The other symptoms were done away with as being "stress related", which is my doctor's excuse to do nothing about anything, even broken bones. Anyway when I was fourteen I had to get a blood test for something else but the doctor put an X in the wrong place and he found out by accident I had Lyme. Beacause I had gone to the doctor with the bulls eye rash when I first got it, they knew I'd had Lyme for over 2 years. They gave me antibiotics for 2 weeks and told me that would do. I got better for a bit but then got a lot sicker over the years, there have been periods lasting several months where I couldn't get out of bed by myself.

I have developed a lot of symptoms, and all of them are on this site, saying they could be (chronic) Lyme. But here in the Netherlands doctors say Lyme is something innocent, you can get it and it makes you ill but then the doctor gives you pills and you're all better. Now I've started to wonder, after browsing this and other websites, if the Lyme we have here in the Netherlands is the same creepy bug you people are all talking about, because you all sound like it's actually really serious. This scares me a lot and I would really like to know before I start reading more and start recognising what I have, and maybe get dissapointed again when it turns out you have a whole other kind of Lyme.

So could someone please tell me if this is the same Lyme?

Are you currently getting any treatment?

Do you know about the European and Dutch websites/forums on Lyme?

I have been diagnosed through a blood test as having carnitine-deficiency. I take 30 pills a day for it but I still have a lot of symptoms and my doctor says there's nothing more they can do about it besides the pills. Other doctors even say carnitine doesn't even exist. I have suggested the deficiency might be a result of Lyme and also that I might still have Lyme, but they just smile and say it's stress-related or psychological (and then give me no treatment or help for that, either).

Also after not being able to work for years, I've tried to get some financial help but the doctor who makes decisions about it says carnitine is like a homeopathic thing you have to believe in to make it work (and that it actually doesn't exist according to scientists/"real" doctors).

What you have been told is bunk.

It is entirely possible that you have had lyme all this time and very much need treatment. The other thing is that some ticks give you more than one kind of germ. Most doctors don't know that either, or know how to test for them.

I suggest that you go to the websites I mentioned since they will know the situation in Europe better than we do. Most posters here are in the U.S.

But good stuff here too. Try reading the links for newbies. Too long to read at one sitting, just pick and choose and work your way thru as you are able. The differences between lyme here and elsewhere are insignificant from the patient treatment point of view. Getting someone to correctly diagnose you is a big problem everywhere (except maybe a few eastern european countries where they take it seriously).

If you really want to try to convince your doctor, you might want to go to the website of the International Lyme and Associated Diseases Society, and print out some stuff to take to your next appt. http://www.ilads.org

However, don't get your hopes up. I am not sure it is worth trying, but if you want to....

If you are going to spend money, maybe it should go for lyme treatment instead of a supplement. But it is entirely possible that carnitine would be one of the supplements you would take along with drugs for lyme and any coinfections you might have. Lymies typically take a number of supplements. Magnesium is a common one.

About the supplements, I'm not spending any money on those because it's diagnosed as an illness (by one doctor, my G.P. and the one who decides on financial help don't believe in it) and I have insurance. Any tests for virusses or other buglike things and antibiotics and everything wouldn't cost me a penny if I could just get them to test me...

You see in the U.S. it might be difficult because you have to pay for the tests and things yourselves (at least so I've heard and I think that sucks) but over here all doctors are forced by the incurance companies to get as little tests and diagnoses done as they can because it costs the insurance people money. So I don't even have the choice of spending money on it... I wonder if it would be worth it to go somewhere where I can just buy them. If the results are worth anything to the doctors over here I think it might be worth it as I would only need the tests.

Just had a final thought. The EuroLyme people have a conference in June in northern England. Any chance you could get to that? Would be very worthwhile.

Thanks for the compliment

And I know it's serious, but in order for me to make a point with surveys and other scientific stuff I had to be sure Lyme was the same bug here as it is there, if they're like cousins or something the doctor would say so and my research wouldn't be worth anything.

