I had a tickbite about 4 months ago. no rash around it, just some redness. 3 months ago I started feeling very ill, my symptoms are (hold on, big list...)
severy headache, a lot of pain in facial bones stiff jaw dizzyness extreme exhaustion, can't do anything pain in neck, stiffness, cracking when I move pain and stiffness in back, lower back and pelvis lost my appetite pain in stomach intestines are bad: constipation one moment, diarhoe the next pain in lower abdomen muscle pain and weakness right shoulder and arm sometimes loses strength, bad muscle ache in it, even though I haven't done anything feeling shaky, hands shake quite a bit (worse on right side big moodswings, sometimes heavily depressed for no reason a lot of sleeping problems, mostly insomnia swollen and painful glands my eczema became a lot worse vision seems not quite right anymore symptoms get worse every few weeks I just feel generally ill, like I have a heavy flu
I'm very desperate at the moment. I have an appointment with a internist tomorrow but I hear that here in the Netherlands lyme-tests are not very good, a lot of false pos-neg (30-60 %)
is it likely that I have lymes? there have been many other tests done, which all came back oke.
is there a possibility?
many thanks
Judith
Posted by disturbedme (Member # 12346) on :
Yes, there's a possibility, for sure.
It sounds like you need to be seeing a Lyme Literate doctor though.
Posted by merrygirl (Member # 12041) on :
A lot of the symptoms could be Lyme symptoms. You dont need the Rash to have Lyme.
Most blood tests like cbc,chem panels can be normal but you can still be so sick. so the normal lab work is not likely to show anything.
I would ask the doctor that you are seeing for antibiotics. Doxycycline would be a good choice.
The dose suggested is 300-600mg a day. If you get the doc to give you antibiotics, he/she is likely to wat you to take 200mg a day which is not enough.
Also keep in mind with one tick bite you can be infected with muliple diseases. I am ot sure about what is prevalant in your area.
Someone will come along with more info.\ Glad you found us, but sorry you are sick.
by the way I am NOT a doctor, just someone who is sick.
Melissa
Posted by sixgoofykids (Member # 11141) on :
It definitely sounds like a possibility to me. You would get a great benefit to reading the Dr. B Diagnostic hints and treatment guidelines at www.ilads.org. Posted by adamm (Member # 11910) on :
Sure sound like it
Posted by lymednva (Member # 9098) on :
Welcome to Lymenet Judith.
With your symptom list and history of a tick bite I would say there's a strong possibility that you have Lyme.
Many of the most common diagnostic tests used for Lyme are VERY inaccurate.
Since you are in the Netherlands I'm not sure what to tell you about treatment there. I know some in Europe travel here to see LLMD's.
Perhaps there is a good LLMD closer to you. I hope someone who knows more about that will be be along shortly to assist you.
Posted by judith_svstr (Member # 14259) on :
Thank you all so much for the informative and kind replies. At this point all I really want is a diagnosis and some form of treatment beyond painkillers and antacids and although lyme disease isn't the best thing to have... I'm secretly hoping for it. my whole life has collapsed in these last couple of months. stopped uni, no work is possible... I want to feel better so badly I can't even discribe it.
What happens in the netherlands often is that people are tested for Lyme with a ELISA and Western blot test. But when the ELISA is negative, most labs won't even do the western blot. Some doctors solely rely on the labtests while others do it by symptoms and patient history.. I'm hoping for the latter. we'll see, big day tomorrow.
I will keep you posted
thank you again!
Posted by judith_svstr (Member # 14259) on :
I just came back from the doctor that said none of my symptoms point at lymes and because the normal labtests don't show any infection in my system, I can't have lymes. He told me to go back to my GP and see if she knows any way to help me. He refuses to do any more tests, incl. the borrelia-test because he KNOWS that it will come back negative. he will not give me further treatment.
I don't know what to do now...
sigh
Posted by Dave6002 (Member # 9064) on :
Most people here had such experience as yours. Don't stop seeking the diagnosis. it's better to do an Igenex Western Lyme test(www.igenex.com), which is the most accurate and best.
Seeing regular doctors is just wasting time. Seek the help of an LLMD.
Posted by Vermont_Lymie (Member # 9780) on :
Judith,
It is like David above said. Most doctors in the US (and it sounds like the Netherlands) are ignorant of lyme and tick borne diseases.
That is why we are suggesting that you must go see a lyme literate doctor -- wherever they are. I am sorry to say that very few doctors have taken the time and trouble to actually read and learn about lyme and tick-borne diseases. These few are the only ones that properly evaluate patients and treat us for it.
I hope that you are able to find a good doctor in Netherlands or northern Europe who can evaluate you and determine if you should start treatment. There is a lymenet forum in Europe: http://www.lymeneteurope.org/forum/
I had lyme and babesia for many years and became very ill before going to a llmd and starting treatment last summer. Am much better now but still need treatment. I hope you do not have remain untreated for as long as some of us have! Best wishes.
Posted by lymie tony z (Member # 5130) on :
I agree with the internist...you could'nt possibly have lymes.....
lymes does'nt exist as far as I know....
In many cases we the patient forget that they the doctors etc....
are our EMPLOYEES! We or our insurance companies pay them. I don't know what patient
rites you have over there, however you must be more assertive....
and I know that this disease can rob us of our confidence early on because I experienced this personality trait reversal.
So it may be difficult. But you must demand things from these people and establishments.
DEMAND A WESTERN BLOT AND DEMAND IT FROM ONE OF OUR LABS OR ONE THAT SOMEONE IN YOUR COUNTRY KNOWS IS REPUTABLE!
This is not a disease to play around with.
And it is called LYME! OR TBD....perhaps if we all got used to calling it a TBD or TBI we
would'nt keep running into this lyme vs lymes thing.....
zman
Posted by judith_svstr (Member # 14259) on :
lyme... sorry, not lymes. foreign language and all that
I tried to find a LLMD here in the Netherlands. apparently they don't exist here :S What I did now, which is probably not the wisest thing to do but I'm so extremely desperate, is order doxycycline somewhere without prescription and starting it, seeing if it might help... this is a sheer act of desperation I have to admit. I spend today crying over the Dutch health system and how everyone refuses to take me seriously. What I've been told twice already is that lyme disease is now such a 'hip' disease that everyone thinks they have it. how I feel now... it's not hip, it's horrible.
I just want my life back
it's going to take a while for the AB to be here. until then I'm going to try and stay positive, which is very hard but I don't have much of a choice I think.
It could very well be Lyme and one or more coinfections, but you might want to google microwave sickness and electromagnetic hypersensitivities. Also, the bioinitiative report.
My hunch is that parasites are thriving, courtesy of the wireless boom.
Here is a support group for people with microwave sickness, if you think you might have this:
I'm glad to hear you can at least get doxy there .... I am 125 pounds and was taking 200 mg. twice daily. I don't know if that's the proper dose for you or not, but maybe it's a help.
Please keep looking for an LLMD even if you need to travel. I have to fly to another state to see mine. He has me see him three times per year and the regular monthly appts. are over the phone.
He actually has people come from Europe to see him, so I know there is not much available there .... but I would check on the European boards to see if there is one over there for you to see.
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