Lyme Disease

[penguinsandpanda]

Went to rainforest in August and bitten by an insect leaving a large 1 to 2 inch oval flat red rash. Around 3 weeks later become ill with extreme tiredness, dizziness, flu, muscle aches, bone aches, pins and needles etc. Still same after 6 months, rarely well enough to leave house, and just had 2 days of severe chest pains which ive had checked out at A and E. Do you think its worth testing for Lymes? Cancer tests are so far proving negative. Blood tests normal except anaemia and one issue on kidney test.

[Mrsknackered]

100% worth getting tested. It’s quite hard to test, but it can have some terrible complications.

It could also be a post viral thing? Sounds small, but they can be vile.

I hope you get better soon OP

[Mrsknackered]

Also, have they ruled out other tropical diseases? If not, ask for a referral to a doctor who specialises in this? Again, if not common here, difficult to diagnose.

[TheVanguardSix]

Absolutely. It's difficult to test for. It's quite complex.
If I were you, I'd go to the Hospital for Tropical Diseases in London. I'm not sure where you're located but Lyme disease is beyond the scope of a GP. You don't want to lose too much time and I'm not sure how receptive or helpful your GP will be. Have a look at the link below. If you can be seen directly without a referral (which I believe you can), this would be the best option. Ring them tomorrow.

www.uclh.nhs.uk/OurServices/ServiceA-Z/HTD/Pages/Home.aspx

[TheVanguardSix]

Dr. Peter Chiodini (on that list within the link I just posted) is most likely the guy you want to see, since his infectious and tropical disease specialty is parasitology.
Good luck, OP!

[penguinsandpanda]

Thanks very much. I did mention it as soon as I got ill but got told it wouldn't be. It may well not be but the symptoms are such a close match. I am not far from London so will check out uclh, that looks like what I need.

It could well be something like CFS too but coming up with people misdiagnosed with that who have Lyme so wanted that ruled out first. Thanks very much.

[penguinsandpanda]

Looking at ULCH self refer seems to be within 6 months - damn - but have phoned GP and also have private insurance. It does look like where its best to be and will keep pushing for this. Holiday was in August. Thanks very much.

[penguinsandpanda]

I have just called doctor, a bit dismissive saying I should have been in at time but I did go to doctors before but they have agreed to doing the two Lyme blood tests which is a start.

[Mrsknackered]

That is a start. Sorry you have to fight for this penguin

Let us know how the testing goes

[swingofthings]

The rash you've had, did it come immediately (within 24h) of the bite (the day you were there) or days later?

I've done a lot of reading on Lyme Disease as I was bitten by what I'm pretty sure was a tick when I was walking in long grass in an area known for them and as I developed all the symptoms of the disease, albeit 3 months later, it did get me quite worried. However, the rash came up that one evening and didn't look like the typical rash associated with Lyme disease. It was very red around the bite (which had a blood bubble over the break in the skin) and then gradually turned into a big bruise that lasted about 1 week.

What I read though is that the typical bull eye rash that is a sign of Lyme doesn't show until a few days later, sometimes weeks which reassured me a lot. I've also read that you can get an allergic rash from a tick bite, but it doesn't have to be Lyme. Only about 5-10% of ticks have the disease.

I've asked to be tested anyway (despite the unreliability of the tests), still waiting for the results 2 months after testing! I'm not totally ruling it out but after reading the above, I think it's more unlikely that I've got it.

Just to add, you say that your results came back with a diagnosis of Anemia. All the symptoms you've listed can be caused by Anemia. How severe was it? Was it Anemia as a result of low iron? Have you started treatment for it?

[penguinsandpanda]

We went over on 15th and went to rainforest a few times including on 23rd, didn't notice being bitten but rash appeared fairly quickly after 23rd, all in one go like a perfect red oval flat. It was not the bullseye one but does match some Lyme rashes exactly but also other rashes look similar so not clear. Apparently 30 percent get no rash and the rash isn't necessarily where you were bitten.

Started feeling ill 2 weeks or so later. They've told me blood tests come back in a week, hope its not 2 months, mine are going to Royal London. Anaemia is very mild and FBC was back to normal at hospital with me taking otc Feroglobin.

[penguinsandpanda]

My daughter said she had seen a red spider on me where the mark appeared but she's 11 and a "spider" could be a few types of insect.

I would definitely chase a result after 2 months as Lymes progresses badly, they have lost some of my bloods, would check that hasn't happened.

Thanks very much Mrsknackered.

