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?

PS I'm sorry if my english is poor, I tried but I didn't feel like checking the whole thing with a dictionary or something.
 

Are you currently getting any treatment?

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

See these URLs
http://www.lymenet.org/SupportGroups/Europe/EuroLyme.shtml
http://www.lymenet.nl/
 

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).

Lyme he says is like the flu. Either it just goes away or when your body is weak you need a couple of pills and then you're ok. So I wanted to give him some scientifical proof that it isn't that innocent. I probably won't get the support anyway but I don't want to go back empty-handed after being mocked like that.
 

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.

[This message has been edited by lou (edited 31 March 2005).]
 

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.

But first I'll have to find out if it's really the same thing so I'll go to sleep now and read about it tomorrow. Thanks for helping me & good night (or good whatever you have right now).
 

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.

Sweet dreams.
 

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.

And now I'm really going to go to sleep. I'm really happy I found this site. Thanks.
 

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

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

 

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?

I'm going to start reading now thanks for all the links!
 

And going to England for a conference, I don't know. I think it would be very difficult and quite expensive. Going to the U.S. might actually be easier as my dad is planning to go to Boston and would take me along for free. I don't know anyone who'd take me to Britain and I don't travel on my own (can't carry my luggage and it's not safe anyway) outside the country. But thanks a lot for the tip
 

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?

And I also wonder about the type of test I might have had... You said "This in contrary with the Netherlands where they normally only do a WB if the ELISA was positive." I only had the one test, and it came back positive, but they didn't do another test after that. So I guess I've just had the ELISA?

 

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????

OK maybe I'll just stop reading for a bit and have some tea. Yeah. Tea.
 

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.

Linda
 

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 wasn't really planning on telling old boyfriends or anything untill I know for sure but it might be a good reason to keep using condoms even after having a new boyfriend tested for STD's (I always make them get the tests LOL).
 

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.

Pretty much everything that nearly killed me and everything that keeps me from having a normal life right now, has to do with him thinking I'm making things up or somatising. And every time something proves that I'm actually really ill, like the doctor checking the wrong box - and I actually had the disease. Like the surgeons who didn't understand why I was still breathing. There has never been any medical problem I confronted him with that turned out to be psychological, every time it turns out to be fysical, with fysical proof for it. And every new thing is still psychological or fake to him.
 

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.

You see my carnitine pills cost a lot of money, I think about 2000 dollars a month. My insurance doesn't cost a lot because in Holland all students can get insurance for a fixed amount of money (about 90 dollars). Now I have to stop studying at a normal university, and start at the open university, where you get the same classes and stuff only you study at home. There are no insurance rules if you're in the open university. So my insurance company said they were allowed to take me out of the student's insurance and they want to give me the most expensive insurance (as do all the other companies) which would cost me about 350 dollars a month more. I don't have that kind of money, and as college fees are about 270 a month I just got a fake enrollment at my old university. I'd rather give them my money than the insurance people. Also I get to travel for free by train and bus while I'm in university so I even get something back for the 270 and I can use their library and so on. So they haven't been very helpful since I pulled that stunt.
 

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.

Pat, thanks a lot for your offer. My dad is here right now and we're discussing going to the U.S.A. if it doesn't work out here. But first I want to try in Holland because I think it's ridiculous to have to go to a whole other continent to get decent treatment.
 

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

[This message has been edited by Lymetoo (edited 01 April 2005).]
 

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).

So... Does anyone (Martijn?) know a good doctor in the Netherlands? Or maybe in Germany or Belgium or Britain? And if you could go to all of Europe and to the U.S. to get treated, where would you go? That last question will only apply if I really can't find anyone a bit closer to home, but I would still like to know your opinion

 

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.

After writing it down I feel pretty sure Lyme never went away. If my doctor asks me what kind of antibiotics I want and for how long, what should I say (yes, he would actually ask me that)??
 

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...

And when I look at the Dutch CBO part of it, I still don't know where I fit in... Am I stage 3 Lyme-artritis? I don't have artritis... So stage 3 Lyme neuroborreliosis? I don't know... Besides, it says if you've had 30 days of treatment, stop treatment and don't start it again. Diagnose post-Lyme. Yeah, that'll help.
 

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?

And will I get more ill if I start antibiotics? From the dead spirochetes and the side effects? Because if I have to go through a period of time where I'll be more ill than I am now, I'll have to find another place to live. I can just about manage living on my own now, but if it would get worse before it gets better... Is there some internet site where I can look up side effects? Because some things I can handle better than others (if any drug causes muscle weakness I shouldn't take it, I'd need a wheelchair again).
 

So does anyone know where I can find some info on how the dying bugs could effect me?
 

I don't want to tell my doctor I want any kind of drugs for years and maybe even indefinately. He'll laugh. Would it be smart to tell him I want them for 6 months and have an appointment after that to see if I'm doing better? Or would 6 months not be enough to feel a bit better?
 

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.

Pat
 

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 read the side effects to the drug you mentioned but it says that if you take it for a long time you will get a problem with vitamin B. So do you need vitamin pills if you use that one for a couple of months?
 

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?

God, I feel like when I was 8 and had my first period. My mom figured she wouldn't have to explain it to me until I'd be 10 or 11 but it just happened. I remember sitting there listening to her talking about ovaries and embryos and blood and thinking *what kind of a mess have I gotten myself into this time*.
 

I just can't believe it. Not one. 16 million people and always bragging about our standards of health care, look at the stupid Yanks, look at us doing so well.... blah blah blah... maybe I should try and hit on a meds student LOL
 

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.

Take care,
Carol
 

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!

