Could I potentially have Lyme disease?

Medical topics with questions, information and discussion related to Lyme disease and other tick-borne diseases.
Post Reply
Posts: 3
Joined: Mon 18 Apr 2011 14:42

Could I potentially have Lyme disease?

Post by Paul_H1 » Mon 18 Apr 2011 18:59

Hello everybody,

I was wondering if somebody with Lyme/suspected Lyme could help.

For a number of years now I have suffered from depression and general fatigue, although I have remained physically active and employed. Over the past 3 years these and additional symptoms have become progressively worse. So much so I was going to book a doctors appointment this week, as I felt the symptoms were becoming so acute they were seriously compromising my ability to carry out my job safely (Truck Driver).

Those symptoms are:

Acute fatigue (I want to go to sleep constantly, and no amount of sleep rectifies the problem)
Brain fog (inability to have spontaneous conversation, and construct coherent sentences; word block)
Reduced concentration
Balance problems (I stumble into things quite a lot recently)
Co-ordination problems (dropping things and general clumsiness)
Mild hallucinations

Both my partner and I like to go walking in the country, and my partner enjoys out door swimming (lakes, rivers). This morning she bumped into an article about Lyme disease on a swimming website, and she read out the associated symptoms. Coupled with the symptoms I have stated above, she read out others that I also suffer from, and have been to the doctors about - on seperate occasions - over the past couple of years. Things then clicked into place, as I removed a tick from my chest approximately 3-4 years ago with my fingers. I did not seek medical advice at the time, and I did not develop the target rash.

Those additional symptoms are - which have progressed on a time line since my tick bite:

Pins and needles/Tingling in my hands (doctor diagnosed as possible trapped nerve)
Tinitus (I have recently had an MRI scan for the sudden onset of tinitus)
Reduced hearing (I've started to struggle hearing people speak and understand what they are saying)
Blurred vision (I now wear glasses for certain functions)
Occasional shooting pains in my abdomin and chest
Severe heart palpitations (they occur irregularly, but are severe when in progress, and last for hours)
Severe all over body itchiness (over the past 6 months i have become very itchy to the point where i make my skin bleed)
Mild facial and verbal ticks
Aching joints
Shooting pains in my ears
Increasingly reclusive behaviour (I only go out of the house when required and i tend avoid human contact)
Stiff back & neck
Sensitivity to light
Loss of libido
Adverse reaction to alchohol

In retrospect these symptoms have only occured since the tick bite, although I have tended to live with them and put them down to certain things, such as: getting older (only 39); central gas heating (used over winter); manual labour; many loud concerts over the years; depression etc etc.

All of these add up to me feeling very poorly, to the point where I can barely function. I'm managing to hold on to employment with my fingernails, but I am very worried for the near future.

Could you please let me know if I might have a case for being tested for Lyme disease, as some sort of diagnosis or direction for diagnosis would be such a relief for me and my family.

I hope that all makes sense

Kind Regards

Paul Hattle

Posts: 1448
Joined: Wed 14 Nov 2007 1:19
Location: Connecticut, USA

Re: Could I potentially have Lyme disease?

Post by Claudia » Mon 18 Apr 2011 22:13

Hi Paul,

I am sorry that you are feeling like this. These are many of the symptoms of Lyme disease, but also of many other illnesses and conditions.

Where do you live and spend outdoor time over the years? Was the tick you removed engorged? Was it a small deer tick or a larger size tick like a dog tick?

I hope that you are making an appointment with a very good and thorough doctor that will do a complete blood work up and physical exam and carefully rule in or out all the various possibilities from there. I would ask for a Lyme test to be included, a Western blot, along with testing for the usual tick co-infections.

You've probably read that Lyme disease is a clinical diagnosis, with lab tests for Lyme antibodies being supportive because they don't always give the true picture. Late stage Lyme disease, especially with no documented history of an EM rash along with the "classic" flu-like symptoms and swollen knees, is not an easy diagnosis to make with any real certainty if you don't have significant Western blot results helping to support it. Get a copy of your Western blot results from the doctor. Some doctors will mistakenly rule out Lyme disease if it does not meet the criteria for CDC positive for all the bands. You may have a band or bands that are specific to the Lyme disease bacteria and that would be a possibly important piece of the puzzle that could be overlooked if your doctor decided it was a negative test.

Good luck and I hope that you get some answers soon and start to feel better again.

Posts: 3
Joined: Mon 18 Apr 2011 14:42

Re: Could I potentially have Lyme disease?

Post by Paul_H1 » Tue 19 Apr 2011 12:24

Hi Claudia,

Firstly, thank you very much for taking time out to reply to me.

