Could it be Lyme Disease after all this time??

Ok so here's my story. Last year in February I suffered from an extremely stressful day when me and my pregnant wife had to shoot over to London after an echo scan revealed a measurement in our baby's brain that the local hospital wasn't happy with. This brought back a lot of feelings of 6 years earlier when our little girl died suddenly at 27 weeks pregnant. Luckily this time things turned out to be ok, the specialists in London were happy with the way things were with our baby.
Driving home that night I started to notice more and more that my shoulder and chest pain were worsening - a pain I had previously had after a stressful work trip to Romania, the previous November.
The next morning I ended up in hospital as I could hardly breathe by now, and laying back was extremely painful. After being seen by many doctors I was finally diagnosed with pericarditis and a pericardial effusion, along with a pleural effusion (inflammation and fluid on the heart and lungs). My treatment was various anti inflammatory drugs, steroids, etc but the inflammation kept recurring and putting me back in hospital all summer. Inbetween the attacks I was suffering from various symptoms - such as unrefreshed sleep, muscle and joint pains, tinnitus, hyperacusis, chest pains, alcohol intolerance, sensitivity to sunlight (to name a few).
The hospital diagnosed the original attack as viral, as blood cultures were coming back negative. Now every doctor I saw (which was many) I explained about how I hadn't been feeling right for a few years now. It seemed like every time I got I'll, my legs would be killing me from right inside the bones. I also found myself very tired and fatigued in the afternoons and after big meals. I explained to them that this had all started after I was out walking the dog in September 2007, when I got bitten on my ankle, walking through the local woods (Langdon hills, Basildon). At first I thought 'what was that', scratched the area, noticed a bit of blood and thought nothing of it. about a week later the area was swollen, was red, and was painful to put my foot down (raising the leg eased the pain). The local GP diagnosed this as cellulitis, and gave me a 5 day course of anti biotics. I should point out that it seemed like every time I got bitten by a gnat or something, the area seemed to swell up after that episode.
Now it's almost a year later from the pericarditis, and I am still managing my fatigue, I have various brain fog issues, short term memory, trouble with cognitive thought and problem solving, and hyperacusis when I get stressed, or 'over do it'.
At first I thought that the illness last year may have triggered Chronic Fatigue Syndrome, but that was until I read about Chronic Lymes Disease - for which I seem to tick all the boxes.

I know this has been an extremely long note, but I would like to know you thoughts:

Does this sound like Lyme Disease?

What treatment/prognosis can I expect?

I'm currently trying to get a positive diagnosis. My GP isn't convinced, but I have been referred to a Rheumatologist who is an auto immune expert (on the NHS). I've explored the private option, but there is a long wait to get into the nearest specialised place near here.

PS, I'm sure I've missed some other important info here - feel free to ask any questions, thanks

So sorry to hear you are not feeling well. Of course many of us with lyme have gone through the same experience of misdiagnosis and a quest to find out what is REALLY wrong with us. We all have that feeling that they are missing something. Most of my symptoms also came on after a stressful experience as you will learn is common. The human body is just a machine, so when something is working overtime, the entire machine struggles to keep up and that is when the body starts to recognize something is wrong. Unfortunately lyme is a relatively new disease and there is still a battle to get it properly recognized, researched and treated.

Your symptoms do seem to fit with lyme. Is there a way for you to find an LLMD in your area? The reason being is that infectious disease doctors and rheumatologist follow a different protocol for treatment and diagnosis and does not agree with those of us with chronic lyme. I made the mistake of believing that this could not be true and alot of time, money and health seeing an infectious disease doctor who diagnosed me with MS and syphllis. Amazing huh?

Hang in there and research, research, research. We are here to help you and you will find unbelieveable informatino here. This forum was truly a lifesaver for me. Start by reading "New to Lyme - Start here", the first thread on the forum.

Welcome TB,
I'm really sorry to hear of what you have been through, but you've found a good place to come to learn about these infections!!

The tests for Lyme Disease are notorious for giving false negatives! Not only must the bacteria not be hiding from the immune system- which is the main goal of this bacteria - but you must also have one of the three or four strains of Lyme that are tested for. If you have been infected with a different strain, of course the test won't be positive.

I don't remember all that's been said about about Breakspear, but we have had quite a few people post about it. I would suggest that you use the search function here (top of this thread, on the right corner in the blue bar) and enter the search term "Breakspear". It'll bring up the posts concerning it. I'm sure it'll be helpful!

Hi tb, you've found a good place here. I'm in the UK and please let me tell you that the NHS will NOT assist you in the way you need help. If, by good fortune and if the NHS give you one, you have a positive ELISA (they will not give a a WB unless the ELISA is +) they will prescribe you with 2 weeks of Doxy and tell you you're cured or mad, they seem to be totally anti LD. Sorry but you will be smacking your head extremely hard against the proverbial brick wall. Believe me I've seen all the Dr's you'll be seeing and had all the frustration you'll be feeling.............................................don't bother with the NHS........

I'm up in Derbyshire and and Breakspear was my hospital of choice, they are fantastic, very knowlegable but sadly fairly expensive. I'm now off ABX since Oct 2010 and doing well with only some slight "perminant" damage to a couple of joints and nerves. I was lucky as I saw the tick and had the bulls eye rash but nothing prepared me for what was ahead mentally and phyically, I was taking large amounts of ABX for 2.5 years and spent around £7,000 - 8,000 in visits to BS and treatment.........now it was worth every penny. Make that app with Breakspear and get there ASAP......oh and sorry but make sure you have of lots money available.