How alternative are these alternatives... Are they just other drugs or are they things like acupuncture?
 

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).

DLL
 

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!)

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

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.

They're not that into supplements here... I think I'll be able to get vitamins and magnesium and garlic in pills. Or maybe Martijn knows where to get stuff like that in the Netherlands.

How bad is it when you keep the sugar? I just can't go without sugar. I can't have vegetables (yeah, cucumber, interesting) and there's a lot of sugar in fruit - but I don't want to lose the fruit for health reasons... Otherwise my diet would just be bread and potatoes and meat and a bit of yoghurt LOL. Well I guess I'll just have to see how I go and change more things if I get yeast problems.
 

Sorry for asking so many questions *blush* and thanks a lot for all the answers I've learned a lot since I first asked if Lyme was the same everywhere. Today I'm going to get my prints and start reading!
 

I would have thought you have access to all the same supplements as the rest of the EU. If you do not have shops with a good selection near you, perhaps you can buy from the UK www.nutricentre.com for instance.

About yeast precautions. I would advise going by an antiyeast diet from the beginning if not before. The fact you say you cannot 'go without sugar' can be an indicator that you already have yeast overgrowth if you crave sugars and carbohydrates.

Antiyeast diet is: Low carbohydrate green vegetables. No starches or anything containing flour. All meats and fish allowed, diary in moderation. See Dr B's guidelines for instance on www.ilads.org .

I have followed this diet, but cheated on a few occasions in the last few months, resulting in very quick yeast problem. Yeast can be hard to get rid of also and cause unpleasant symptoms, so you would have to be disciplined if you want to get well and avoid yeast.

A limited diet is boring. Chronic Lyme is even more boring, therefore I am now religious about diet again because it's more important to get well than to have some potato or even fruit.

Why do you say you can't eat vegetables?

DLL
 

So what do you think I should eat, just cucumber, meat, dry rice and a bit of yoghurt??

I'm sorry but it just doesn't sound healthy to me. I've tried a no sugar diet once (like no sugar-sugar, not no carbohydrate-sugar) and I could do that if I can have artificial sweeteners... But I can't stop eating bread and potatoes. I don't see how, with my allergies and the trouble with my tummy.

I don't even know if I can take garlic supplements, I'm allergic to garlic too (lots of things like onions and a lot of herbs... what I eat is already very, very boring).
 

Does anyone know where I can look up difficult english medical terms? Ordinary dictionaries don't have the difficult ones listed... Maybe I can look up acidophilus too
 

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

Lyme State Info Cheryl's
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( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

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A copy of this is stored in computer Help section.

 

quote:

---

Originally posted by dafje:
I don't understand why I would want a copy of my test, it was positive...

---

I'm sorry, I thought you were considering having some more testing done, because the doctors are not believing that your current symptoms are still due to Lyme?

That's the usual scenario for Lymies, even when doctors initially acknowledge they have Lyme. They are given a short, totally inadequate course of antibiotics, and when their symptoms continue or get worse, are told it's all in their heads, or it's some kind of auto-immune "post Lyme syndrome" etc.. This syndrome has never been proven to exist, in fact there's plenty of proof that the infection persists even in people who have had a lot of antibiotics.

Much of what you describe is very familiar to Lymies. The doctors disbelieve it because they are being fed misinformation by the Steere camp and EUCALB.

Your doctor who refused to give you an HIV test needs horsewhipping. Unprotected sex with ANYONE is an HIV risk, unless you have 100% proof that your boyfriend is the Virgin Mary, has never touched IV drugs, had a blood transfusion, or used a tattoo place that wasn't too particular about sterilisation (and most of them are not) etc etc. There's also other risks like chlamydia etc..

Do not let the disbelieving doctors get you down - stand your ground, keep notes, and photograph or video any symptom that can be photographed or video'd. You never know when this may help you.

The doctor who told you that neurological deficits can never fluctuate is a total idiot. They do in many conditions. You could ask him, why do MS patients have relapses and remissions?

It is true that there are certain aspects of this illness that baffle the doctors, especially because often things do not show up on tests as expected. They are also baffled by the huge range of symptoms, by the way they fluctuate etc .It is a bizarre, multi-system disease, but it can get serious if left untreated, so try and be seen by a doctor who is in ILADS or is well-known for having helped large numbers of patients with Lyme.

Lisa

 

quote:

---

Originally posted by dontlikeliver:

About yeast precautions. I would advise going by an antiyeast diet from the beginning if not before. The fact you say you cannot 'go without sugar' can be an indicator that you already have yeast overgrowth if you crave sugars and carbohydrates.

DLL

---

Sorry about what I said about "free" medical care. I thought your government provided that.

here are some links about yeast
We're talking about systemic yeast. It can get in your intestinal tract and elsewhere. It can be quite a problem. So start working on it now. That's your best bet.
Candida elimination: http://flash.lymenet.org/ubb/Forum1/HTML/021412.html
Lyme symptoms list compared with yeast symptoms http://flash.lymenet.org/ubb/Forum1/HTML/021202.html

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

 

I've checked the list of stuff I'd be able to eat. Minus my allergies I would be eating:

spinach, basmati rice, olive oil, organic apple cider vinegar, eggs, plain yoghurt, small amounts of butter, chicken, fish, turkey, Granny Smith apples, lemons, limes, water, herbal teas.

So what would that be like, eat lemons and scrambled eggs for breakfast and lunch and have rice and meat/fish for dinner, every night? And snack on herbal tea and plain yoghurt? And that sounds healthy to you?

And why can you eat granny smith apples, they're full of sugars... A granny smith apple is ok but buttermilk isn't? WHY? Buttermilk only has 7 gr. of sugar to a big glass and I'm pretty sure an apple has more....