I found some excellent stuff on the dutch website and I think I'll just read for a couple of days and then go to my doctor again. If it says in plain dutch that I should have had at least 60 days of antibiotics it can't be like a flu-thing. I'll chain myself to the chair if I have to. I want him to test me for the other kinds of bugs too and I want him to treat me or explain to me why I don't need it with better reasons than stress and flu-like Lyme. And I'll file a complaint for the other doctor with his homeopathy mantra cause it's just not true.

While there are some doctors who never open their thick heads to the possibility of Lyme, I have found that the best results come from doing lots and lots of research, then going in and saying what you want. That could be one antibiotic drug, or a series of them that you could try over several months.

This way, if a doctor wants to help you but doesn't know how, you have something concrete to ask for.

Also, please read about which antibiotics can be too strong for people, and create harsh side effects. The more functional and normal you seem, the more that some doctors (though certainly not all) will believe that this is real, not all in your head, and will give you longterm antibiotics.

Here are some links for your reading pleasure. You're on the right track and with some ammunition in hand, you will win!

Tincup's Links for new members
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Dr. Joseph J. Burrascano's Guidelines http://www.ilads.org/burrascano_1102.htm

Rose's 15 Facts for Newcomers http://flash.lymenet.org/ubb/Forum1/HTML/011977.html

Camp A and Camp B http://flash.lymenet.org/ubb/Forum1/HTML/021395.html

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

Making the most of your LLMD visit
http://flash.lymenet.org/ubb/Forum1/HTML/020605.html

Success Stories http://flash.lymenet.org/ubb/Forum1/HTML/022173.html

Western Blot explanation: http://flash.lymenet.org/ubb/Forum1/HTML/022767.html

The cause and spread of Lyme http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

More info: http://www.ilads.org/

Lyme Wars http://www.wildernetwork.org/Lyme_Wars.html

Lyme Disease State Info http://www.lymeinfo.net/support.html

http://www.anapsid.org/lyme/matthewgoss/index.html

I just have a lot of pain in my muscles, like I exercised way too much yesterday and now wake up feeling like something big ran over me. It also takes me quite long to recover after I've done too much. When I first had Lyme I was really really tired, and my muscles were sore and I had a fever and everything. But after two years I didn't. I don't really remember how long I was ill with Lyme but I'm sure it went like dormant after some time, before they found out what I had.

The pain and weakness in my muscles I have now, started two years after getting Lyme (I'm not sure if it was before or after getting antibiotics, or maybe even during). It was just my hands and wrists at the time but it developed over time and within a year I had it everywhere.

My doctor didn't really do much besides prescribe prozac (he says it's a normal painkiller, but I threw it out 'cause it makes me feel very weird, like I don't have opinions or feelings or something) and aspirin and the like. After some time I started complaining, and have done so at intervals over the years. He has always tried to make me say I felt tired, or emotionally blocked and stuff like that.

I've seen psychologists for it, I mean if people say that'll fix it, I'll try it. Well I've tried it but they just said I was ok, had a bad childhood but handling it well, and they didn't think there is some big psychological problem I'm not telling them about. But then they always say they can't be sure and that's enough for my doctor...

My doctor has given me several real painkillers over time and also other things he calls painkillers but they're really anti-depressants or pills to calm you down or make you sleepy. I checked the names online and I asked in the pharmacy where I had to pick them up. Some of the really heavy pain killers did something for me but always at great cost, and it just wasn't worth it to me. I'm in university, I don't want anything that makes me think differently. My doctor sees this as proof that I'm faking it. So after a while I always give up going there and trying to reason with him.

