Lyme Disease

[Hes]

It would be worth getting a doctor to look at it whilst its red Adnan in case they can identify the rash.

My Lyme Disease test showed up as negative but we still don't know what's wrong with my knee. It swelled up massively coinciding with a load of insect bites and a bladder infection (could be coincidence or could be relevant as its a sign of reactive arthritis). It didn't hurt, just felt numb, and then about 36 hours later it was agony and I ended up in hospital. I haven't run for 4 weeks now as I can barely walk. The swelling has reduced a lot but the pain is still awful at times and it reduced me to tears when I tried to walk the dogs this morning which isn't like me, I'm normally pretty stoical. I'm controlling it with ibuprofen and paracetamol and am waiting for an MRI scan but my gp thinks its reactive arthritis (my consultant doesn't but he also lied about my blood tests so I don't trust him). I'm fed up but am going to try and get referred to a rheumatologist. It could still be due to Lyme as the tests sometimes come up as negative when they are positive but I haven't had any other symptoms (flu like , lack of energy etc) so its probably not.

I also think its really weird that Stolly and I have both ended up in hospital with inflammatory syndromes within a couple months of each other having been totally healthy for years. Its hard not to think they might be connected.

[Adnan Khan]

Sorry to hear that Hes. I might go to walk in because the waiting time for my GP is normally good few weeks. Hope you get sorted soon. No more wearing shorts now!

[ghost]

It would be worth getting a doctor to look at it whilst its red Adnan in case they can identify the rash.

My Lyme Disease test showed up as negative but we still don't know what's wrong with my knee. It swelled up massively coinciding with a load of insect bites and a bladder infection (could be coincidence or could be relevant as its a sign of reactive arthritis). It didn't hurt, just felt numb, and then about 36 hours later it was agony and I ended up in hospital. I haven't run for 4 weeks now as I can barely walk. The swelling has reduced a lot but the pain is still awful at times and it reduced me to tears when I tried to walk the dogs this morning which isn't like me, I'm normally pretty stoical. I'm controlling it with ibuprofen and paracetamol and am waiting for an MRI scan but my gp thinks its reactive arthritis (my consultant doesn't but he also lied about my blood tests so I don't trust him). I'm fed up but am going to try and get referred to a rheumatologist. It could still be due to Lyme as the tests sometimes come up as negative when they are positive but I haven't had any other symptoms (flu like , lack of energy etc) so its probably not.

I also think its really weird that Stolly and I have both ended up in hospital with inflammatory syndromes within a couple months of each other having been totally healthy for years. Its hard not to think they might be connected.

That sounds awful. Both of your conditions could be a co-incidence but there are also a lot of infections other than Lyme that can cause a reactive arthritis and pericarditis. Diagnosing these usually relies on casting a big net in terms of tests. One possible cause is a streptococcal infection which will probably have been checked for in one of your blood tests(it is called the ASO titre)- this can cause an arthritis of one or more large joints as well as pericarditis. There was a mini epidemic of it this summer - it causes scarlet fever in children. Did either/both have a sore throat in the weeks preceding your symptoms? Some of the bacteria that can cause badder infections can also cause reactive arthritis. All really frustrating for you though -I hope you get better and back to running soon!

[Hes]

Thanks Ghost. We both had bad stomach upsets for a few days which I put down to us drinking from a stream coming off of Ingleborough (it was a hot day and the stream was just a trickle, bit stupid of us!). However, that was a week before Stolly ended up in hospital but two months before I did and my GP thought it was unconnected.

I wondered if running the Lakeland 100 might have lowered my immune system but I don't recall having a sore throat. They did test my urine and my blood (a few times) and also the fluid on my knee. The only results that were out of the ordinary was that my white blood cell count and my blood protein levels were really high when I was admitted but were going back to normal five days later when I had more tests at the doctors. The consultant now says that I didn't have a high white blood cell count and that my protein levels are only a bit high and that could be because of an injury. I think he was looking at the later tests but when I pointed that out he said that he wasn't. I'm a bit worried that he was trying not to lose face because he had two students in the room but my gp had specifically asked me to question him about the blood tests because they weren't normal for an injury. Plus I had no bleeding or bruising, can't recall actually injuring my knee and yet the pain is excruciating. Its very frustrating.

