Lyme disease? Interesting link.

[DeniseR]

I was trying to find out more about the excruciating facial pain I get when I do cardio, as well as thumping heart, nausea and dizziness. (This is now happening just when walking up hill too fast). I came across this, linking it to Lyme disease.

I am awaiting my endo's response as to why he has dismissed Lyme disease as a possible diagnosis, especially as I live in the countryside and regularly walk my dog through fields(which he didn't know, as he never asked).

It seems other people(with Lyme) are also experiencing this symptom, which is interesting to me as I've not been given any previous explanation for the facial pain before. Didn't know if anyone else thought they were alone on this?

medhelp.org/posts/Lyme-Dise...

[helvella]

I know at one point your B12 was quite low. Is it still low?

I had facial pain before diagnosis for hypo - and it seemed to resolve by simple B12 supplementation. Will never know for sure - but thought I'd ask.

Rod

[DeniseR in reply to helvella]

Hi Rod

I don't know what it is as I haven't been tested in ages. It was 300 and something previously and I'm due for more thyroid tests next week from the hospital and am going to ask my doc to have some of the other tests done that haven't been done in a while, so hopefully will find out.

I haven't started B12 supplements or anything due to the amount of 'messing around' with my meds but will once I've had my synacthen and blood tests I think. Then I'll see if it helps

Thanks, Denise

[amac]

Hi,

Have you been at risk from Lyme disease? The only way you could contract this is being bitten by an infected deer tick. Do you spend a lot of time outdoors, or working with deer, and have received regular tick bites?

[DeniseR in reply to amac]

Hi

I don't know if I've been at risk but I'm assuming I'm more likely to get it from the amount of time I spend outside. I live in the middle of a farm and regularly walk through fields and woods(where there are some deer). I also frequent a deer park that I walk around and regularly visit the new forest as my family lives there. I don't know if I've ever been bitten but I understand you could be bitten and not necessarily know. I get bitten by lots of things living where I do in the summer! lol

[amac in reply to DeniseR]

Hi Denise,

Normally ticks, and their nymphs, attached themselves for quite a while to feed on the host's blood. Nymphs are sometimes hard to spot, especially when on the "rear, lower" parts of the body. Nymphs, for some reason, are more likely to transmit the disease too. Unfortunately almost all doctors are ignorant of the fact that the patient won't have any symptoms and blood tests are unreliable (a common theme on this website!), so you're quite correct when you say one could be bitten and not know. If I was you, I'd check for the prevalence of the disease in the areas that you visit. In future, if you get a tick, remove it with the correct tool and keep it in the freezer, for future diagnosis, incase you become unwell.

I have friends in Russia and every time someone gets a tick, it is analysed without question. They have more problems (other tick-borne diseases) than us but it goes to show that, in this area, they are way ahead of us.

[DeniseR in reply to amac]

Thanks Amac

I've heard the blood tests can be unreliable but when the docs won't even consider it an option is ridiculous when it could mean the difference of actually finding out what's wrong or not. They just seem want to medicate the symptoms instead of finding the cause, as most of us know!

It's strange how different areas of the world have different ways of working, although I know they have varied issues, you'd think the docs would all just share their research and work together!

[carolr in reply to amac]

Armac, Deer Tick don't live in Europe or the UK.

There are 4 main of Tick across Europe.

Each animal has it own type. They each produce different symptoms. Deer carry sheep Tick.

Carol

[amac in reply to carolr]

Carol, Thanks. Just goes to prove that we learn something new every day. Alan.

[Moggie]

Hi Den,

Think I may have shared this with you before, and mentioned lyme disease due to you going abroad just before Christmas and then taking an absolute age to recover from it, but it is a blog from a lovely lady who used to use this site.

thyroiduk.healthunlocked.co...

Hope it helps

Moggie x

[DeniseR in reply to Moggie]

Hi Moggie

Thanks! You have mentioned it to me recently which is why it's still in the back of my mind, even though my endo registrar dismissed it. I was looking up what might cause possible facial pain on exercise and this was one of the first things that came up, which I thought was a bit of a coincidence.

I'll take a look at the blog now

Hope you're feeling a bit better Moggie!

D x x

[Angel_of_the_North]

Many years ago, when I worked for the County Council, we had outbreaks of Lyme disease - I had to send round the newsletter with the info. So you can get it in certain areas of the UK.

[DeniseR in reply to Angel_of_the_North]

Thanks Angel

It seems that some people think it is such an impossibility but I don't see the harm in trying to test for it, just in case.

[val29661]

Hi DeniseR, I agree it is worth getting blood tests done to check for Lyme disease, even if only to rule it out otherwise you will always be wondering, but another possibility coule be some sort of neuralgia, my Dad suffered for years and years with excruciating facial and head pains before finally being diagnosed with trigeminal neuralgia, it used to not only bring tears to his eyes but also to our eyes seeing him in so much pain

[DeniseR in reply to val29661]

Aaaw, your poor dad How did they treat it or was it just painkillers?