When I keep coming back and keep saying I want something done about it, he sometimes gives in. I've seen a neurologist once, because when I have a lot of pain somewhere it feels like I can't move that arm or leg or whatever. I've always said it's not really paralysis, because I still have reflexes and the like. It just hurts so much to move it that I don't untill it's a bit better, then I start stretching and so on. But the neurologist said I was making it up because if your nerves are damaged they're just damaged, it doesn't change after resting for a couple of hours. I never said that it did, but anyway, he asked me to leave so I did.

I've also had some kind of exam, I don't remember it's name but they sent electric shocks into the nerves in my leg. It hurt like hell and the nurses said they wouldn't continue the exam 'cause they thought it made no sense to hurt a kid like that when there's no reason to. So I said if it helps to make me better I'll do it, go on, I just can't help crying. But the nurse told us this was the kind of test they did on people who couldn't use their legs at all, ever, to see if the nerves are still intact. As I walked in instead of being wheeled in, they said there was no use in testing because me walking was enough proof. So they stopped and after that a "real" doctor came in and he put a needle in my lower leg, in the muscle. Then I had to "try" to move my foot and that also hurt a lot.

The doctor ignored the nurses who tried to tell him I walked in so there was no need to do that. The needle moved ofcourse so the doctor said I see no reason why you shouldn't be able to walk. I said I never said I couldn't walk. He just stared at me blankly and left for another patient. That's all the exams and tests I've had (besides blood testing).

No wait, I've also seen a dermatologist for the bull's eye rash. The doctor kept saying it was eczemia so when the first red spot started to grow and more appeared I demanded to see someone about it. I'd had eczemia before (as a kid, allergies) and this didn't look like my eczemia at all. The G.P. had just given me creams with hydrocortisone in it (don't know if you know it by that name, it's something with hormones) and told me to stop scratching.

The dermatologist didn't recognise my textbook example of a bull's eye rash as being Lyme-related, he just gave me more cortisone cream. It didn't help at all, and when I said so the dermatologist said this was proof of me getting the rash on purpose (like automutilating or something) because it should be better. So he sent me straight to a psychiatrist on another floor, who said I was fine and then me and my rash were outside the hospital again.

The blood tests that I had done were just the standard things like Pfeiffer, the first few months my doctor was pretty sure it was Pfeiffer so I had a test for that every week. But I kept saying I wasn't tired and the results came back negative all the time so he stopped doing that.

I don't know what kind of Lyme-test he ordered by accident, there's only one kind on the blood test paper and it just says Borreliose blood test. I demanded to have another one done years later, and he then explained me something about it. He said the test tests for two things in your blood. If you have Lyme (like the first time it was tested) both of them are in your blood. If you don't have Lyme they're not. The second test said I had one of them in my blood, acoording to my doctor this was impossible and there had to be a mistake. He tried to make me go home, saying if I'd really still have Lyme, they would have both been there. I said I wanted another test just to be sure and after some arguing I got one.

When I called to hear the results I got his assistent (I always get the results from her) who said there hadn't been a Lyme test, just some other things, but the note said to have me talk to the doctor. So he talked to me on the phone and said the assistent was wrong and my test was negative. Somehow, I don't really believe I was tested again.

But anyway after that he kept refusing to test me for it, saying the negative test proved the antibiotics had worked. But now I'm reading all these articles and they say it's quite normal for Lyme to not show up in a blood test after several years of having it. Even the dutch site says there is only a small chance two weeks of antibiotics would have gotten rid of the Lyme after having it for 2-3 years.

Now I'm wondering, what should I ask for when I go back? I don't really want another blood test cause it doesn't prove anything. From what I've read the other type of blood test doesn't guarantee correct results either. So should I just sit there and say I want antibiotics for at least half a year? I'm afraid he'll just laugh... If a blood test doesn't prove it, are my symptoms enough to diagnose (chronic) Lyme? And how do I know how long and what kind of antibiotics I need?

But what I worry about is, even with the good tests in Germany or Switserland, would it prove anything? If they'd be negative, would it prove I don't have Lyme? If they're positive, would it be enough proof to dutch doctors?