The ambulance staff said they suspected anaemia plus immune system failure but its what's causing that failure. Doctors aren't much use, they just say pick a symptom and only seem able to do one at a time and want me to diagnose or I get you are imagining this though they are good for referring to hospital one symptom at a time but I have about 10-20 symptoms and its worsening. Feeling quite delirious with the dizziness quite often and seeing things which I know aren't there though does improve with rest and antibiotics but reappears every 2 weeks or so.

[swingofthings]

Unfortunately in my case if Lyme were to blame for symptoms it would be too late as the walk/rash was almost 3 years ago but I am pretty sure now it's all caused by a mixture of bit B12 deficiency and stress.

Totally sympathise with the dizziness as have been living with it for all this time. Some days are better but it always come back when I am most tired.

[penguinsandpanda]

I've seen quite a lot of cases online where its only picked up after years. I think its pretty hard to treat if not caught early though would still rather know. I'm not sure with my rash - I saw a site with 5 types of Lymes rash and its an exact match on one - the uniform red lesions one - but rash didn't grow and that rash looks similar to others, its not as obvious as the bullseye one. The symptoms I've had are 100% match on others diagnosed with it though looks like some have had to do lots of tests to get a diagnosis.

[swingofthings]

Symptoms are difficult because they are very similar to symptoms of other conditions, the main one being vit b12 deficiency, but also stress and anxiety, ME/fibromyalgia, In your case though, you had the flu like symptoms three weeks afterwards which is more characteristic of Lyme.

It's good you will get both tests at the same time as these tests are really not completely reliable but with both, you get a better chance of an answer. What made your GP say that it couldn't be Lyme when you first mention it?

[DixieTrix]

I have fibromyalgia, a lot of your symptoms could fit a fibro diagnosis. Although they have no firm idea what causes it Lyme Disease is mentioned as a possible trigger.

[penguinsandpanda]

When I first went I was a bit vague and had about 10 symptoms and got told to pick one. I asked could my Costa Rica trip be related as I had worsened a lot after and got told no as I had symptoms before. I didn't mention Lyme or the rash, I just mentioned rainforest and cuddling a sloth and asked about rabies but didn't have much idea. The issues I had pre trip though were bleeding and urine related and a bit of dizziness probably from bleeding and these all could be unrelated. I was still fairly active before going into London everyday and doing activities at each weekend just feeling a bit run down one day a week.

About 3 weeks after I started with extreme tiredness, flu, bone ache, muscle ache, pins and needles, odd night sweat, incredibly dizzy can't go out without help, mainly bed bound last few months and worsening, started getting hallunications and the chest pains. Worsened about November time. Some weeks I am only awake for the 25 hours I work. Work let me wfh 4 days a week but haven't made the 5th for ages. Have anxiety but unchanged from last year and physical symptoms off the scale in comparison. Doctors initially saying go for cancer tests, dismissed peri menopause but I am mid 40s, dismissed anxiety but cancer tests so far negative. One more cancer test but expected negative. It could be fibromyalgia / cfs but I also get infections every 2 weeks and worsen a lot, doctors do think its just lots of little issues together like urine causing utis, anaemia etc plus the surgery and they may well be right but no sign of improvement. I read accounts of someone with Lyme for a year last night and I could have written every word but its a stab in the dark but I am at the point of having to give up working and desperate. Antibiotics always seem to help for a while, the feroglobin takes away the pain but not the flu, struggling to balance etc Thanks very much for the help.

[penguinsandpanda]

I have got quite bad confusion / inability to think at times - I can work things out eventually but its strange it takes all my energy to work out the most basic of things whereas I am in a very academic type job and normally no issues at all. It took me 5 minutes to work out who are Chief Exec was and I have seen him loads of times, that sort of thing.

[Nettleskeins]

penguins could you have any reaction to a malaria drug like Larium? just checking in on this thread as I was concerned about Lyme myself last year, but I just thought of that possibility as I knew someone with a very bad reaction to Larium.

[penguinsandpanda]

Thanks very much - never taken anti malaria tablets so can't be that but was on double antibiotics plus painkillers when most of the seeing things happened (though first time was after I collapsed) so could be some drug element in it. Might have taken cocodomal before fainted too as that was just after surgery. It improved as antibiotics went on though so felt more like illness causing. I've read antibiotics can give false Lyme negative results so I am waiting to test 10 days after old antibiotics though have cancer test on 23/24 so maybe after that.