It's a bit of a strange thing I suppose, never really heard of it until I started getting it. It started when I first started to get really ill. I'd had a break from running and was trying to get back into it after a few months, at first I thought it was the cold weather and earache but then realised it was more than that.

I now know if I'm walking or exercising and my heart thumps harder and I get facial pain that I need to stop or slow down. If I continue I end up being really ill for anywhere from 2/3 ays to 2/3 weeks! I've also notice recently that with the facial pain comes the feeling I might throw up.

The docs haven't really taken much notice of this symptom but I haven't said anything about it getting worse yet.

Also, when it was first happening, all my lymph nodes were swollen and painful but the GP's just brushed it off as some unknown virus.

[carolr in reply to val29661]

Val29661, if only the test for Lyme were true.

There are over 300 types and 4 main ones across the UK and Europe. It depends on how fit the immune system is.

Michael J Fox caught Lyme then it turned to MS.

Prof Hawking might not have a genetic illness but his condition

started out as Lyme..

Carol

[val29661]

Yea he was fobbed off with a painkiller (can't remember what it was now but it was discontinued a few years ago), he kept going back to docs who just gave him more, this went on for years (and I don't just mean 2 or 3, it was several) he couldn't get any satisfaction, in the end he was convinced he had a brain tumour, he eventually got to see a new gp that had just joined the surgery, who told him straight away what it was and said "these tablets you are on won't do a thing for it" (which he obviously knew but couldn't get anything else from his doc), he was then given a tablet specifically for it, which helped ease the pain more or less straight away, unfortunately Dad died about 6 months later from heart disease, although it was totally unconnected, because of the useless gp dads last years were spent in pain when they could've been so much better, but we have all heard about useless doctors

[Piffy]

Hi, (possibly before you next see the doc) can I suggest you contact the charity bada-uk bada-uk.org Although there has been some improvement over the years, there is still a lot of misunderstanding of Lyme. It may be useful to request a set of 'guidelines' for your doc. I am suggesting this as I know some in the medical profession are still close-minded when it comes to Lyme.

bear in mind that a negative test does not actually rule out Lyme!

Take care

[DeniseR in reply to Piffy]

Thanks Piffy!

I'll take a look. It's always good to be informed before seeing the doc

[Piffy in reply to DeniseR]

No problem, be patient (no pun intended) if you don't get a response straightaway, it's staffed by volunteers all affected by Lyme in some way themselves. Because the whole Lyme thing can be quite difficult and confusing, some people drop the idea at the first 'no you haven't got Lyme' response from an uninformed doc. Some of them, unbelievably, still say there is no Lyme in this country, despite masses of work being done to raise their awareness.

There was a pretty good piece on Embarassing Bodies on 1st Apr, which featured the charity's founder, Wendy. (Probably available on catchup if you want to see it)

[Natalia]

Hello! I have Lyme disease and also Hashimoto's thyroiditis (it was my post that Moggie directed you from a while back!) Firstly, Lyme is all over this country and isn't confined to geographical regions, the testing here is notoriously unreliable and misses most cases and unfortunately there is no care on the NHS for chronic Lyme patients. We are all having to either consult private docs or go overseas. I personally have to be treated by an American doctor and many other patients are going to a private clinic in Germany. The UK Health Protection Agency unfortunately appears to follow very strict guidelines issued by the Infectious Disease Society of America who have been investigated for conflicts of interest as their guidelines have been found to be fundamentally biased and flawed. Until these guidelines change, we just won't get the help we need in this country. I focused on my thyroid issue for YEARS but it turned out just to be the tip of the iceberg. I have since discovered that a lot of Lyme patients have autoimmune thyroid problems and endocrine disruption. I have no recollection of a tick bite (the nymph ticks can be as small as a poppy seed), I had no classic bullseye rash and so the disease has now become so widespread in my body. I also have a host of nasty co-infections introduced by the tick. The tick doesn't have to be attached for a long time in order for you to get the disease. Please message me if you would like any more info/links to Lyme disease. If you aren't getting better please do consider this disease. It is a lot more common than you might think. This documentary is very enlightening...

youtube.com/watch?v=2JgR_Jf...(Not working as expected?)

[DeniseR in reply to Natalia]

Wow thanks Natalia. I'll watch this tomorrow when I have time, thank you. I don't remember seeing it before but then these days I'm lucky I remember my name lol

It's awful that they don't deal with this but then why am I surprised! x x

[Natalia]

No problem.. I also have a blog and help to run a Facebook support group where there is lots more info on Lyme (not sure if I am allowed to put links up here - sorry if I am not!)

lymehaven.blogspot.co.uk/

facebook.com/LymeDiseaseUK?...

Again, do PM me if you want any more info x