streets next to it. I could get permission for overnight parking on the gravel access/delivery space at the entrance.

Facilities - plenty of bushes... or there are toilets including a disabled loo (RADAR key needed) at my takeaway on the bridge's south side - but that'd be 300 feet above us. Or there's my loo at home, they can use my key

Trolls lol, quite apt, seeing as how we've derailed the thread...


Liam