I just came back from my dr's appointment. This time she was in "I don't care mode", stating antibiotics wouldn't help me, nothing would help me, but if it would make me shut up she would give me antibiotics. She said things like "if you want to torture yourself with useless antibiotics, be my guest". She still refuses to talk to dr. Ackermann at the lab in Germany, she told me to call him myself, ask him what I needed and tell her assistent. I would then get the recipy. I considered asking you guys what to tell the assistent but then felt I shouldn't lie en just get what dr. Ackermann says.

I have gotten 30 days of doxycycline, 300 mg. a day. After that I should call dr. Ackermann again and if I still have symptoms (pain) I will do another cycle and so on. What do you guys think of this coarse of treatment?

Now I'm going to plan probiotics & diet and stuff. I can use every kind of advise on this. I have little money and want to try to make most of what I have. I get the antibiotics today but I want to take a few days to plan everything and do some shopping. My dr. says I should just eat yoghurt and not whine about side effects, but I want to do the anti yeast diet and get supplements. Could you help me pick out what kind of supplements I need? And what should I do about the sun, cause it's doxy and summer over here?

Any help or advise is very, very welcome. And thank you all for helping me get this far. I don't think I would have gotten these antibiotics without you.

Love you all,

I would go with abx in summer and also get flagyl thrown into the mix so to get at any cyst cwd forms. If I remember doxy usually around 250mg 3 x a day same with flagyl but also your weight plays a role in dosage.

I know the dose may be a bit low, on the other hand 200 mg. for two weeks is the usual treatment in Holland, and there's the option of multiple cycles... A LLMD would be really difficult to find, I'm trying to find one in Germany but I don't have a lot of money.

In the Netherlands summers usually have some weeks of sun but we also have weeks of clouds and rain. It's not California so I might be lucky. I think I'll just get some clothes that cover a lot but aren't warm, and a baseball cap, sunglasses, maybe a scarf, and some good sun block. I only get out for some exercise so I would be outside in the sun for about 20 minutes (last part of the exercise I do before I go to bed so little sun there) a day. I could stay out of the sun on very sunny days and just do some more work out during the evening. By the way my work out is walking my chihuahua around the block very slowly LOL.

I will have to cancel my festivals, boat trips and live roleplay events for the summer I guess but I think I can manage. I'm more worried about all the supplements and stuff you seem to need.

International Links on Lyme Disease
http://www.geocities.com/HotSprings/Oasis/6455/international-links.html

Europe:
http://www.lymenet.org/SupportGroups/Europe/

Doxy is good stuff but you really need to take care of your gut.

First, always take it with food or it can become shere hell, (no milk products within 2 hours before or after - reduces effectiveness).

Strict anti-yeast diet and if you can afford it buy acidophilus or other living bacteries for the gut. Not to be taken together with Doxy but at least 2 hours after. I take mine before going to bed, so they have time to do their job.

As I'm very sensible to yeast I take 1 nystatin pill after every meal, but Nystatin is expensive.

What helps me a lot - but I doubt you will get this outside Germany - is raw fresh Sauerkraut (not from the can, this one is useless). It contains living lactic acid bacteries and it's refreshing and cheap.

At least for me, the most important supplement is magnesium. If I foget it I get cramps immediately.

What I consider the most important for you to do:

Get appointments at at least 1 or 2 LLMD's (in Germany or UK). It doesn't matter that the waiting list is very long. Believe me, the time flies fast when you treat and you might find yourself still in need for a good treatment.

If you shouldn't need the appointments anymore when they come up - no problem. You can cancel them some days before and you will make other Lymies very happy who are on the waiting list.

But it might be that you find out that the treatment you are getting now doesn't get you well. Maybe there are coinfections that play a role. You might be happy then, to have a fast appointment.

You may feel worse in the beginning - even far worse. But this is a good sign and you have to go through it. Times will become better again.

All the best and good luck.

Keep us posted,

quote:

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Originally posted by dafje:
Thanks a lot tree patrol, I'll check out the links later... As I'm going to the pharmacist now - what's glucosamine?