 

quote:

---

Originally posted by dafje:
Well I don't think I have yeast problems now. I have a small amount of the complaints that are on the list - but I think there are very vague things on it. Some vaginal discharge is normal. Menstrual cramps are quite normal too. I don't crave sugar either, it's just that I can't eat a lot of stuff that doesn't have sugar or carbohydrates in it.

I've checked the list of stuff I'd be able to eat. Minus my allergies I would be eating:

spinach, basmati rice, olive oil, organic apple cider vinegar, eggs, plain yoghurt, small amounts of butter, chicken, fish, turkey, Granny Smith apples, lemons, limes, water, herbal teas.

So what would that be like, eat lemons and scrambled eggs for breakfast and lunch and have rice and meat/fish for dinner, every night? And snack on herbal tea and plain yoghurt? And that sounds healthy to you?

And why can you eat granny smith apples, they're full of sugars... A granny smith apple is ok but buttermilk isn't? WHY? Buttermilk only has 7 gr. of sugar to a big glass and I'm pretty sure an apple has more....

---

It is up to you what you chose to do. A low carb diet, I would consider a healthier choice than systemic yeast, which is not healthy.

It's all about choices, and sometimes it is necessary to make sacrifices in one area in order to gain something in another. There is however, no nutritional benefit in sugar anyhow, it is an 'anti-nutrient'.

As far as what you will have for breakfast, etc., there are PLENTY of low-carb cookbooks out there and recipes on the internet. Rice is not low-carb, it is high carb.

So, one has to use one's imagination and perhaps change old habits. It's a lifestyle change, but if you think about it, so is contracting Lyme disease.

Which is the greater evil? The choice of what you do is, of course, entirely up to you.

Eskimos seem to be doing fine - they live on virtually nothing but meat and fat. Interestingly, they apparently also don't suffer heart disease and diabetes like carb-lovers like the rest of us.
 

Do a Google search for the word you want, plus "dictionary," and you'll get links to online medical dictionaries.

I used the "Taber's Cyclopedic Medical Dictionary" in nursing school, but now it's so easy to look online. http://www.tabers.com/

Hope this helps.
Carol
 

You make it sound like I have to choose between Lyme and this weird diet. I thought my choice was between yeast and this weird diet. I'd rather have yeast than have anorexia again. From what I've read on the list of symptoms yeast doesn't kill you. So I can get rid of Lyme without doing the diet. I'll just lose some of the bad sugars and do all the extra things like tea tree oil and supplements. If I still get yeast after that - so be it. If I do this looney diet I'm sure to faint, and with my muscles being the way they are, I won't get up again. Yeast doesn't do that, so I know what is the safest choice for me.

And the Inuit eat raw, clean meat. Raw meat is full of vitamin C. But I don't plan on eating raw meat from the supermarket. It's probably already unhealthy enough after thoroughly cooking it. I prefer yeast over salmonella or worms or god knows what...
 

However, he does take a good acidophilus away from his abx everyday, along with garlic capsules. It's impossible to restrict a 15 year old boy's diet to fish, sweet potatoes, etc. No soda's, candy, that kind of stuff, but he eats solid meals everyday.

Some of these folks have been on abx for years, so yeast is a real concern. Much less to worry about if your on IV abx, as the stomach doesn't come into play as often.
 

Does it make a difference to yeast if it's normal sugar (like white sugar you put in your tea) or sugar from fruit?

The thing is, I can see lots of things may help people to fight this disease. But besides fighting the disease, I also have to make sure I'm ok, as a person. If I lose hope, I don't think I can fight Lyme adequately. After all, I will have to stand up to doctors and other people who still think Lyme is like the flu. And I will have to go on, get groceries, walk the dog, clean the house, call my friends, and so on. Whatever I'm fighting, I'm fighting it day by day and it won't help me if every day feels like punishment because I can't even eat a decent meal.

There have to be some things in my life I'll be able to still enjoy. I can lose a lot of excess sugar, I won't like it but I can and I'll get used to it. But I can't give up having at least two decent meals a day. These meals comfort me, and I need that. I also won't stop smoking weed every now and then. To me, as long as it's only occasionally, the good outweighs the bad. That's a decision only I can make.

I can decide what I'll be able to change, and what I need to keep to be able to go on fighting. That decision is different for everyone. Some of you are able to change more, live healthier than me. But if I'd do what you do, I'd give up fighting the disease all together, or even get sicker because I might get anorexia again. I have stayed away from all diets for years because once I start making rules (like, no sugar) I automatically start thinking, what else can I do to get thinner. The fact that I'm on a diet proves to me I'm fat, and as long as I am fat I can't go of the diet. See the loophole there? I know myself, I know what I can handle and what not. A strict diet is just something I can't handle.

I also feel that it's important to realise what your body is used to. If you don't eat sugar for months and then eat a slice of birthdaycake, ofcourse you'll get a headache, or worse. That doesn't mean that cake is soooo bad for everyone. My body is used to getting, well, crap. My mom never fed me anything that didn't come deep fried. She thought it was too much work to figure out healthy meals I could eat with my allergies, so she just served me chips & meat every day for 15 years. Besides the allergies, I never got used to eating vegetables, or even pasta and stuff like that. I get sick if I do.

I think it would already make a huuuge difference to my body if I skipped the candy and other excess sugar and start snacking on yoghurt and stuff like that. That, and the supplements will have to do. If I still get yeast, so be it. I've survived worse things than yeast.
 

quote:

---

Originally posted by dafje:
Thanks a lot
I think it would already make a huuuge difference to my body if I skipped the candy and other excess sugar and start snacking on yoghurt and stuff like that. That, and the supplements will have to do. If I still get yeast, so be it. I've survived worse things than yeast.

