My general health condition has been very bad in the last 11/2 yrs. since i got bitten by a tick in our local forest.

This morning (march 24, 2005) I woke to the sound of my heart snoring with every heartbeat. a prolonged weezing sound from my chest. At first I thought it came from outside, but slowly, while waking i recognized the source. I phoned the emergency room and was taken by ambulance to the local hospital. The sound had disappeared after i left my bed and i felt better after a while. Even my usual frequent ekstra systoles (or what they are called) didnt show up while i was there) and i was sent home. The story of my last 11/2 yrs, "sorry we cant help you, call your doctor".

But to the beginning. I was 28 at the time and had always been fit as a fiddle, maybe a flu every 5 yrs at most. I had a really good general constitution, and always biked to work etc.
After finding a tick on me 36 hours after a trip to the forest in sept. 2003, and removing it, i got an infection in the small sore on my left hip but NO EM, just a red are around the wound in appr. 1/2 inch diameter. The wound didnt close for 4 weeks appr. After 1-2 wks i awoke with extreme dizzyness. I had problems with my balance and my face felt like it was asleep (it wasnt paralysed). My doctor said it was a virus on my balance nerve (whatever that is). And sent me home to bed. I was in bed for 10 days with flu like symptoms (fever, tired muscles, dizzyness, fatigue, sore throat, pain in my glands, headaches, twitching in muscles, ear pain and ringing in ears, tremors, and poor attention span). Shortly after my left eye started wobbling and i couldnt control it very well. This persisted for several months, on and off. I also started having pains in my joints and muscles and testicles. Also one day i suddenly couldn't swallow my food and a lump of bread got stuck in my chest. never tried that before!

After a restaurant visit a month later i got stomach pains that were terrible and from then on my digestive system has been acting weird ever since. Pains from the stomach and abdomen, constipation, swollen stomach, etc. I lost 8 kilos (from 78 to 70 kilos (172-154 IBS), I'm 184 cm's (6 foot) tall) within 3 months.

In oktober/November my nose clogged up totally and I was checked for infection in the sinus. Nothing out of the ordinary my ear, nose, throat doc. Said, but he gave me 14 days worth of primcillin. My sinus problems slowly got better the next month, but the other symptoms persisted.

In December 2003 i had a gastroscopy to check for ulcers, nothing was found except a hiatus hernia. I never had any reflux problems before. I was started on pantoprazol (pantoloc, nexium). My stomach/abdominal pains didn't go away. In march my doctor told my that my blood showed no infections and that my problems were all in my head. If I wanted help I needed to find another doctor he said. So I did. My new doctor start from the beginning. Blood found traces of a campylobacter infection (I guess my restaurant visit, where I ate spare ribs in a restaurant now famous for its many guest with food poisoning). He started me on 14 days of Ciprofloxacin, since I still had these symptoms (not all at the same time, but recurring in waves):

1. Fatigue
2. Pain in glands (throat, under ears, near testicles, arm pits.
3. Sore Throat
4. Testicle pains
5. Chills, Flushing in face
6. Weight loss
7. irritable bladder
8. loss of libido
9. upset stomach and abdominal pains
10. Constipation, nervous bowel function
11. Chest pains, rib pains
12. Shortness of breath
13. Heart palpitations, extra systoles (pulse skips?)
14. Jumping joint pains, worst in knees, elbows, hip and fingers.
15. Stiffness in neck
16. Painful muscles (tired like I ran 10 miles) /like acid in the muscles after overexertion
17. headaches
18. twitching muscles
19. tingling in my teeth (upper mouth) and my chin (under my eyes)
20. eye problems (can't use contacts anymore)
21. ringing in the ears
22. bad balance (not so bad as in the beginning, but still nowhere optimal)
23. my nails had become ridged like an old man
24. my skin at some places hurt like it was burned for a couple of days.
25. A pain in the chest left side (heart side) in the soft place just under collar bone. This pain is near permanent but weakens and flares up many times a day.

After the 14 day cure I got a lot better, I actually though I was cured for whatever it was (at that time I though campylobacter infection). From march until September 2004 I functioned pretty good with only small problems with my joints and a bit of fatigue + some twitches. I gained weight again. In September after my cousins wedding (I got drunk and stayed up all night) I had the worst hangover and was extremely tired. I never really got better after that. All the symptoms slowly came back again and the cycle of waves of feeling very bad and just bad started again.