That sounds awful. Both of your conditions could be a co-incidence but there are also a lot of infections other than Lyme that can cause a reactive arthritis and pericarditis. Diagnosing these usually relies on casting a big net in terms of tests. One possible cause is a streptococcal infection which will probably have been checked for in one of your blood tests(it is called the ASO titre)- this can cause an arthritis of one or more large joints as well as pericarditis. There was a mini epidemic of it this summer - it causes scarlet fever in children. Did either/both have a sore throat in the weeks preceding your symptoms? Some of the bacteria that can cause badder infections can also cause reactive arthritis. All really frustrating for you though -I hope you get better and back to running soon!

[Hes]

I just spoke to my gp and we went through the blood tests. My White blood cell count and my protein count were high when I was admitted to hospital and he also said that my ESR was four times normal levels! He's referring me to a rheumatologist and he has suggested that I consider paying for a private consultation in the first instance as the waiting list is so long. I'm going to because I'm going crazy looking at the hills and not knowing when I'll ever get back in them again

[ghost]

Right - the raised ESR/WCC/protein levels are all non-specific markers of infection/inflammation but don't tell you what the cause is. When you were in hospital their main concern will have been to exclude a septic arthritis ie a direct bacterial infection of the joint which needs aggressive antibiotic treatment. They presumably exlcuded this when they aspirated your knee although it is not clear if your raised white cell count was in the knee fluid or your blood. Your consultant may not have explained properly which was which - with a septic arthritis there are raised white cells in th blood and joitn fluid but presumably they did not grow any organisms from your joint fluid otherwise that would have proven the diagnosis. There was obviously something going on though.
A reactive arthritis comes on following an infection and is usually caused by anti-bodies raised against the infecting agent that then go on to 'attack' the synovium of a joint(s)causing inflammation. That is why it can be difficult to pin down the cause as the arthritis can come on weeks after the initial infection. Intersting you both had tummy upsets as gut infections are the commonest cause - campylobacter/cryptosporidium (common on sheepy fells!)/salmonella mainly. This can't really be proven after the event though.
This sort of thing happily usually settles though so don't despair - double frustration for you at the moment though with the amazin weather!

[Hes]

Thank you so much for taking time to write such a thorough reply Ghost, I really appreciate it. Yes, the counts all came from my initial blood tests on being admitted to hospital and they did draw off fluid which they kept in the lab but nothing grew in it so that's good. Apparently the blood tests done five days later were all approaching normal levels except the blood protein one which was a it high but not as high as before.

I guess we'll get to the bottom of it eventually. I had a better day today (yesterday was awful) and it does seem to fluctuate so I'll keep my fingers crossed for another better day tomorrow. The fells looked stunning today, it is so frustrating but I know practically every one of us has had a lay off at some point and I've managed to come back strong from previous injuries so I'll just keep my chin up as much as I can.

[ghost]

Yes - you'll be raring to go after your enforced rest!

[Hes]

I've had some progress with my knee!

I paid to go and see a consultant rheumatologist as the waiting list on the NHS was so long (it was very expensive but worth it). She is certain that it is reactive arthritis triggered by an infection and she drew off some fluid for more tests to check the infection has gone and gave me a steroid injection into the joint. It has been nothing short of miraculous. Not only has the swelling pretty much gone but it doesn't hurt anymore. She said that the pain was from inflamed tendons. I'm going to have physio to rebuild the muscle on that leg and I am starting gentle stretching exercises to get the flexibility back. I've also had an MRI scan so if I have any structural problems, we can address those too. I think I have had a small meniscus tear all year but I'm hoping it won't need operating on and I'm wondering if that weakness caused my immune system to attack that knee when the reactive arthritis started but that might just be me overthinking things. She also said that mine and Stolly's problems could be linked but it would be pretty much impossible to prove it.

I'm now having blood tests for a genetic marker that makes some people more prone to reactive arthritis. If I have it, it means I may get it again but it would be in my records so I'd get referred to a rheumatologist straightaway. My gp says that in all the cases he's treated, none have had further episodes. Stolly has helpfully pointed out that that could be because the patients were elderly and have since died...!

[Hanneke]

Hate to say this Hes, but my thoughts for both Stolly and you were a reaction to an infection with Lyme and/or one of its co-infectiosn.

As you know it caused an aggressive reactive arthritis in my knees and neck. I also have a friend whose main symptom is Lyme carditis and the heart muscle is inflamed from it... very similar to Stolly's issues.

Testing is very unreliable so negative lyme tests mean nothing. I have had two blood tests and my synovial fluid has been tested as well as a synovium biopsy. All negative. However, I had antibiotics between being bitten and being tested, which messes with the results as well, and after almost 2 years of infection, the body stops producing antibodies as the infection has become systemic.