---

Ill let you know this if your on abx's at higher doses then you better listen .

Low carbs low sugar is a must and acidophilis is also a must taken at least 2 hrs before and after abx's.
And if you dont take acidophilis and lower sugar intake like I didnt at first and Iam a man I got a yeast infection in my well lets just say I missed acidophilis in the mornig and in the afternoon I was pissing a lighting bolt you do not want this.
Believe me.

I also because I drank one soda with sugar in it while on my trip to new england states got over night scummy green teeth and a very sore tounge which I had too open capsuls of acidophilis into my mouth and let melt over the next few days in my mouth every 2 hrs, its called thrush.

And sugars feed yeast and since taking abx's at high amounts its the only thing left standing in your digestive tract all the good and bad bacteria perished in the abx onslaught.

But if you dont believe me go right ahead and learn the hard way

You also need to take complex b vitamins and a multi and cq10, magnesium,and I also took glucosamine, these all contribute to repair of mucle and mylene coverings of your nerve fibers,tendons and conective tissues.

[This message has been edited by treepatrol (edited 05 April 2005).]
 

But if you get so sick when you take antibiotics and eat a slice of bread than why isn't everyone on this diet? Someone just said his/her son just skips sugar in soda's and stuff (I personally don't drink soda's with sugar in them anyway) and still eats potatoes and bread and he doesn't have these infections you mention.

It's not like I'm not taking this seriously. I eat lots of candy and I'll stop doing that right away. I'll stop having sugar in my tea even though it's my "coffee". I'll try to cut down as much as I can. And I'll take all the supplements I can get my hands on, if they help. I'll eat plain yoghurt three times a day if it helps. I'll swith to fruitsugars if that would help. Really, it's not that I don't want to make changes.

I'm just saying I can't, well, won't, stop eating bread and potatoes. If I do I'll get sicker than when I get a urinary infection or have green teeth. I have explained this, so I don't see why you'd have to make fun of me. It's just a healthier choice for me personally.

I could try to have an omelette instead of bread for lunch a couple of times a week and try to eat more meat and less potatoes at dinner, but I just won't stop eating them. I can't go without potatoes AND bread AND pasta AND rice AND dairy. I've heard in the U.S. you have things like low-carb bread and even pizza's. We don't have that here, and then there's still my allergies, and the big fat chance of becoming anorexic again...

I just don't want to get myself into more trouble than I'm already in, and you can scare me with the green teeth all you like, but I won't risk getting anorexia again. It kills you, and green teeth don't. It's as simple as that. I'd say everyone with a brain can see there's some truth to that, if you can't, I feel sorry for you.
 

I don't understand why you appear to be so defensive when people are only trying to help you and trying to stop you finding some things out for yourself, the hard way, when the damage has already been done.

DLL
 

quote:

---

Originally posted by dafje:
Well I'll take the acidophilus if someone could just tell me what it is first...

But if you get so sick when you take antibiotics and eat a slice of bread than why isn't everyone on this diet? Someone just said his/her son just skips sugar in soda's and stuff (I personally don't drink soda's with sugar in them anyway) and still eats potatoes and bread and he doesn't have these infections you mention.

It's not like I'm not taking this seriously. I eat lots of candy and I'll stop doing that right away. I'll stop having sugar in my tea even though it's my "coffee". I'll try to cut down as much as I can. And I'll take all the supplements I can get my hands on, if they help. I'll eat plain yoghurt three times a day if it helps. I'll swith to fruitsugars if that would help. Really, it's not that I don't want to make changes.

I'm just saying I can't, well, won't, stop eating bread and potatoes. If I do I'll get sicker than when I get a urinary infection or have green teeth. I have explained this, so I don't see why you'd have to make fun of me. It's just a healthier choice for me personally.

I could try to have an omelette instead of bread for lunch a couple of times a week and try to eat more meat and less potatoes at dinner, but I just won't stop eating them. I can't go without potatoes AND bread AND pasta AND rice AND dairy. I've heard in the U.S. you have things like low-carb bread and even pizza's. We don't have that here, and then there's still my allergies, and the big fat chance of becoming anorexic again...

I just don't want to get myself into more trouble than I'm already in, and you can scare me with the green teeth all you like, but I won't risk getting anorexia again. It kills you, and green teeth don't. It's as simple as that. I'd say everyone with a brain can see there's some truth to that, if you can't, I feel sorry for you.

---

Acidophilus is a beneficial bacteria that synthesize nutrients in the intestinal tract, counteract pathogenic micro-organisms and maintain healthy intestinal environment. Acidophilus may also be used for digestive maintenance and flora restoration after long courses of antibiotics.

I aint trying to scare you just telling you facts its up to you to decide.

This is a clip from my newbies links about yeast problems.
Ill post another time of these links I would read everything and stay calm knowledge is power.

Candidiasis

Quote Lida

Ilads

ZIPZIP Thanks

IntestinalFlora

 

Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead.

Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.

Lyme State Info Cheryl's
LYME DISEASE TREATMENT & DIAGNOSIS
Cheryl's LDT&D

Conflicts in Lyme

How to Search Courtesy of Danq
TC LymeNet Links for New Members
TC 50 Questions

TC Warning To Posters

Lida Mattman

DISEASE INFO - COINFECTIONS

Newbie's Lingo

Links for family members

Lyme Disease Audio Network
Dr. Joseph J. Burrascano's Treatment Guidelines
CDC Website on Lyme Disease
International Lyme and Associated Disease Society

Lyme Disease Symptoms
Rashes
Co-IinfectionsThanx M

Rose's 15 Facts for Newcomers
Making the Most of Your LLMD Visit
Camp A and Camp B, The Lyme Disease Contoversy
2nd Version Camp A Camp B

MP Controversy
MP 2

Why You Can't Trust Medical Journals Anymore
Something to share with friends and family members But You LOOK Good!