---

There are natural abx that some people have found to be effective against LD/Co. Considering the inadequate doxy dose, you might want to add these to your regime as you go along (don't start at the same time as the doxy -- ramp up). The ones I have used and that I'm pretty confident have been helpful to me are

Artemisinin 600 mg in 2 divided doses, with grapefruit juice

Samento--liquid, although some folks also report that the pill form worked for them

Freeze-dried garlic (also excellent for helping to control candida overgrowth)

Monolaurin (a natural antiviral)

Steam sauna (cheap, has been very helpful)

There are far better sources than me on herbal abx for LD. You can see http://flash.lymenet.org/ubb/Forum1/HTML/035430.html for one recommendation -- I haven't read the book myself, but I'm getting it. Dietrich Klinghardt also has an interesting take on things -- you can google on his "Beyond Antibiotics" article.

Please keep us posted.

I doubt I'd be able to find any probiotics worth taking in a pharmacy here either and there's one on every corner. (They have some acidophilus on the shelf near the vitamins but that's it. It been sitting there since someone ordered it in the 80's.)

I go to a health food store and buy one that's been refrigerated. I'm sure you'll be able to find a variety there and they'll actually know what you're talking about.

Congrats to you on getting help. Yes, DOXY is very hard on the eyes. Mine were always sensitive before; now they are 200% more sensitive.

If you go to www.marshallprotocol.com and look for the easy finder by Aussie Barb, read there about sun sensitivities & sunglasses.

I got the NOIR, no infra red/UV sunglasses, which are very reasonable here in the USA. They have other members from various countries there. You might find someone from Netherlands to give you ideas there.

Best wishes!

Today I'm going to try to go shopping. On my own as my boyfriend has to work all day and I don't want to wait till the weekend. I hope the trip into town won't be too hard, I haven't gone there in months (by myself that is). But knowing I might get better gives me more power in some way.

I've been making a list of what I need. Today I'm going to compare prices and try to find some bargains. I especially hope I can find a good pair of sunglasses for a reasonable price. Wouldn't know how to compare them though as there's no sun today.

My list:
for the sun: a cap or preferably a biggish hat, not too warm. Good pair of sunglasses, also biggish. Some very good sun block and some good sunblock for everyday use. Something for the lips that offers good protection. Also a thin scarf and some thin longsleeve t-shirts.

for infections of the mouth: ask about good toothpasts. get a new toothbrush (needed a new one anyway). Already have mouth wash and tooth picks and stuff.

for vaginal infections, urinal tract infections: cotton underwear (most of mine is synthetic), consider boxers or something that's a bit more loose around the body than my usual thongs. Get some of that "good for that kinda place" washing stuff. Also see about cranberry tablets, I've seen some really cheap ones and as I'm a bit prone to getting my urinal tract infected (is there a shorter word for that?) they might come in usefull. Make sure they don't have a lot of sugar.

Then to prevent yeast and stuff in my tummy and to do all sorts of healthy stuff to me:
a good multivitamine. Extra vitamine B. See about minerals: at least get magnesium, the one without the calcium in. Get garlic tablets / capsules (and see how I react to them as I can't have fresh garlic). Fiber tablets. Chlorella tablets. Capsules of good oils (what are they called? omega 6 and something much like that?). See how much CoQ10 is (probably too much). Then of course most important the probiotics, but I don't know much about them so I'll just let the shops advise me.

I want to visit a public sauna a couple of times but as it is quite far away and expensive I want to take hot baths at my mom's (only have a shower myself). Maybe one of the health food stores has something like the salt and stuff you use. I used to take hot baths with lots of salt from the dead sea in it, is this a good idea or should I do something else?

Then I'm going to try to find some cheap dark cloth to make curtains out of. Last summer I could hardly sleep with all the light coming in through the light curtains my mom has made for my house. I need all the sleep I can get. I'm also going to look into yoga and stuff like that if I keep enough energy.

One last thing I'm wondering about. I have piercings that I would really like to keep in. But I worry about infections: would it be enough if I brush my tongue piercing very well? I was thinking I might get another piercing and pop the old one out, clean it (desinfect it during the night, wearing the new one) and pop it back in. That way I could keep both piercings very very clean. I also have a vertical clit hood piercing, I think I'll do the same for that one, though I'm more concerned about the tongue piercing. The one down under is easy to keep very clean, but in your mouth it's harder. You get plaque on it and the piercing isn't smooth anymore so I imagine lots of bacteria there. Anyone know if this is a good idea? I can just ask on a piercing web site what's a good way to clean them. I also wear one in my eye brow but I think soap is good enough there.