I'm sorry, this is really scary. I just can't believe there is actually such a nasty bug around and doctors here say it's innocent. Maybe I'm overreacting but all that stuff about what kind of tricks it can pull, change shape, not care about antibiotics, turn into an STD, hide for years, what is this, like a ninja-bug or something????

I don't think my twin really believed I had lyme and had given it to my children until she learned that my first boyfriend who I dated 15 years ago had lyme disease ten years ago.

I gave it to him. He doesn't know that--I haven't seen him to tell him.

Yes, you can give it to your boyfriends.

I have already been diagnosed with Lyme, so proving I once had it won't mean a thing. I had the typical rash and I had the positive blood test. I just don't know if that was an ELISA or a WB. It was checked by accident and just came back saying "positive Borreliosis" or something like that. I never get any paperwork or anything, my doctor just tells me, or the assistent. And I never had a second test they just called me and said come over here right away to get two weeks of antibiotics, based on what that one test said.

I've been trying to get my medical files for years but my doctor won't give them. Yeah, I know I have the right to see them but the only thing I could do is sue him and he's still the one sho's supposed to help me when I'm ill (and I can't get a new G.P.). To be honoust, I'm kind of waiting for this one to retire, he's in his sixties, so....

I went to him because I wanted an HIV/STD test. I had had unprotected intercourse with a couple of people, none of them really a big risk but I just wanted to check. My doctor refuses this. I told him after 4 people, and with one third of all men cheating, I felt I wanted it tested just to be sure. He just bluntly refused, saying I was perfectly safe and it would be a Pfeiffer test after every kiss I'd be wanting next. I told him HIV is deadly. He said so is traffic. There really is no reasoning with this man.

The acute appendicitis that nearly killed me (shouldn't have had surgery 3 hours later or I'd have been dead)?
Anxiety.
The pneumonia I had for three months (in the end diagnosed with X-rays)?
Stress.
The unbearable stomach pain I had after the apendicitis, caused by scar tissue strangling my intestins (they had forgotten to stitch me up after the apendicitis)?
Puberty.

This is because the doctors get extra money if they "serve" a lot of patients. So the doctors tried to persuade really ill people who would come very often to go to other doctors, saying they would get better help there or even by just not helping them. So the insurances made a rule that once a person goed to the doctor more often than so and so often, they can't me transferred to another doctor.

I don't really see why my parents would be able to do things differently, I'm 21, I don't live with them and we're not really that close. I think I just have to take it up with the people at the insurance company, but I'm kind of in a fight with them.

I have already missed many years of school but I managed to graduate and now I'm studying psychology on teh highest level we have in Holland, but at home, so I can study when I feel good and stay in bed when I don't.

quote:

---

Originally posted by kaos:
In addition to following up the Lyme, you need a new G.P.

---

Boy, my thought too! Bigtime!!

and guess what gang? This is what could happen if we were to have free health care in the US. Free doesn't mean good. YIKES!

------------------
oops!
Lymetutu

My dad actually cried when he read about people who have difficulty having babies, he and my mom had a lot of trouble with that too and I'm the only one who ever made it, though they tried for years. Their divorce had a lot to do with the stress that caused.

He says I shouldn't have to go through all that, especially after everything I've been through already, so if there isn't a doctor in the Netherlands who will give me the tests and the antibiotics I need we'll go to some other country where doctors don't have their heads up their own asses (his words).

If we can't get him to give me antibiotics we'll think of a different plan like find another doctor in the netherlands or somewhere else. For now I'm just focussing on convincing my G.P. - it probably won't work but we have to try. If it doesn't work I'll try to find a good doctor via the dutch board and this one.

The only thing I really can't work out is what antibiotics I need. I've read some texts about it but I can't find myself in the different categories. Maybe someone could help me with this? Here's my list of symptoms...