HMm. I thought. It's not campylobacter then. I told my new Doc. About my tick bite and he agreed to have me tested for borrelia. I got blood work done and spinal fluids taken from my back (how precise is this test?). It showed nothing. No infections. I was dumbfounded. I was extremely tired had very bad muscle and joint pains (especially my left hip at that time, where I got bitten. I got another Gastroscopy and a Colonoscopy because of my digestive problems. Nothing was detected. No problems they said. This was just a reaction to an old food poisoning they said. In November 2004 after having biked to work like always my heart started skipping and jumping, like somebody kicked me in the chest and my heart would stop a 1/2 second and then begin again with a strong beat. I got really scared and phoned a doctor and was told it was normal (I never had anything remotely like it before). The next months had ups and downs (again it seems my symptoms come in waves) but when Christmas arrived I begged my doctor for another ciprofloxacin cure, since it had worked before. Even though he had no idea what my problem was he agreed. This cure didn't really help me that much. 2 days after Christmas I went to the emergency room because my heart wouldn't stop skipping beats. I spend the night there under observation but only a few skips were detected and then only when I strained myself (jumping up and down). It seems like my heart skips come mostly when I exert myself or when I eat, although sometimes, like today, they show up suddenly like when I'm writing this and suden wave attacks also show up unannounced. January, February and half of march 2005 has been okay. By okay i mean only stomach pains, joint pains and mild fatigue, + the feeling of having to infected areas in my body (left chest and right flank in abdomen)that hurt almost all the time. My symptoms were mostly weak these months, but never left. I'm still on Nexium for my stomach but it really makes almost no difference, since I've been of it for periods with no real change. All this builds up to the last three days where many of my symptoms came back in full force. The joint and muscle pains, the heart problems, the tiredness, the stomach, chest pains, the searing pain under my ribs right side increased (not the heart side), mild dizziness, teeth and face tingling, headaches, stabbing pains in the skin on my skull, also I got a red rash on my left hand. Red spots a few millimeters in diameter in a belt an inch broad and 6 inches long, from my left thumb up the side of my arm.

What makes me most scared is my heart saying weird sounds when I woke up and the chest pains and the skipping pulse.

I've been reading about Lymes more intensively now for a week and it seems to me that these symptoms could very well be Lymes. The Problem is that the Danish Public health care system thinks that negative spinal fluid test and blood test means that you cannot have Lymes. It doesn't look that way when I ready e.g. this forum though.

I've started looking for people in Denmark that can help me get tested in every way possible, i wish easter was already finished.

If you have any advice on what I could do, please reply.

The scared Dane, Christian

Sorry to hear you are having so many scary problems. What you really need is a doctor in Denmark to sort you out.

Follow this link and post in the group for a doctor in your area.

http://groups.yahoo.com/group/LymeRICK/

Sorry to be brief, when your story deserves much more time and attention. But to start getting to work on it: first, what is your financial situation? Can you afford a test from an American company called Igenex, located in Palo Alto, California? If not, still check with them, as they give free tests to some patients.

Next, take all the energy you have put into arguing that you HAVE Lyme or some local co-infections, and apply it to learning every possible treatment. Boring? Yes. But if you walk into a doctor's office and ask for a specific treatment, not only do you increase your chances of getting it, but you won't waste time on the weaker stuff, and will just take the strong antibiotics and get it over with.

If you do search for a Lyme Literate doctor (called an LLMD on this board) make sure you do as much research as you would on buying a house, because most LLMDs cost that much. Once you pay a lot of money for a doctor, you are much less likely to shop around for all the treatments available to you. And often, it's difficult to know where a doctor is really coming from until you have worked together for a while.

As i wrote I live in europe, denmark. Im an IT consultant with a danish company and i have appr. $ 3000 a month + after expenses and the possibility of extra support from my parents and my savings.

At the moment I haven't a clue as to what tests i should have done, how to have them made (do I need to fly to california from europe or can i send my blood samples?).

I've been reading up on the symmptoms and co-infections, but im still very new to this. Does anyone here know what the general consensus is about the precision of spinal tap diagnostics? In Denmark, it seems that the doctors see it as a fool proof test. What I read here seems to say that its no way near.

You might want to check out the support groups listed here:
http://www.lymenet.org/SupportGroups/Europe/

They might be better at advising you on how to get better testing and treatment than we can from the states, where most of us live who post here. The situation is bad everywhere, as your story shows. This is repeated over and over again. There seem to be a few eastern european countries where lyme is taken seriously, but elsewhere it is a struggle.