If you want to know anything else you might think I could help you with I'd be quite happy to post on this thread....or another....or if you'd rather my email is [email protected]..... feel free to mail me whenever as I may have some answers you can use in respect of the UK system.

I hope you get to the bottom of your illness and get the correct treatment....you've found a good bunch of very smart Lymies who I'm sure will offer lots of support to you as they did me.

Cheers Mik

An update...
I went in to see the Rheumatologist with very low expectations. He asked me lots of questions and gave me a physical exam. He said something along the lines of "well, there's definitely something wrong, but you don't need me to tell you that right? It's an auto immune disorder of some sort". He's ordered lots of tests, blood tests, CT scan of chest, pulmonary test. I suggested Lyme and he smile and said 'you haven't got Lyme Disease'. I argued my case and the bite, and he started to come round a bit so he added Lyme to the blood test list saying 'OK, lets test for Lyme, why not'. So he was OK in the end. I'm not expecting the Lyme test to come back positive, but at least I fell now he's on my side to get this thing sorted.
I'm still fairly certain it's Lyme, so I am keeping the Breakspear appointment as a back up.

Yeah, I'm expecting that to be the case. I'm still going to peruse the Breakspear Hospital (private route) regardless of hi diagnosis. Thanks for the help and interest, I will keep you updated with any developments. In the meantime I wish each one of you good health.

Hi Tb,
I'm so sorry that you too are getting the typical run around by those that are in power, but yet are still uneducated! Hang in there, I believe your choice to go to Breakspear will be your lifesaver from what I understand and have read from those who have been there and gotten their treatment.

I personally don't feel like that the Salt/C protocol a safe option - simply because that's a lot of salt to be taking - and I'm on an increased sodium diet because of low blood sodium!!!

I would encourage you to rather than follow that route, start off improving your diet, start drinking lemon water -this help the body maintain an alkaline state, bacteria and viruses like an acidic body. Start eating as healthy as you possibly can - lots of colorful vegetables!!, taking a few supplements - the vitamin C you mentioned and a good multi-vitamin and multi-mineral formula, magnesium, and detoxing!! We have a great post about detoxing in the "New to Lyme?" thread (by the way, have you read through that yet? It has a lot of important information in it!). The detoxing info is in the second post down about 1/2 way through that post.

I wish you the best and thanks for the update!!

Thanks for the responses and words of encouragement. I've started on lemon water, and will look into getting some magnesium supplements. I'm taking a multi vitamin and vitamin c already, along with pain killers and anti inflams. I do feel like I'm detoxing, though I'm not on any antibiotics yet.

I'm eating healthier than I ever have (though I've always enjoyed cooking), but daily life is a struggle as I have a young family (8 month old girl and 3 year old boy). Saying that, I'm a pretty positive person and the kids are good at spurring me on.

Hi tb,

Your story reminds me so much of mine with the chest pains, anxiety and such. Only I did test positive for Lyme 5 years ago. I was given a round of doxi and sent on my way and told never to come back as there was nothing more to do for me and I would always test positive. I had cysts in the corneas of my eyes, insane fatigue, horrible joint pain, memory loss, confusion, Restless Leg syndrome..shoot, seriously, you name it I had it. I am now suffering from all those symptoms minus the eyes and chest/heart pain. I have severe neuro symptoms as well.

My husband and I also love to cook and we are definitely foodies. I eat pretty darn healthy in general, although, sugar is a love of mine that I've given up since 2 weeks ago (except for the ocassional low sugar gluten free cereal treat LOL) I have gone sugar free except for fruits, as low carb as I can except quineoa and oatmeal and an ocassional brown rice sushi, and lots of wild caught fish. If I eat meat, it's going to be antibiodic free, organic and free range, no hormones.

I have been told by every dr I've seen that I've mentioned Lyme to all these years, that I didn't need to retest because I'd always test positive and that Lyme never killed anyone. I've been told I had Fibromyalgia, etc. It sucks to trust your dr only to have him/her betray you!

I'm seeing an LLMD (thanks to a generous recommendation from members on this forum) in a few weeks and I can't wait to get answers.

I wish you the best and I hope you can get to a good LLMD asap.

So glad you got a clear diagnosis and are getting treatment!

Hope you see some improvement soon.

Hi Kirsty - thanks for the advice. My GP has been as helpful as possible, and wrote to Breakspear. She wasn't convinced of my own diagnosis, but she did everything within her limited power to help me. She is doing what she can for me regarding prescriptions, just Doxy at the moment.

A bit O/T I'm afraid, but just a quick question for mikazmat - how did you know that your nerve damage wasn't a symptom of continuing infection? Just wondering cause I'm in the same situation. I have just stopped my antibiotics but still have remaining nerve pain. My consultant wasn't sure if the pain was lyme still, or perm damage due to the lyme and/or tinidazole treatment (it wasn't getting any better), but since all my other symptoms have gone we are experimenting taking me off the drugs.

Has your pain got better over time, and how long did it take you to stop worrying you would relapse???