I've now had Lyme for 7-8 years, I had multiple big bull's eye rash spots (itchy and warm) when I first had it and had all the classical symptoms back then (fever, muscle pain, just felt like crap all together). Also I had swollen joints (both knees and some other) and my bones hurt a lot, and my glands were so big you could see them from the other side of the room.

I've had very serious issues with my muscles for 6-7 years, mostly just pain and loss of strength. Occasionally I still get swollen joints, usually after doing too much and being somewhere cold. My bones still hurt sometimes, usually when it's really cold. I also have problems with my heart, get an irregular pulse and sometimes it just stops (that's usually when I've done waaay to much) and then I faint. I can't have anything with caffeine cause my hearts starts to race even after just one cola and will get very irregular and sometimes stop. I am carnitine deficient (had a blood test done) and have to take 33 pills a day, 333 mg of carnitine each (so 11 gr. a day).

I get dizzy a lot, it feels like the floor is tilting or something, especially when I stand up after sitting for a while. My sense of balance is really bad (used to be very good) and I fall down easily, when I'm feeling dizzy or when someone bumps in to me. I get low fevers for a couple of hours, sometimes longer. I also sweat a lot and feel a bit like I'm having the flu when this happens. I also get it the other way around, feeling really cold for some hours, sometimes going from hot to cold and so on.

I'm stiff almost every morning (when it's really hot it's better). My immune system is not doing very well, I get ill a lot and it lasts for ever (like pneumonia took me 3-4 months and left me with asthma). Also I've become alcohol intolerant, half a beer wil get me extremely drunk, a whole one will make me pass out and feel extremely ill.

I don't have trouble sleeping, hardly ever get headaches (like, twice a year?), can stand noise and bright light, and I don't think I have any of the psychological problems that are on the Lyme-list. I'm not sure about memory and concentration, I've had some trouble there but I've always blamed it on other things.

I also have sore throats a lot but I blame this on my asthma (I've had asthma as a parting gift from the pneumonia, never had it before that, G.P. has diagnosed it and I have something for it for if it gets really bad). I have a lot of trouble with my stomach but my doctor says that's because I have irritable bowel syndrome. I've never had that before I had Lyme. I don't know if I can mark that on the Lyme symptoms list, but anyway, this is about it.

Yeah I've seen the schedule, but I don't know in what category I'm supposed to see myself. I guess according to the ILADS thing I fit in to the "later than stage I" part but then there still are 9 options for treatment, and it says "over 3 months" but that could mean 4 months or 4 years...

What if they're in cyste shape now, it says I would then need hydroxychloroquine... Do you just start trying one thing and keep changing it untill it works? How do you know how long you should try it?

I have sent an email request to ILADS for European doctors, I'll let you know when I get a reply.

I pretty sure there's a well respected LLMD in Boston, Dr D-I would imagine you need to schedule well in advance.

So in case he has a sudden case of enlightment, I also want to be able to suggest a reasonable treatment. And maybe he'll just agree, just to make me stop coming there for a couple of months. Heaven knows he's never worried about harming me by ginving me too many pills (like a grown-ups amount of prozac for a year when I was 14, for pain regulation).

Even when he does give me the antibiotics I still want to find a good doctor, somewhere. I want a professional to tell me what antibiotics to take and for how long and I want tests for other types of diseases the tick might have given me. But that could take a while so in the mean time I want to try to just get these antibiotics, even from a complete moron if I have to. They probably won't do me more harm than good anyway.

Pat, I won't put my daily email anywhere public, but you can send it to my junk mail ([email protected]) and post here what day you send it. I'll find it in that day's garbage.

I'd really have a lot of trouble getting rid of sugars in my diet (I read that's what you do to prevent yeast). I have a lot of allergies (especially to a lot of vegetables) and wouldn't know how to do it. I do like yoghurt (plain) so I could just make a habit out of eating that a lot. Any other easy ways to deal with it? My mom always said the way to not get yeast infections "down there" was to eat and drink a lot of really sour things like citrus fruit (juice). Is that correct?

