LYME DISEASE

Hi All

I'm researching my oddest symptoms at the moment - sad, really, should get out more, I know!! And the strangest ones for now are an intermittent feeling as if my meninges are on fire, inability to sleep for long on my right side due to head pain, inability to sleep flat due to pain at back of head, and inability to sleep comfortably on left side due to increasing pain in left ribcage and under left ribs.

I reported the strange rib pain to whichever medics I was seeing 12 months ago, but no-one came up with any suggestions apart from costo-chondritis, but we were discussing holidays yesterday with friends and I remembered being bitten on the front of my ankle by something in a leafy glad in Poland in 2006 (thank you, dated photos from the camera!) and the bite hung around for months afterwards before it totally healed, and it was in 2009 that I was sent to a neurologist because I had started transposing the letters in words ("slepe" for "sleep" or even "sleeep", as noted in another post recently) - not just typo's, but when writing.

Well, I was standing in the post office yesterday and my eye caught a leaflet on Lyme Disease. I was waiting for a parcel to be found for me so had time to idly wonder what a leaflet on Lyme disease was doing in the local parcels office. I concluded that the connection was something to do with all our posties wearing short trousers these days and possibly wading through the grass of the Suffolk countryside to deliver some people's post. So maybe there's a high incidence of Lyme disease locally.   

When I read the leaflet I was astounded at the correlation of my weirdest symptoms with those of Lyme disease! And a forum I found on line noted the really uncomfortable ribcage pain as a major symptom!

Does anyone else have experience of or more information about Lyme Disease? I'd be really pleased to hear from anyone who has.

Love Tigerlily xx

Our long-haired dog often picks-up ticks when running in the fields near us and we (actually, Nelly) are very careful when removing and terminating them.

Inland dinghy sailors should also be aware of Lyme disease, as there is a risk of catching it through cuts in skin.

NHS Info on Lyme Disease

Lyme Disease Action

There is possibly a link between lyme disease and auto immune problems particularly thyroid. I don't think any studies have proved it but there are a lot of people who have tested positive.

Nelly

That's really interesting, Nelly and Edwin - thanks for your thoughts and I'll check out the LDA website.
Tigerlily xx

Hi Tigerlily, Would def say stick to obviously scientific sites for Lyme some of the sites I've seen are pretty scary wackadoo-run ones. From memory LDA one is v good.

Thanks, Johnny - I appreciate your warning!!

Tigerlily.

Hi Tigerlily
I don't get the rib pain but the headaches I'm having and have had a few times in the past are the same as you are describing, so could it be lymes disease, I've been bitten numerous times, our garden opens out on to fields with long grass and I've had bites that take ages to heal, or could it be PTH related or could mine be due to getting stressed out, I don't know. Good luck with your appt with Miles Levy I'm sure he will rule that out and get a decision PTH at last.
Love Amanda xxxx

Hi Amanda
What a coincidence with the headaches. Do you have any cranial nerve problems like facial tics, twitching eyelashes, trigeminal neuralgia, general facial neuralgia, tempro-mandibular joint problems? My jaw seems to move of its own accord sometimes when speaking or chewing and I bite the inside of my mouth. Also I have the one drooping eyelid and generally hooded eyes. And terrible face ache now with all the bottom jaw teeth aching at once!

As I see it at the moment (which is not too clearly!) the above problems could be due to a pituitary adenoma reducing the space in the optic chiasm through which most of the cranial nerves run, so putting pressure on them and thus affecting the organs they affect in turn. So I'm hoping Dr Levy will be able to rule that out/in, as the case may be.

The headache symptoms we share could either be due to such an adenoma, or to Lyme disease, the two seemingly sharing similar symptoms, but then so do a lot of other things as well. It's a complicated process to rule it out apparently and the treatment is large doses of antibiotics. Not something we want to have. But we also live at the side of a wooded bank and we photographed 2 muntjac deer there only the other day.

May I ask which hospital you are being seen at, Amanda? And is it you who has to have the ferritin top-ups? I ask because I came across low thyroid function connected with low ferritin recently. Are you being treated for low thyroid as well?