We tend to go all over the place when we go out: Chiltern hills; New Forest; Lake district; Cornwall; South Wales etc. If my poor memory serves me right, I think we'd just been out around the Chilterns where we live. I think it must have been gorging, because I only noticed it when I woke up in the morning. I just thought, ooohh what's that, and plucked it straight off without thinking. I heard a little click when I did it, which I suppose was its jaws being released from my skin. I didn't think anymore about it, and as I said originally, I didn't get the target rash and I didn't experience any flu like symptoms post bite. The tick itself - I think - was quite small, although I don't really know exactly what constitutes as large. Maybe I need to do more research on that, but it was quite a long time ago. Does the type of tick matter? I do have a dog but I've never found any ticks on her - which I suppose makes sense as they where on me ;)

I saw the GP yesterday, and he was mildly responsive to my hypothesis when I pointed out the coincedences. He seemed to know a little bit about Lyme but not enough to give me confidence. I think he is going to start with the usual pre-start checks - generic blood test; Physical etc. I have also had some good news regarding an LLMD from a poster on another website. There seems to be one only 15 miles from where I live. I'm going to google search this morning to see where it takes me. My GP said if I could provide him with an LLMD he would definately have a serious chat with that person about my symptoms.

Do you suffer from Lyme Claudia? It would be good if you could tell me about your experiences if you do. Like you said, all of those symptoms might point to something else, so it would be good if I could putting them into some sort of comparative context.

Thanks again

Paul :)

P.S I've just noticed you're from the US so wouldn't know the places I've mentioned. A number of them are officially listed for known Lyme disease. Probably due to high deer populations. I'm not sure if infected ticks live off other wild mammals, they probably do, but again I'll have to do a bit more research.

P.P.S We also went walking in the White Mountains, New Hampshire, a couple of years ago. A beautiful part of the world. I can safely report no tick incidences from our time there. :D

Posts: 1448
Joined: Wed 14 Nov 2007 1:19
Location: Connecticut, USA

Re: Could I potentially have Lyme disease?

Post by Claudia » Tue 19 Apr 2011 17:03

Yes, the type of tick matters. And when they have been attached for a length of time, enough to become engorged, they are much more difficult to pull off and they get larger, lighter in color, and their body soft. It sounds like from what you've described that yours still had a hard body and was easier to just tug off. That's good as far as the likelihood of that one transmitting Lyme, it doesn't sound like it was attached for very long.

I think mentioning to the doctors that you hiked in the Northeast US is also important because while you may not have noted any ticks or bites at the time, there may be labs that will test for more of the different Bb strains, not just the European ones. It is possible you could have been infected while here and would not know it. The tiny nymph stage of our deer ticks, which carry the Lyme bacteria, are as small as the period at the end of this sentence. Seriously. I pulled an attached one off of me a few summers ago, not engorged, and I didn't even notice it's legs it was so small, I flicked it away thinking it was a bit of stuck on dark sand (I had been throwing sticks into the river for my dog) and it landed on my bedspread, only because I watched it move did I look close enough to see it had legs and was a tiny deer tick.

I don't have Lyme disease, but my son does. Infected at age 12 and diagnosed at 17. He is 23 now and still dealing with symptoms. He had a bulls-eye rash, 3.5 cm across, on his chest near his arm pit. He had been attending an outdoor sports camp for lacrosse where the playing field was bordered by woods and overgrown fields. The kids chased balls into the brush and sat in the shade on the ground during breaks. His rash was visible for over a month before completely fading away, but no flu-like symptoms and he was refused treatment at that time. His symptoms came on gradually and were mainly neurologic, and progressive. Many of the same ones you've noted, but not all.

I should also mention that his Western blot tests were negative at first (his doctor always sends the same blood draw to two different labs so he can compare results), but became positive after starting antibiotics.

That's good that your regular doctor is open to the possibility of considering Lyme and would work with a more experienced doctor in treating it if that was what was diagnosed.

BTW, I've been to the UK a couple of times, including driving around Wales and Scotland (St. Andrews and Edinburgh areas, which I loved best of all). I almost married a British bloke living here in the US.

Posts: 10
Joined: Sat 12 Mar 2011 2:56

Re: Could I potentially have Lyme disease?

Post by 5vforest » Tue 19 Apr 2011 17:48

Paul, it might be worth posting the name of the doctor you've been referred to so you can see if any of us have had experiences with her/her.

The opinions you will get here on the subject of "LLMDs" are generally quite varied, but I find that a good lyme-literate doctor that you can trust is crucial to treatment.

And from reading your list of symptoms, it does sound like Lyme disease could be a very likely possibility, although you shouldn't let that interfere with you getting a full work-up from your GP.

Posts: 3
Joined: Mon 18 Apr 2011 14:42

Re: Could I potentially have Lyme disease?

Post by Paul_H1 » Tue 19 Apr 2011 19:04

Thanks for the reply 5vforest. I'm going to track down the one close to where I live. I also have an extensive list of LD unfriendly GPs which I will use to cross check their name with. I start with a general blood test and medical Thursday.

Claudia - Firstly, sorry to hear about your boy, I hope he recovers eventually. The tick was definately bigger. I would say more the size of a lower case character letter than a full stop. I can't be sure how long the little blighter was on me, because I only discovered it after a nights sleep. I just presumed it had been there for a while. It was definately having a good time, thats for sure. I almost felt guilty for disturbing it. I will also take on board your advice and let the Doc know about my visit to the US.

Thanks again

You nearly married a British guy? Blimey, we can be a grumpy bunch of so and so's you know :)

Post Reply