If you have trouble getting long term antibiotics, you can investigate some of the alternative treatments for Lyme.

Although most of the people here and the ILADS doctors believe that antibiotics are the way to cure Lyme, there are many who also use alternative treatments.
Some use them in addition to the antibiotics, some use them when they can no longer tolerate antibiotics, and some use them instead of antibiotics.

Denmark would be fine by me, I don't speak the language but as long as the doctor speaks english me and my dad will manage I'll keep it in mind!

I am also a Dutch chronic Lyme patient. I am being treated by Dr W from Bolton UK. I fly over there every three months. I have been treated for about 9 months and making some improvement finally. Would definitely recommend to go see him, it is useless trying to get treatment in the netherlands. Dr W can send your blood to the US for testing, does its own microscopy, can give you the antibiotics through a UK pharmacy, but you have to pay everything out of your own pocket. Consult is about GBP 100 (euro 150) for half an hour, bowen test (lyme, erlichiosis, babesiosis) about euro 250 incl fedex, take a flight with easyjet to Liverpool which does not necessarily cost more than euro 100, meds vary from euro 100 to a few hundred a month if you do not take the very expensive supplements as well (all oral, intravenous would cost a lot more, but you will never get the IV anyway since you live in Holland).

Email me if you want to know more...

Ronald

Dafje

Just sent you an email with name and address

Martijn,

I have not visited the dutch site in a long time. I sometimes look on eurolyme, and lymenet.com. Dr AW is the only llmd in the UK (and as you know one of the very few in europe), and I think half of all people on eurolyme visit him... Feel free to share this info on the dutch website as well...

Dafje - citrus juice for yeast.....I don't think that is advisable, I would have thought it PROMOTOES yeast as any juice would. (apart from vegetable juice).

The advice given by patdetweiler to request a copy of the report of your blood test is good, but bear in mind that a lab following the EUCALB criteria is very likely to send you a "report" that just says whether your result was positive or negative. This is not a true report, it is an interpretation. You see, your blood may contain antibodies that react to certain combinations of Lyme proteins which the good doctors would consider a postive result - the same result, when evaluated by a EUCALB lab, may be interpreted as negative.

There are many reasons for this, but a simple way of explaining it is that EUCALB policies are based on the Steere camp of Lyme scientists and doctors, who are totally CORRUPT.

So what you need to ask for is a report showing the actual "bands", or proteins that your blood reacted to, which have are called by letters or numbes such as "OspA", "34" or "41kd" etc.

Good luck, and feel free to email me at [email protected] if you need more help.

Lisa

quote:

---

Originally posted by patdetweiler:
Tell the doctor you want a Lyme Western Blot blood test and a copy of the report. If any of these Lyme specific bands are there it is diagnostic for Lyme:18,23,31,34,37,39,83,93.

---

- will I need extra vitamin B if I start on the antibiotica NMartijn advised me to ask for?

- will I need to take yeast precautions or is that just when you already have yeast problems?

- if I need to take them do you have a link or something where I can read up on what to do to prevent them (sound icky!)

quote:

---

Originally posted by dafje:
So does anyone know anything about:

- will I need extra vitamin B if I start on the antibiotica NMartijn advised me to ask for?

Take a good multivitamin, magnesium, milk thistle, along with a good probiotic [the kind that needs refrigeration].

- will I need to take yeast precautions or is that just when you already have yeast problems?

Take yeast precautions, a good acidophilus, garlic, yougurt. No sugar or as little as possible.

- if I need to take them do you have a link or something where I can read up on what to do to prevent them (sound icky!)

Do a search here on "supplements", or "yeast", there's a load of info.

- any idea how long I'll need antibiotics with my symptoms and having Lyme for 7 years?

---

Everybody is different, and responses to meds vary. But, I would suspect an abx regimen of 1-2 years.