Well that's my list, except for groceries (meat, chicken, yogurt, eggs, herb tea, lemons, water, olive oil). Oh by the way am I allowed to drink butter milk while fighting yeast? It's sour and there's hardly any sugar in it (for some brands less than yogurt). Are there any good bacteria in butter milk? I used to drink a litre a day so if I could do that again that would be lovely. I could use it to take my carnitin pills, they're sooo gross and I can't take them with citrus so that would leave plain water or cold tea (yegh) if butter milk isn't allowed. Does anyone know?

I think I'll just write down anything the stores say I should take, and put the name and contents here... Maybe you could help me judge the more complex products... As long as it's like: get some type of garlic, get magnesium, I'm fine cause it's a familiar thing, but with the probiotics and all the kinds of bacteria... Hard!

He has also located a store nearby where they sell turkish yogurt that isn't pasturised in case the europese yoghurt theory is true. Let's hope so, 'cause so far none of the stores have a good acidophilus. Not all of them have their lists finished though.

As for the yogurt....watch the sugar content!!! keep it under 5 grams of sugar or you'll be asking for more trouble. I personally can't get away with eating much yogurt for that reason.

Here in the states, they add sugar to EVERYTHING!

If you had more questions, you'll have to isolate them for me. I don't do well trying to glean your post for all the questions. Hope that makes sense!

and i know NOTHING about piercings....except those in the ears!

I have taken doxi for 2 years now.
I did not have much improvment till
I upped dose to 600mg a day--150 pounds

Be very careful about eating dairy-vitimans-
minerals within 2 hours of taking doxi--
makes a HUGE diffrence in effect.

I have gotten Much better--

Citrus can make sun reaction Much worse--
be very careful--

I have wanted to Live in Holland my whole
life-- I ride a bicycle every day to
every where I go--This makes me a ODD
ball here in the US.-- I have to dodge
cars whoes drivers could care less
if the Crush me under there car .

Take a spin around the block for me.
--Jay--

Okay, first up, about the yoghurt. In the netherlands I can get sugarfree yoghurt with about 3,5 - 4 grammes of carbs and I can get it with fat or low-fat or whatever. It's just plain yoghurt but it is pasturised. I can also get non-pasturised if that's better.

--> Will yoghurt be enough as far as probiotics are concerned and which kind is the best (normal or non-pasturised)?

--> is plain buttermilk allowed? Our buttermilk is as plain as our yoghurt, it even has less carbs than the yoghurt. It's pasturised.

--> is it smart to slowly introduce the antibiotics and the diet or should I just start everything now in the full dose?

--> is there any kind of sweetener I can take? I'm used to having my tea with a table spoon of sugar so I'm suffering here with the decaf herb tea without sugar...

--> I have made up a schedule so I can keep antibiotics and yogurt and probiotic apart. But when am I supposed to do the dental cleaning? After meal, wait two hours and then get yoghurt? Or wait 2 hrs. after meal, then brush and eat yoghurt right after?

--> Do I have to start with the sunblock and the big hat on the first day or does it take a while before I get fotosensitive?

--> What do you do when you throw up? Just continue pills and things as you would normally?

I think I'll have some more complicated questions later, I'm making a list of all the supplements.

Doxy is usually dosed by body weight which is 5 mg/Kg . SOme Dr.s prescribe more than that, and some less. Usually, the higher the better, but with some people, exceeding their body weight limit will increase the side effects.

Sometimes if you eat first, then wait an hr. to take the Doxy it'll stay down better if you're having problems. If you have pills (and not capsules) you can divide one, and if it stays down thake the other half a few hrs later.