Labs
MDL
Igenex Labs
Q-RIBb
Western Blot Info
FDA It is important that clinicians understand the limitations of these tests

Explaining Borreliosis (Lyme) Western Blot Tests
Explanation of Western Blot Bands
Igenex Labs on the Western Blot
Melissa Kaplan's Lyme Website Explains Western Blot
Dr. C Explains Western Blot
( No you don't always see a bite and if there's no bullseye the only way your going to be able to tell is (symptoms) and (((Maybe))) WB or lyme dot blot 3 day urine banged with abx's to free your antigens up for the test.
- = Not Present
+ = Low
++ = Medium
+++ = High
+/- = Equivocal = Indeterminate its there but not as intense as low) )

See this ( . )thats the size of the larva stage tick...
Next nymph size... ( * )
Next is adult ( o ) to ( 0 )
Pretty small????? HUH

Western Blot
Blood Brain Barrier
ABX `s Cross Blood Brain Barrier

Drug Interactions and Other Drug Info
Drug Digest
American Medical Women's Association Tiscali Reference Encyclopedia

Herxing
What Is a Herxheimer Reaction?
What Is Herxing?
The Herxheimer Reaction

Herxheimer Reaction Explained

Candidiasis

Quote Lida

Ilads

ZIPZIP Thanks

IntestinalFlora

Parasites
Put word Diarrhea in Search
Morgellons
Infestations

More Tick Disease

Coinfections 1

Coinfections 2

Bartonella Rash's

RMSF

RMSF Tree

RMSF Spotless=HME

Tularemia
Tularemia Rabbit Fever

Infectious Disease List

Mycoplasmal Infections
Mycoplasmal CDC

Mycoplasma

Autoimmune Debate

Alzheimer's

Elderly Alzheimer's

ALS

Another Story

Lou Gerhrig's ALS

Lida M
Good Article ALS MS And More Etc
Good Article ALS
ALS
Lou G ALS
M S
MS
Danette MacDonald
I'm not giving up
ALSO trigger MS
Lyme a hidden danger
The saga continued
Tom Grier
Links

Check Diet Link Atkins Diet

PORT-A-CATH (catherter)
Abx's Port

Prolotherapy

Transmission Lyme
Transmission Fleas Mosquito's Food Etc
Transmission Etc

Sexually Transmitted ???
Transmitted Through Sex?
Sex Question-Serious-Adult Content
Video On Demand: Blood Supply May Be Source Of Lyme Disease Infections

Good Site Canadian Lyme Disease Association
FDA on Lyme Testing

InsuranceLaws
Medical Records Privacy
Legal Help
Legal Help
Legal Help
Legal Help
Legal Help

MatthewGoss Site

GreatSite
MedicalDictionary

Cheryl's Site

MorphologySimplified

Tonsils crimson crescents

Killing Lymphocytes By Spirochetes

Wealth of Info

Support
USA Support

SupportGroups Canada

Canada SupportGroups

Associations, Foundations, and Support by Country

Marnies......... Ten Points Regarding Mg and Lyme Disease
In a Nutshell P1

In a Nutshell P2

Part1 Long over Due
Part2
Part3
Part4
Part5
Part6
Part7

Updated in a Nutshell
For My Friends

Canlyme MAG

Help with Meds

Help! Free Meds

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[This message has been edited by treepatrol (edited 05 April 2005).]
 

Why am I being defensive? Because I don't think it's smart to prevent yeast in ways that are far more risky than yeast in itself. Maybe you are a bit focussed on Lyme and yeast and so on, but anorexia is a very very dangerous disease and I just don't want to go down that road again. I've explained what I think is worth it and what isn't. If you would just listen to me, and see what risks it would involve to do what you say I should do, you wouldn't ask me to do it.

And I just don't believe all of you are so strict on this diet. I think with all the supplements and the acidothing and everything you've recommended, and cutting out all sugars besides 2 portions of carbohydrates a day, I should be ok. It would mean 1 potatoe and 2 slices of bread a day, and no sugars beside that. I think that already is quite a strict diet. If I get in trouble with yeast I could still decide to stop all sugars for a few days so things can fix themselves.

All I'm saying is: there's probably quite a few people who will be fine with the diet & supplements I suggested. Or who just have some minor problems they can cope with. It's only a few people who will get in so much trouble with yeast with that diet, that they'd rather be anorexic. At least that's what I think. I'm telling you, I know myself, and if I try to do the very strict diet I will be eating nothing but yoghurt and lemons in a couple of weeks. I'll be severely underweight in half a year, and probably too psychotic to go to any class of a doctor. I might be dead before the spirochetes are.

This is not me being like a kid who doesn't want to eat her sprouts. I'm making a very mature decision, based on what I know about myself. I have the strength to admit I'm not stable enough to handle it. Please respect that. Maybe you think yeast is worse than anorexia. I don't. So unless you have some source of information that says I have a big fat chance of dying from a yeast infection...
 