The thing to do now is to avoid anymore useless visits to doctors who don't know anything about tickborne diseases. As someone pointed out, this can get expensive when you go elsewhere, to the few specialists. But there doesn't seem to be any alternative now.

The other problem you may have is that ticks carry more than one disease frequently, so you might have gotten lyme + something else too.

I see we were posting at the same time, so I will edit this to say that you should avoid spinal testing at this time. It very seldom finds lyme, even when the patient definitely has it. It is also invasive. Mostly good at ruling out other causes of the symptoms, not to diagnose lyme.

My wife had a very severe case of lyme disease.
She was paralyzed from the shoulders down.

Her spinal fluid test as well as every other
lyme test they did for her in the hospital was negative.

Finally, her test from Igenex (www.igenex.com) was stronly indicative of lyme disease....although it was not a positive test by the CDC (US Center for Disease Control) standards.

I remember being where you are now about a year ago. No one will listen to you. So, unfortunately, you have to educate yourself, find the right doctor and be you own advocate and tell them what you want. Be persistant.

Your health is at risk.

People will be along to give you links to very informative documents which cover everything from helping with diagnosis to treatment.

One last piece of advice. If you do have lyme disease, and if you start treatment, be very very patient. It takes an extremely long time to get well from this disease.

Have you ever read "Bright Candles" by Nathan Benchley? It's a book about the Danish resistance during WWIII. Great book.

Things you can do now while waiting for your blood work is to have your thyroid tested (three test, T3, T4 and TSH). That might make your nails brittle and your eyes dry.

When your body is trying to kill the lyme bacteria it often gets confused and attacks itself.

Also can you get a sleep test? Mine showed I was waking up 233 times a night--half from pain. The alpha waves from your test show what is keeping you awake (I woke up twice because I'm fat). And half the time from hystimines that the antibiotics were realeasing when killing the Lyme.

These are just some things you can work on...and all go to prove you have Lyme Disease.

God bless and good luck to you--you sound Lymie to me!

Linda

Thanks for the reply. I will follow your advice and educate myself as much as possible on this area.

Linda LD Unfortunately Im not on any cure for Lyme right now. Its very difficult to get antibiotic cures in Denmark, because the public health system is terrified that to much use of antibiotics will lead to too many resistant bacteria. However I'm gonna contact my doctor ASAP (after easter and hopefully i will have enough info from the net to convince him to start me on a 2x 100 mg doxycycline treatment (14 days?) straight away. why is this thyroid test an indicator of LYME? can you show me some research/anything that says so?

But as someone else said, It REALLY sounds like you have lyme. If you had a red circular rash around the bite, even if it didn't have central clearing, the lyme rash does often look like that. It is more diagnostic than any of the tests. From what you say I'd say the probability you have lyme is
(1 - epsilon),
where epsilon is arbitrarily small-- that is, there is no doubt you have at least lyme.
And, indeed, lyme disease SUCKS! (click for my experience and lots of links).

DaveS

But, with the correct dr., other tests for co-infections will probably need to be done. I'm not sure of the cost. You may want to check the website. There is also another good lab for some of these tests. It is Medical Diagnostics Laboritories, LLC. (www.mdlab.com).

I'm not sure about Denmark, but here in the US, you must have a doctors written order to have these tests done. You can have the blood drawn at such a facility and sent it to the lab along with the doctors order. The results get sent to the dr.

The thyroid test is not an indication of Lyme but the thyroid is often affected by the disease.

Tests are extremely inaccurate for all of the tick born diseases. The US Center for Disease Control has now stated on it's website that it is a clinical diagnosis. That means that you should find a doctor who knows about TBD's and be diagnosed based on your symptoms.

The EuroLyme site should help you a lot.

Having been infected in Europe, you probably don't have the strains that are tested for here in the US. The strains are different there.

Since you asked about Igenex testing, here goes. The cost of Igenex tests vary. You can spend a few hundred US dollars for a test or two or you can spend a few thousand dollars if you want to be tested for everything.

BTW, I'm a displaced Dane myself. My great grandparents came to the US in the mid 1800's.

You sound like you are on the right track. You need to be in contact with people on your side of the ocean. Please let us know how things work out for you.

Take care,

One thing to keep in mind is that most US labs test for US strains of borrelia, and co-infections.

This means that if you have a northern european strain you may not test positive on their tests.

On the other hand, if you have ever travelled to the US for instance, being tested for US strains of borrelia and co-infections would be really good idea.

Good luck with it!