LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Is Lyme the same thing world wide? (Page 2)

 - UBBFriend: Email this page to someone!   This topic comprises 2 pages: 1  2   
Author Topic: Is Lyme the same thing world wide?
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749

Icon 1 posted      Profile for dontlikeliver     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
dafje
LymeNet Contributor
Member # 7121

Icon 1 posted      Profile for dafje     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338

Icon 1 posted      Profile for Carol in PA     Send New Private Message       Edit/Delete Post   Reply With Quote 
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: 6947 | From Lancaster, PA | Registered: Feb 2004  |  IP: Logged | Report this post to a Moderator
Nal
Frequent Contributor (1K+ posts)
Member # 6801

Icon 1 posted      Profile for Nal     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.

Nancy


Posts: 1594 | From Colorado | Registered: Jan 2005  |  IP: Logged | Report this post to a Moderator
NP40
Frequent Contributor (1K+ posts)
Member # 6711

Icon 1 posted      Profile for NP40     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
dafje
LymeNet Contributor
Member # 7121

Icon 1 posted      Profile for dafje     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
patdetweiler
Member
Member # 7030

Icon 1 posted      Profile for patdetweiler     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
dafje
LymeNet Contributor
Member # 7121

Icon 1 posted      Profile for dafje     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
patdetweiler
Member
Member # 7030

Icon 1 posted      Profile for patdetweiler     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
patdetweiler
Member
Member # 7030

Icon 1 posted      Profile for patdetweiler     Send New Private Message       Edit/Delete Post   Reply With Quote 
I mean about posting doctor's names
Posts: 79 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
dafje
LymeNet Contributor
Member # 7121

Icon 1 posted      Profile for dafje     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh ok I didn't know. I'll try email.
Posts: 185 | From the Netherlands | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
Caryn
Frequent Contributor (1K+ posts)
Member # 366

Icon 6 posted      Profile for Caryn     Send New Private Message       Edit/Delete Post   Reply With Quote 
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).]


Posts: 1093 | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
dafje
LymeNet Contributor
Member # 7121

Icon 1 posted      Profile for dafje     Send New Private Message       Edit/Delete Post   Reply With Quote 
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 | Report this post to a Moderator
Caryn
Frequent Contributor (1K+ posts)
Member # 366

Icon 6 posted      Profile for Caryn     Send New Private Message       Edit/Delete Post   Reply With Quote 
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.


Posts: 1093 | Registered: Nov 2000  |  IP: Logged | Report this post to a Moderator
Corinne E
LymeNet Contributor
Member # 4670

Icon 1 posted      Profile for Corinne E     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi dafje,

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 | Report this post to a Moderator
  This topic comprises 2 pages: 1  2   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


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, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.