Thrush

Infections due to Candida sp account for about 80% of all major systemic fungal infections. Candida is now the fourth most prevalent organism found in bloodstream infections and is the most common cause of fungal infections in ((immunocompromised))LYME people. The frequency of nosocomial candidiasis has risen at least fivefold in the 1980s, making it one of the most common hospital-acquired infections. Although often a benign, self-limited problem, it may be associated with excess mortality of >= 40% (ie, deaths attributable to candidiasis rather than to underlying diseases) and prolongation of hospitalizations.
http://www.merck.com/mrkshared/mmanual/section13/chapter158/158h.jsp
http://www.merck.com/newsroom/pdf/Cancidas_PI.pdf

It eats tissue everywhere it lands now imagine that running free in you Talk about abscess's

Merck is studying the use of Cancidas against Candida, the cause of 80 percent of all serious fungal infections. Candida exists naturally in our bodies. If our immune systems are functioning fine, Candida does no harm. But when someone's immune system is compromised, the fungus can cause severe problems and even kill.

Thats all the time Iam going to give this discussion.

Find out for yourself.

Yeast problems Dr B http://www.ilads.org/burrascano_1102.htm#overgrowth

The sooner you treat the quicker youll feel better and cutting down on sugar is hard for everyone well mostly.

Good LUCK

Plus you can eat carbs just not in the form of easily broken into sugars.

Vegtables steamed el dantie smother them cheese or butter and some fruits too but meat chicken fish beef you name it, fats too.

Read http://atkins.com/food/seasonalmenu-summer.html

[This message has been edited by treepatrol (edited 05 April 2005).]
 

And I can't have vegetables, didn't you read my other posts?

I gave mutiple reasons why it wouldn't be good for me even if it's good for all of you: allergies (so can eat even less), risk of getting anorexia again... Don't you see how dangerous your advice might be??
 

You can also do your own research, it's all out there, all the tools to do that have been given to you - more than once, as you pointed out to Treepatrol already.

I wish you luck and do report back and let us know how you get on with the treatment and whatever diet route you chose to go on.

DLL

It's okay. Many of us here neglected to do the "right" thing, or made a decision that turned out badly.

So get as much information as you can, make an informed decision, set a course, and if you run into problems, there are people here who've had the same thing happen to them.

I've learned so much by reading posts from people who said, "If I'd known better, I would have tried this other way."

Sometimes we need to make the mistakes ourselves before we understand.
Just don't be afraid to ask for help.

Who knows, maybe your way will work out fine.
Carol

I believe (and this is just my personal belief) that if you really watch what you are eating and include good carbs, fruits, meats and fats into your diet, you can combat this. Also, the supplements are very, very important.

Also, I had a neurologist tell me a couple of months ago (he is originally from Sweden) that "Lyme is a condition that gets treated with a 14 day course of meds and then it goes away". I was floored. i just recently tested positive myself.

Please take the advice here to heart-people are only trying to help. Consult with a nutrition expert regarding your situation before you try to do anything. All the best.

Nancy
 

I personally know of 7 or 8 people who underwent abx treatment for lyme, for over a year, who never got yeast. One in particular did two years, and never had yeast. They took acidophilus, laid off soda, candies, cookies, doughnuts, etc., but otherwise ate a normal diet.

Is it possible to get yeast ? Yes. Is it likely ? Probably not.

You have to understand that many posters on here have been on abx for several years. Your treatment may take far less time.

I believe your worrying needlessly, and focusing on something that may never happen. This I do know. If you have lyme, you need to get treated, and the sooner the better.

Lyme can develop and present devastating problems to any organ in your body. Quit worrying about something that may never happen, and start focusing on how your going to get treatment in a country that barely believes the disease exists at all.

One step at a time. Get diagnosed, start treatment. If yeast doesn't develop, then you have nothing to worry about. If it does, there's hordes of members here that will show you how to deal with it.

If you can find a doc that will do IV abx, that's all the better, as stomach issues don't come into play like it could with oral abx.

You have to understand, the folks that post on here, have seen the worse that lyme has to offer. Many have been inflicted for years, and years, some as high as 40 years ! Their bodies have sustained remarkable damage, and yet their here helping new posters like yourself.

The vast, vast, majority of those inflicted with lyme will never experience the horrendous symptoms, and years of suffering that these wonderful folks have.

They're showing you the worst case scenario, because they've lived through it, but they are a fraction of what all lyme sufferers go through. Most lyme cases are nowhere near this horrendous, but they're showing you what could happen.

When I first read this board, I was horrified to think what was in store for my son. Believe me, many things talked about on this board came true regarding my son's condition. However, his disease had not progressed to the stage that so many here have.

My 15 year old is on the road to recovery, and yes, it is a very difficult and bumpy road. I'm thankful that I heard the worse of what this disease has to offer, so I could take precaution's to avoid it for my son.

These folks will never know how sharing their experiences with lyme, saved a 15 year old boy, way up in northern Wisconsin from a lifetime of hell, but they did.

They can save a 21 year old girl from Holland, the same fate as well.
 

Also I have been calling just about everyone who lives in this city, but I have finally found a G.P. who might take me in as a patient. They only accept people with certain zipcodes, and I was finally lucky, out of the 60 or so we have, only mine was needed. I'm going over there now to sign the papers. I haven't met this doctor yet (they don't do introductions, just take it or leave it) but I think there's only a small chance he'll be as bad as the one I have now, so I'm just going to do it.