The book I found the reference in, but can't find just now, is Stop The Thyroid Madness by Janie A Bowthorpe (available from The Book Depository, post-free) and I think there is a website of the same name. I got a lot of useful info from both the book and the site when I was first looking at being hypothyroid.

An interesting point from the book is that there is something called Reverse T3 (connected with not being able to convert T4 to T3 adequately) and when I mentioned this at the Addenbrookes Thyroid Clinic the doctor looked at me in amazement and claimed not to know anything about it. I find that rather strange. Edwin and Nelly might be able to add something here.

Anyway, I hope you're not having the headache at the moment, Amanda, and that you've been able to relax a bit in some sunshine this weekend.

Love from Tigerlily xx

T3 and conversion to T3 is a mystery to most docs (and, sadly, some endos), so it's hardly surprising that reverse gets a blank response.

Cheers, Admin - couldn't believe they'd never heard of it, though.

Are you both OK at the moment? I do hope so.

Love Tigerlily xx

Hi Tigerlily
I don't have any of the other problems you mentioned except I do get jaw ache a lot, I put this down to grinding my teeth sometimes at night when stressed, well that's what GP has told me !!!!
My Endo is at Watford I wouldn't reccomend it !
Yes I do have ferritin infusions every 6-8 months because I can't store iron and can't take oral iron. Haemo dept have never found reason for this. 
Thyroid FT4 only showed up low once out of 3 tests and Endo has said all other tests since TSH T3 and T4 gave all been ok, I'm being copied in with the results when they eventually do letter to GP !!! So I'll have a good look at them then.
I haven't had muntjac deer in the garden but a very fat badger was sitting on the patio a while ago Tazz the Cat wasn't amused.
I have been in the garden doing a little bit but the neck ache and headache are still there, easing off a bit though.
I hope you get to enjoy some sun, you are such a strong person dealing with all of that and still having a sense of humour.
Good luck with M Levy let's get you sorted and back to health, God knows you deserve it.
Love Amanda xxxx

Hi Tigerlily,
I was tested for Lyme back in 07 but my result was negative.  I have never knowingly been bitten by a tick but they were prevalent when we lived abroad in the 80's.  The first time I saw one was on dh's leg, no-one seemed that concerned then.  We then lived in Belgium and awareness in the noughties was much higher.  I used to have to remove them from the cats.  We are rural now back in UK but I have never seen any around here.  I know it can cause some horrible symptoms but many are common to other illnesses so it is hard to diagnose and the test is not always accurate.
Sue

Hi Amanda - nice to hear from you - glad you've had some sun in the garden this weekend, makes a whole lot of difference, doesn't it? Well, for a moment or so!

Oops, have just read that the neck ache ties in with the headache for pituitary disorders. I should have my results back on Tues/Wed so will share them on the forum in case anyone else (you?) might be interested in them.

Watford can't actually be far from Leicester, can it? Just a thought, but if you don't get any further with your endo then maybe Dr Miles Levy could step in for you, too, with a post-op diagnosis. He was able to diagnose Jasmine's recurrent HPT, wasn't he?  Or are you already poised to see Fausto Palazzo as soon as you have some decent endo input?

I'm champing at the bit here now (god, I'm not only 'on' the horse, I am the bloomin' thing!) trying to rule out a pituitary problem and Lyme disease, because the only thing left if they do get ruled is pHPT (until someone tells me otherwise).

So enjoy the rest of the weekend, Amanda, and we'll "chat" again next week.

Love from Tigerlily xx

Hi Sue
Yes, the crossover of symptoms in all these diseases is very strong, isn't it? We had dogs in a former life before I became a cat lady, and we used to remove ticks from them quite often from walking in the bracken on country paths in Wales.
I have read recently that the test is not always conclusive, but that if you are producing antibodies to the little Burgdorfia blighters (and others, as I understand it - OMG!) it can be a good indicator.

Hope you're having a sunny weekend, too - Love from Tigerlily xx

Just to add - my earlier reference to dinghy sailors is because Lyme disease can be caught in lakes, reservoirs and streams, as well as long grass. In water, it is the urine of infected rats that carries it - hence then need to be careful with cuts in the skin.

