Help! I have Lyme symptoms - nobody listens.

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Hello, I am 33, from the UK residing in the Netherlands and I was bitten around three months ago but it could have been a mosquito - strange for January but nonetheless there was no real evidence it was a tick and I had no rash, - I was also in bed.  My gf does have a horse though.

I have the following symptoms:

Flu like symptoms but no flu.
Acute joint pain for three months –esp. pelvic area and knees. Although every joint hurts incl. fingers and toes – incl. jaw.
Strong muscle pain (not aches) for three months – all over body.
Shooting pains.
Pain migrates in both of above cases and is felt all over my body.
Intense – very painful headaches – constant for past month.
Aversion to bright light for past few days.
Conjunctivitis in one eye over night (two nights ago) – could not open eye.  Eyes also red and bloodshot.
Blurred vision.
Facial numbness – only on one side (cheek) about three days ago – now on both sides. – Comes and goes but is mostly there, in fact is there as I write.
Tingling sensation on scalp and face. – feels like my face is ‘moving’.
Pain in middle of shoulder blades – feels inside my chest – on both sides, worse on right shoulder.
Very stiff neck – on one side - right.
Occasional pain on balls of feet.
Constant fatigue.
Cannot sleep every night.
Occasional swollen glands.
Occasional Increased heart rate, palpitations.
Frequent night sweats.
Constant exhaustion.
Forgetfulness, not thinking straight – only recently.
Hearing issues – ringing, ‘popping sensation’.
Swollen Eye this morning - both eyes sticky this morning.
Sinus infection this morning
Ear pain again this morning, usual headache and fatigue, joint pain etc.

I went to a colleague of my usual Dutch Doctor and she tested me for Lyme and it was negative.

I returned to my regular Doctor and told him about my worsening symptoms - that they get worse each day - even my eyes were weeping with conjunctivitis - and he referred me to a generic doctor at a clinic - in ten days from now, no medication - not even for my eyes - one of which today looks like I've been punched.

I read this about Lyme in the Netherlands:

In the Netherlands (pop 17 Million) an estimated 250,000 to 500,000 people suffer from Lyme disease.
Every year several tens of thousands more are infected. . .

The diagnosis of Lyme disease in the Netherlands is normally done by testing for the
presence or absence of antibodies for the Borrelia bacteria in the blood. The tests that
are used, however, are unreliable, there is no general standard, and the results thus vary
depending on which laboratory is consulted. In Europe there are at least five various
Borrelia species, but most of the tests are made on the basis of only one species. Also,
the Borrelia bacteria can elude and suppress the immune system, in which case the test
will not show the presence of any antibodies but active infection still is present. According
to some scientific studies false-negative test results like this cover 50% of the negative
test results. In this way, patients go undiagnosed and untreated and are not recorded in
the official Dutch statistics, and the necessity for strong measures is not made clear.

Anyway in addition to this I had finished some courses of antibiotics - as my doctor had said I had pneumonia (since all this started) - so I'm unsure if any test would work anyway.

I feel my symptoms closely match Lyme - and each day something new seems to appear, I look it up and it's on the list.  

Worst thing is friends and family are telling me it's not Lyme and I am convincing myself it is.  The test was negative and it must be stress and not eating properly.

So now I wait for another ten days, feel a bit hopeless and know if I get tested again it's likely to be negative no matter what.  At least if I can eliminate Lyme then I can find out what else it is.

Any suggestions or advice is very welcome!!

[JackieCalifornia]

Welcome to MedHelp Lyme --

I am sorry to hear you are ill.  Sadly, many of us have experienced symptoms and problems very similar to yours, so I think you are wise to continue pressing ahead to find out what is going on.

Many of us never saw a tick, and in winter ticks are still around, on pets and people both.  In North America, the tick that carries Lyme is usually a very tiny one, like the period at the end of a sentence, so it is not uncommon not to see the tick.  Also, perhaps half of us (or more!  who knows) never have a rash either, but mainstream medicine still usually requires a tick and a (round, bullseye-shaped) rash for diagnosis.

I just searched online for "lyme europe" [but without the "quotes"] and found a number of websites that may be helpful to you, much like this MedHelp site, only they will be better able to connect you with resources near where you are.  

Finding an understanding and broadminded medical doctor is the first and most important step, so I urge you to do that in parallel with the appointment you have pending.  The faster you move against whatever infection you have, the better.

I understand that there are different strains of the Lyme bacteria in Europe than in the US, but the issues are the same.  Your MD should also consider possible co-infections carried by the same ticks (or other insects, like your mosquito; I am not persuaded ticks are the only vector) and run tests for those other illnesses which your symptom constellation suggests.  In the US, about half of the Lyme ticks are said to carry co-infections.  Co-infections must be tested for separately and sometimes require different treatment as well.

For what comfort it is, all your symptoms I have either had myself or know someone who has.  Everyone is different in how they express the infection, and co-infections complicate the picture, which is why an experienced Lyme specialist is so important to locate.  

I gather that the UK MDs are not keen on diagnosing Lyme, but I believe there has been a good bit of work done in Germany on the topic.  I don't know about the Netherlands.

Lymeneteurope [dot] org pops up in the search list at or near the top -- do a search and see what you come up with.

The premier group of Lyme specialists in the US is ILADS [dot] org.  Under the tab 'about Lyme' at that website, you will find lots of information.

About having already taken some antibiotics, that would not necessarily produce a negative test result, but in fact might do the opposite.  Lyme has a unusually slow reproductive cycle (like leprosy and tuberculosis bacteria, which also divide very slowly), and long courses of antibiotics are the usual treatment (a year or more, depending on response and co-infection status).  Thus a short course of antibiotics are not likely to give you a false negative ... that said, however, Lyme has a trick of sequestering itself in so-called 'bio-films', slimy structures that hide the Lyme from the immune system, so false negative test results are not uncommon.  Another aspect is that when testing is done after a short course of effective antibiotics, the test results may actually be more positive, because the antibiotics may stir the immune system to produce antibodies.  Rather complex, you can see.

There is a lab in California called IGeneX that runs a blood test different in nature from the usual ELISA/Western blot tests used here (I don't know what's usual in Europe).  Lyme specialists (often called by patients as a shorthand identified LLMDs, for Lyme-literate MDs) often use IGeneX testing, as it is more reliable and descriptive.  They have a website if you want to read up on their testing approach.

I am NOT medically trained, but have been around Lyme for several years, among my friends and family and myself, so what I say above is not necessarily medically accurate, but reflects what I have encountered.  Check out the websites online, and take it from there.  You sound well equipped mentally (tough and determined) to deal with it.

Let us know how you do and if you need anything further.  Best wishes -- and don't give up!

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In fact a classic example of my recent forgetfulness.

I'm not 33, I was 36 last week. :(

Myself