I'll also book an appointment for next week, I still have about 200 pages to read but after that I want to ask this new doctor for antibiotics. In one of the dutch articles they recommended two antibiotics together, for 3-6 months in cases like mine. I'm hoping I can talk the new doctor into giving me those... The article said about 70% of the people who had them were (almost) symptom free for at least 3 years after that

(yeah, I've lost some fights... but not many )
 

Just wondering, but why can't you just put their names here? Maybe some other people could use this information too?
 

so sorry you have to go thru this horror too. don't know when the world will wake up about this. here are some ideas for healthier eating. i prefer healthy foods to junk and used to love to cook.

there is something called Stevia that is sweeter than sugar and natural, not chemical. you can get it at a healthfood store, but if you do not have those where you live, i think you can order from healthfood sources online.

blueberries are very good for you. you could make a smoothy from yogurt, blueberries, and if you need to sweeten more, stevia.

i used to make health drinks as a snack with goats milk, unsweetened cocoa, and nutritional supplements sweetened with stevia. i liked them better than a milkshake (frappe).

what about things like spelt bread, rolls, and pasta? again, if not available where you live, there i am pretty sure, websites you can order at least the dried pasta from. black bread and rye bread are healthier that white bread.

there are other grains besides wheat and rice. barley, spelt, wheat berries, kasha (buckwheat groats), oats, quinoa...wild rice which really is a grass, not rice. order online whole grain cornmeal and whole grain pastry flour to make healthy cornbread or muffins. put blue berries in the muffins.

berries of all kinds are good for you. blueberries, strawberries, blackberries, raspberries, goose berries, loganberries... on your cereal at breakfast and snacking. if i remember correctly, lots of good whole grain cerials in the Netherlands. and you can make desserts with them sweetened with stevia to satisfy your sweet tooth. top berries with stevia sweetened whipped cream.

and do you have sushi available? probably not, but perhaps the healthfood websites can supply you the ingredients and for saftey use cooked fish ( shrimp, smoked salmon, crab ). and i once was able to get Puruvian purple rice from a local food specialty store. it is short grain and sticky like sushi rice, but healthier. it was not popular, so they stopped carrying it. but i did a search and found that it could be ordered from websites on the internet. seaweed is especially healthy. i used to eat toasted seaweed as a snack.

miso soup? or miso on salad greens. miso is a fermented soybean paste in Oriental cuisine. toss some dryed seaweed (soooo good for you), in the miso soup along with buckwheat or transparent bean noodles or put dried seaweed in other soups, omlettes.... freeze dried oriental soup mix can probably be ordered online.

what about dryed beans/legumes? are you able to eat lentils? lentil soup made with chicken broth and spinich? Indian style dahl made from lentils. if you can eat spinich, what about other greens? kale, escarole, frisse, roquette, collard greens...? are they available where you live? yummy sauteed in olive oil with garlic. (don't prepare collard grns or mustard greens like this however. doesn't taste good. they need to be cooked with bacon or pork (ham hock) and you could probably find an online source to order them in cans already prepared. it is a Southern African American specialty. a famous soul food restaurant in New York City also sells canned foods and i'm sure ordered online. i can't remember the name, but i can easily find out) really good for you. okra?

or watercress? isn't that like lettuce which i think you said you can eat. sauteed in a little peanut or grapeseed oil with sesame seeds and tamari (Japanese soy) sauce, is delish! you could put watercress in soup too. or sandwiches.

spinich with feta cheese and eggs ( and onion and pine nuts if you can eat those ) baked in filo dough and brushed with butter. filo dough is Mideast. i am able to get frozen spelt filo dough, but probably unavailble to you. spinich pie - Mid East specialty. nice meal along with a salad. can you eat olives?

toasted sesame seeds and spinich are a nice combo for vegatarian sushi. so is Japanese pickled radish (with bell pepper if you can eat them. (online sources for the pickled radish?)

dark green lettuce is very healthy. lots of my meals are salads. something easy is greens ( we have pre-washed baby mixed greens readily available here, but whatever lettuces you have available. open a can of salmon and put it on top of the greens. very nice, easy lunch.

what about sprouts? many different kinds. alfalfa sprouts, radish sprouts, broccoli sprouts, bean sprouts. very healthy and good on salads or sandwiches. you could order the seeds and sprout them yourself. easy to do. mung bean sprouts could be stirfried (Oriental) with chicken or meat (and mushrooms if you can eat them) and are available canned. maybe from online oriental food websites? Oriental straw mushrooms and bamboo shoots are available canned too along with soy sauce and other stirfry sauces.

can you eat cabbage? that is like lettuce. you could make cole slaw, stuffed cabage leaves with meat and cinnamon, Irish style cooked cabbage and corned beef, vegitarian dishes.

what about turtle beens, kidney beans, navy beans, black eyed peas , chick peas (in Italy called cece, i think)? chick peas with spinich, a little garlic, olive oil and lemon juice is really yum and a nice lunch. beans can be used in soups, French cassoulet, Mexican chili, pasta, rice or salads. and throw parsley or whatever herbs you can in soups, stews, omlettes, pasta, rice, grains, cooking meats/fish, to add some of the vitamins and minerals you are not getting from veggies.

beans are dried or canned, so should be available from an online source if you don't have them where you live. you should be able to get lentils easily i would think. and there are a lot of Indian restautants and a large Indian population i thought in the Netherlands. ethnic grocery stores?

can you eat onions, leeks, garlic, spring onions? the alums? you could make a quiche with leeks and goat cheese. quiches are easy if you can get premade , frozen tart shells. or braised leeks or in soups mushrooms? garlic has natural antibiotic properties. eat it whenever possible. a slice of lemon will eliminate "garlic breath". it becomes sweet and mild when boiled in chicken stock. and you could roast a whole head of garlic covered with olive oil in the oven and put the paste on bread or meats or....

when i was in Amsterdam, there was a large mideast population. falafel? stuffed grape leaves? other ethnic food? Indian?