Edwin

Bless you, Edwin - luckily I'm not a stream-wader, but other forum members might be, and that could be an interesting bit of the puzzle for someone.

have a good holiday weekend, Tigerlily xx

Tigerliy
Watford hospital isn't too far for me to get to but with the service I've got from them I'm sure if I had to I'd get to Leicester.
However when I spoke to the Registrar Endo she did say she was drafting a letter ready to go direct to Hamersmith when I've had the 2nd 24 hr urine done and checked for FHH. I did take this slightly with a pinch of salt because of her past performances but there is a glimmer of hope if I can get this confirmation from Endo that they think I do have persistant parathyroid disease.
I will get there in the end how ever long it takes.  
Amanda xxxx

Oh, that's great, Amanda. I remember now that you're going to see Dr Faustus as soon as you get your endo stuff sorted. That's great, no need to go via Leicester, hopefully!

I think your rant at the reg probably did the trick, so it's all working towards a trip to Hammersmith for you now.

If I ever get diagnosed with pHPT or pituitary problems, I will also ask to be referred there on the NHS. It might take time to be seen but at least I'll know what I'm facing. And with Jasmine and you having gone ahead of me, we'll all be able to compare notes, get sorted, and enjoy the rest of our lives.

Yes, you will get there, I'm sure.

Love Tigerlily xx

PS Just noticed that the amount of hair on my previously quite furry forearms has reduced dramatically - another low pituitary symptom, apparently.

I can't really add to any of the conversation regarding different doctors and locations there in the UK, but I did want to say that I've been hearing a LOT about Lyme disease lately. A couple of people actually mentioned to me that maybe I should get checked out for this because of my lingering symptoms. Hmmm......

I've also wondered about a pituitary problem. I will be discussing this with my PA at my appointment on Thursday.

Audrey

Good luck with your appointment this week, Audrey.

I'm looking at pituitary disease and Lyme at the moment - really to rule them out of the picture, but they seem to be ruling themselves in!

Lingering joint and neuro issues are a symptom of chronic Lyme disease. I was bitten in 2006 and may have had it since then! The main symptoms I've had recently that seem to fit are the rib-cage pain which is specifically listed for Lyme, jaw pain, and an isolated 3rd nerve palsy that causes double vision (but is corrected by glasses). I have other cranial nerve issues like TMJ, trigeminal neuralgia, and various facial tics and twitches - a bit like yourself.

Having said all this, my latest calcium is 2.45 (9. with a PTH of 12.7 (120), so pHPT is still in the picture! But I go to see Jasmine's Dr Miles Levy on 22 May, so hope he will be able to make some sense of all of this.

Keep us updated, Audrey - Love from Tigerlily xx

Good luck Audrey and also Tigerlily for 24 th.
Amanda xxxx

Hello Tigerlily
I had Lyme disease testing at Breakspear Hospital in Hemel Hempstead.
http://www.breakspearmedical.com/files/lyme-disease.html
This is a private clinic so it can be expensive. However they offer more kinds of testing than your GP will do. My GP only tested for antibodies which in Lyme are not often present after you have had Lyme for a while, even though you still have active disease. I had a positive lymphocyte transformation test and was treated for Lyme. My GP didn't agree that I had Lyme so I also had to pay for the treatment but I do believe I've had Lyme. I've had a few tick bites in my life we get ticks in our garden and we used to camp up the west coast of Scotland. I think I remember when I probably got infected. I felt like I had flu for about 6 months and I developed a very sore elbow joint. My GP told me I was not ill enough to have Lyme but a Lyme specialist told me recently you don't have to be ill to have Lyme. Although my last test was normal I do wonder if I have on-going affects from the infection which I think I had for many years.
maggie2

Hi Maggie
That is so useful - thank you very much for posting this. I did think the GP blood test would only be an antibody test, but I suppose it's a start. I did read on the web that you need to see a disease specialist if it looks as though you might have it.
These GP's know a lot about what we don't have, don't they? We can't have pHPT because we don't have high calcium etc etc.
I do hope you don't have too many lingering after-effects, Maggie, as the crossover between them and other afflictions can be quite marked, as I think you said.
Thanks again for the info - all noted - and I'll have a look at their website in case I end up needing to see them.
Tigerlilly xx