[trickyboots]

My dh had a few consequetive courses for suspected lymes as false negatives v common on test and he displayed all other symptoms.

[trickyboots]

Gp has no knowledge. Nurse friend of ours identified it and we printed stuff off for gp who to their credit went with it

[penguinsandpanda]

That's good they treated your DH anyway Tricky

[swingofthings]

Just to say pinguinsandpanda that we are about the same age, very similar symptoms and like you went from being very active both at work and social (was running half marathon and triathlons) to having to be signed of sick and hardly able to get through the day.

I've had so many days to ponder what was wrong with me. I'm control freak and not being in control of my body is the absolute worse feeling. I was prepared to try everything, so two months ago, I started to take vit b12 injections as all my symptoms were indicative of a deficiency and some blood test came back abnormal (not vit b12 but shape of red cells). However, those symptoms, although rarely was also those narrated by women going through the perimenaupose so decided to try hrt.

I have to say that although far from being my old self, and after months of feeling dreadful, I'm very weary to say it, but I think I am starting to feel a bit better. I still have some of the symptoms (tinnitus, tiredness, lightheadness and dizziness and pins and needles) but not half as bad as it used to be at all. So Vit B12 or hrt?

To add to this, I have started to write a daily diary of symptoms and life event, and this has made me realise that there is a definite link between my symptoms and stress. Not so much anxiety, but stress in that I overthink everything, get bothered about things that shouldn't matter. I am starting to think that a lot of those symptoms are indeed stress related after months of being under horrendous stress and that I am only now starting to learn, very slowly to de-stress.

Still waiting for my lyme results, but although when I was in the mist of the worse symptoms, I was convinced that's what I had, I am now on the opposite side and would be very surprised if it came back positive.

[penguinsandpanda]

Thanks very much Swingofthings Glad to hear you have found something that helps. I have had a couple of women on here say they feel like this mid to late 40s and been told its peri (though seems to be without other tests) and most women don't seem to have it anything like as bad. But I wouldn't be amazed if it is that even though I have had three doctors are adamant its not. My periods have gone to 24 days inbetween, my fibroid shrank a lot which is a sign of low oestrogen, my pains go with Feroglobin implying a vitamin deficiency maybe magnesium. My Mum also used to complain like crazy about the menopause and go on about HRT saving her life and she normally didn't complain. I think its more likely peri than Lyme but just want to rule serious things out as do the doctors but they are just concerned about cancer though say it shouldn't be. Not bothered about cfs / fibro diagnosis as no real treatment options. Very interesting you were as bad, sorry to hear that. I will just go with what Lyme result says, its supposed to be 50-80 percent accurate. Thanks again.

[swingofthings]

Peri is a very odd thing. I don't have any of the 'normal' symptoms, hence not prepared to accept it was that. No hot flashes, no night sweats, no sudden burst of anger, if anything, I've mellowed a lot! All my symptoms are neurologically related, in addition to the very poor sleep that is indeed common.

My mum didn't have these symptoms when she went through it, but she too had medical issues that would normally not be associated with the menopause at all (skin issues amongst other things).

Time will tell -and that's what I hold on to, just focusing on one day at a time- but I wouldn't be surprised is my symptoms were triggered by a number of things happening all at the same time, feeding off each other, hence making it hard to diagnosed.

Like you, I needed to eliminate possible diagnosis, including a brain tumour as my balance/dizziness were so bad at one point, and then along came the headaches. Thankfully MRI came back fine.

What is very odd and hard to explain is that I have a 'way' I feel that makes me feel miserable especially when it gets worse. It's a mixture of feeling very lightheaded, feeling weak and totally drained, really struggling to concentrate and feeling faint, with tinnitus in the mix. This is this feeling that at times got really bad, at which point my balance was affected, I couldn't stand being in a noisy room (even if it didn't feel that noisy to others), my heart rate would go up, it even affected my eye sight and I just felt absolutely dreadful.

This feeling is not completely gone and hits me most when I am involved in long conversations, meetings when I need to concentrate on what is said, and I still feel out of control and therefore a bit scared when it happens, but not half as bad as it used to be.

There is a sense of relief when results come back and are fine. The Lyme results were still not in last time I saw my GP a couple of weeks ago, I'm seeing him again next week so will ask, but I have kind of put it out of my mind. Indeed, its accuracy is not great, so that doesn't help, although I think I read it's more likely to be later rather than sooner after being infected.

Whatever the issue, don't let it lie and try to find answers, even though it's exhausting to do so.