goat cheese is fine to eat on the Lyme diet. crumbled on salad, omlettes, on pasta, just on crackers. the mixed whole grain fiber crackers we eat are imported from Europe. they also have whole grian rye crackers. a small amount of hard cheese is OK too i am pretty sure. parmesian, logatelli romano,....

can you eat tomatoes? i think that they are actually a citrus fruit, not really a vegetable. lots you can do with freash or cooked tomatoes. stuff them with tuna salad or shrimp salad for lunch. cooked with olives, capers and artichoke hearts( Italian puttanesca sauce ) for pasta or fish. can you eat artichokes? they are a thistle plant.

are you allergic to all vegetables? i've never heard of anyone who was allergic to vegetables. but i have no allergies and don't know much about them.

there are different groups of vegtables. cruciferous vegies: broccoli, culiflower, and brussel sprouts.

then there are the nightshades: peppers, potatoes, eggplant. if you can eat potatoes, can you eat peppers and epplant too? this will greatly expand your choices. babaganoush is a very tastey Mid East food made from eggplant. grilled eggplant is easy to make and eggplant is good on pasta. if you cannot get whole grain or low carb pasta, (spelt is especially good), since it is dried, should be available online.

root vegtables: carrots, turnips, parsnips, beets. easy to put in soups, stews. and there is something called Jeruselum artichoke that is not really an artichoke, but the root of a sunflower. but a different kind of sunflower than the ones Van Gough painted. just as tall, similar looking , but lots of smaller flowers and a little "weedy" looking. if you or someone you know who gardens can grow them. they can be prepared a number of ways, even like mashed potatoes. i used to grow them, but too sick for years to be able to garden.

green beans? you are allergic to those? how about green peas (English peas)? they are really a legume (bean) and not a veggie. asparagus - isn't that a kind of perennial sprout? - i'm not sure.

how about squash? squash soup should be available in cans ( or that box thing ) from online sources if not availble where you live or too sick to cook from fresh squash). spaghetti squash is a good substitute for pasta. pumpkin?

French sorrel soup? made from sorrel which is an herb, not a vegetable. and i would think more like lettuce. or the herb basil made into a pesto sauce with olive oil and pine nuts and parmesian cheese and garlic. roquette? Belgian endive? radichio? other endives?

can you eat nuts or seeds? sunflower seeds are a favorite snack. toss them on salads. put cashew nuts in an Oriental stirfry with chicken and bell peppers. lots you can do with them. or bamboo shoots for stirfrys? canned and probably available online.

what about soy products like tofu or soy protien. soy beans? i was intolerant to cows milk formula as a baby, but able to tolerate soy bean based formula. is that available near you?

can you tell i am a healthfood mom? but the terrible thing is my kitchen is in no condition to cook in. we bought this house in bad condition more that 15 yrs ago to totally renovate and add on to. but i got sick many yrs ago and never able to work or get disability. and the cost of our med bills. so unable to redo the kitchen. or fix up the house.

only one tiny sink to do dishes in (the other side leaks.) dishwasher hasn't worked in yrs. the faucet broke recently, so just cold water. i have to boil water to wash anything. tiny fridge that has a broken seal and so food goes bad fast. and it desperately needs to be cleaned. and i am unable to do much. not even regular chores. and my whole familly is sick with this. i passed it on to my children.

so we do eat a lot of junk food. my kids live on chicken fingers from fast food or pizza. and my 14 yr old daughter is not allergic to veggies, but has a grandmother with an eating disorder and friends who hate veggies, so she has learned to hate them.

if we had not gotten so sick, we would have a neat clean home. i would cook deliscious , healthy meals. i was a wonderful cook, so my daughter would have learned to love so many different foods. and our snacks would be tastey and mostly healthy. but we fell into the twilight zone....

hope some of my suggestions are helpful to you.

oh, and to let you know, anorexia nervosa is one of the possible neuro-psychiatric lyme sypmtoms. anorexia (lack of appitite not the same as anorexia nervosa and often accompanied by nausia and vomiting), is a possible lyme symptom and a very common symptom of babesia. what i have.

[This message has been edited by Caryn (edited 07 April 2005).]
 

My dad dated a woman for while who was very much into health food so I've tried a lot of that stuff (I just don't remember exactly what kind of beans) and it didn't work, threw up every time.

I'll try to figure out what things on your list may be a possibility and try them before I start on antibiotics.

Thanks so much for all this advice and I'm so sorry for what happened to you and your family. You deserve a good kitchen and I wish I could give you one
 

again, i do not know much about allergies, but i am thinking that a lot of your problems are actually the lyme. i throw up a lot, but mainly just the supplements and oral meds when i try to take them. also the lack of appitite for so many years, and some nausia and to a much lesser extent, vomiting was caused by my undiagnosed Babesia infection.

irritable bowel is among the common lyme sypmtoms. with good treatment, the irritable bowel syndrome will clear up if lyme is the cause. Babesia especially and the other coinfections may very well be involved. i hope you can get to a lyme literate dr soon or at least a dr willing to learn.
 

I was slowly becoming like you before undiagnosed lyme. I could not keep down raw vegatables, then the same way with cooked/steamed vegetables, then cooked to mush and then just almost impossible to keep down. Now that I think of it, everything bothered my stomach.

After awhile on abx (biaxin and flagyl), I was able to tolerate more vegetables. I still cannot eat brocolli or cauliflower no matter how well cooked they are. One of the side effects from flagyl one had to be careful of was anexoria. I did have a little problem with that, even after being off abx. But eventually I was able to return to eating healthy foods.

I think a lot of lymies have this problem. Let us know how you feel once you start abx. I think you are going to be surprised.
Take care,

Corinne