posted
What's a probiotic and where would I buy one, pharmacy?
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.
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
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!
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Dafje -
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
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
Allergies, had them even as a baby. I'd throw up if they'd give me babyfood with certain vegetables in it (almost all... I can take spinach sometimes and cucumber and lettuce, but that's about it).
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).
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
posted
So I've printed out everything I thought looked useful... I'm now on page 3, that means I have... about 450 more pages to go. Yikes!
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
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
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 inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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.
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
absolutely!
Sorry about what I said about "free" medical care. I thought your government provided that.
posted
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....
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
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.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Daphne: You said, "Does anyone know where I can look up difficult english medical terms? Ordinary dictionaries don't have the difficult ones listed..."
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
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
posted
If I can't eat rice it's even more impossible!! Eggs, plain yoghurt, chicken, fish, turkey and lemons do NOT make a healthy diet. They just don't. I won't get all the vitamins and fibres I need and there's way too much cholestrol in this stuff.
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...
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
My 15 year old son has been on abx for 4 months and hasn't had any yeast problems.
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.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
Thanks a lot I was already wondering how people with kids on abx did it. I really do want to take precautions, but I also know I just need to eat solid meals. There are a lot of days where I just can't cook a hot meal for myself, and especially if I get more ill because of the abx I will need some solid food I can just pick up and eat.
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.
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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).]
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
posted
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.
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Dafje,
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
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
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.
Posts: 10564 | From PA Where the Creeks are Red | Registered: Jun 2003
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
WELCOME To LYMENET
Here's more goodys! A typical response to newcomers.
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 inSeeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer.
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...
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
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.
posted
So I just shouldn't treat my Lyme's disease, because if I do I'll die either way? Is my case hopeless altogether? Is that the uplifting message you want to get across here? Thanks, you've made my day so much easier to get through.
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
We tell the truth here facts and Iam sorry you feel that way.
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.
posted
Oh that's odd because the other list said no fruits, no cheese, no beef?
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??
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
When people give advice, you can take it, or you can leave it.
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
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
posted
I really do appreciate it, most of it was very good. It's just that, I really want to get rid of Lyme. And if someone says I need to do something to get rid of it that I just can't do without enormous risk, I panic. I suggested just doing everything I can do without risking getting anorexia again, but it sounds like that isn't good enough or something. And the pictures just freak me out. The way it was said made me feel like there isn't a good option, you see? And that scares me more than anything.
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Daphne, Just do the best you can. You have alot more experience with ill health than other 21 year olds do. But some of these people have been dealing with these problems for years, and are trying to pass their knowledge and experience on to you.
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
Posts: 6956 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
I totally agree with you in one area-this diet sounds horrid! I also agree that if you have problems with anorexia, you should definately consider the risks before going on it. Is there any way that you can come in contact with a nutritionist to discuss this matter?
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.
NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Dafje, Somehow, I have the feeling that you've never lost an argument with a boyfriend !
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.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
| IP: Logged |
posted
Thank you so much. I feel a lot better and stronger after this. And you're absolutely right, getting antibiotics is the first thing that needs to be done and I'll worry about the yeast once I get the antibiotics.
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 )
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
posted
Dafne- I've been gone for a few days because of a herx. ILADS emailed me the names of two LLMDs. One in Switzerland and one in Wales. Email me if you want the names. You are overwhelming yourself with information. Go step by step. The first step is to get on doxycycline, it's ok to start at 100 mg twice a day then work up to maybe 200 mg twice a day. Doxy advice-1)always have food in the stomach, 2)take with a full glass of liquid, 3)do not lie down for 30 minutes 4)stay out of the sun or you'll get a bad sunburn. Ask the doctor to run a Lyme Western Blot blood test. Yeast-try your best not to eat sugary food. If you get thrush, there are medicines. My doctor prescribed Mycelex troches (lozengers) that I can take with antibiotics. I had no trouble with thrush until I started taking Ketek, a potent antibiotic. Make an appointment with an LLMD and stay on doxycycline until you see him/her. Remember, step by step and don't get overwhelmed. Pat
Posts: 79 | From NJ | Registered: Mar 2005
| IP: Logged |
posted
Ooooh, I'd love to go to Switserland again I used to go rock climbing there, but I haven't gone there since I've been ill because it's just like Ben & Jerry's in the freezer when you're on a diet: just too tempting.
Just wondering, but why can't you just put their names here? Maybe some other people could use this information too?
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
posted
It's against the rules and since this isn't my house I don't make the rules but do respect them. Pat
Posts: 79 | From NJ | Registered: Mar 2005
| IP: Logged |
posted
Oh ok I didn't know. I'll try email.
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
Hi Daphne,
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).]
posted
Caryn, thank you so much. To be honoust with you, I don't even know 2/3 of the things you suggested. Most of the things I know, I cannot eat. My doctor has said that I have quite a few allergies, but I also have irritable bowel syndrome and seem to react very badly to most vegetables (especially when they're not cooked, like tomatoe I can't have raw, but if it's cooked to a sauce I can usually handle a bit). Some of the things I can't have: garlic (none at all), pepper (just tiny ammounts), anything cole like, radishes are an absolute no-no, and so on and so on (I don't know what everything is called in english). Even with spinach I have to cook it to a complete pulp and not eat it more than once a week. I think part of my problem is that I never got used to eating & digesting this stuff. I've tried to get myself used to it but after puking every day for 3 weeks I sort of gave up trying to get used to it. I thought it only made thinks worse as I felt like puking after even smelling the food I was trying to adjust myself to.
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
Posts: 185 | From the Netherlands | Registered: Mar 2005
| IP: Logged |
Caryn
Frequent Contributor (1K+ posts)
Member # 366
posted
Wow! you poor thing! i would starve if my diet were so limited. i love vegetables and am a vegatarian that does eat seafood. very rarely meat; i don't like most meats.
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
Posts: 461 | From Abbotsford, BC, Canada | Registered: Oct 2003
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
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!
oops! 
)
Printer-friendly view of this topic