Anyway, I called the pharmacy as it says in the manual you can also just swallow them hole. They say they told me to dissolve them in water to prevent stomach trouble. If I drink lots of water with it I can also swallow them whole toward the end of the meal. I think that will work better. I'm not used to eating this much fat in the morning and I was already feeling pretty nausious (spelling?) before I took the doxy. I'm far better with pills than with drinks anyway

I really hope someone can tell me something about sweeteners. Kicking my sugar habits all at once is HARD. Especially because my boyfriend eats normally so when I open the fridge there's icetea and chocolate mousse and juice and stuff...

I only took one because I was afraid to take more. It was about an hour after eating a fairly large lunch.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Barb,
Is this formula (5 mg/Kg) for total daily dose or each dose? (I feel like that's a stupid question.)

I've been keeping to the diet very strictly. I've also stopped smoking weed (no cravings yet). I haven't noticed sensitivity to sun so far but we've had pooring rain ever since I started antibiotics. We had had 2 weeks of dry heat before so now I feel that even though the doctors may be against me, at least the rain gods feel for me

Are you on the anti yeast diet too? And supplements and everything?

for sweetening you can us Stevia powder. It is made from a plant. If it's not for sale in NL (it's not officially approved in Germany - therefore not for sale here) you can order it by internet. You need very little of it - it's very sweet.

Of course, you still can't have your boyfriends icetea but you can make your own. We are making our own ice cream with it - it's delicious. Today, it's strawberries with juice of lymes and fresh peppermint in mascarpone.

I wouldn't use artificial sweeteners like aspartame etc.. It's not clear if they are safe.

Is the sweetener you suggest expensive? And do you have a link where I can order? My days would be so much easier with a nice hot cup of tea...

It is said to cause all kind of diseases. I don't know if this is true - my brother, who is a food technologist, says this is all bull&$�* because aspartame is only made of ... There he gave me a long lecture in chemicals that I didn't understand so I had to give up arguing with him.

In any case I have always been suspicious of it so I never took it. And now with the anti-yeast diet I found Stevia. I don't know if yeast feeds on artificial sweeteners.

Stevia was expensive. With postage I paid something like 12 Euro for 100 grams. But I have it since many months and as it seems it will last me another 2-3 years as you really need very little (and I don't use it every day).

I've just googled and found that Stevia is not approved yet in the EU. You can check out this website: http://www.godshaer.co.uk/stevia.htm
I don't know these people but they say they deliver also to Holland. I've ordered mine in Germany.

You're right. With an absolutely strict anti-yeast diet strawberries are also forbidden. I kept the very strict diet during the first year. Then I started to cheat here and there and found out that a fruit a day doesn't harm me personally. This can be different for you. What harms me is if I eat a lot of carbohydrates. But I can have them once or twice a week in reasonable quantities. But I stay absolutely away from gluten.

As to tea I don't know because I cannot support anything with caffeine anyway, so since 30 years I haven't touched it anymore.

You will get a feeling for what you can eat soon. I have the impression that in the beginning of my treatment I had more yeast problems. Now, it's far better - strange.

Gabrielle

I don't like the food I have to eat, but it only bothers me while eating. Not a single thought of "fries would be nice" or "I could do with a joint and then some chocolate ice cream" has popped into my head. I think this is very weird as I'm bored to death and very much used to snacking instead of having normal meals.

It really surprises me how I don't feel a need for something "good" to eat. People tell me it must be hard, but really all I miss is tea. I used to drink about 3-4 cups a day and I miss it, but I don't like the herb tea without sugar. It tasts like someone put something tasty in a cup of water and then took it out again, leaving me with just the water. Hm I guess technically I'm not that far off there

quote:

---

Originally posted by dafje:
No trueblue, go right ahead I like the thought that I'm not the only one with these questions and problems. How are you feeling? I took 200 mg. yesterday and want to take the full 300 today, but for about an hour after taking the doxy I constantly feel the need to stick my head in the toilet. Goes away very suddenly after the hour though.

I've been keeping to the diet very strictly. Are you on the anti yeast diet too? And supplements and everything?

---

So far I feel pretty good but have only just taken the second pill. I'll see if I can take the 200mgs today. I'm thinking it may be a good idea if I do that for a few days and add more slowly. I'm very afraid of not being able to tolerate this.

I'm going to add some supplements today, as soon as I figure out when to take everything.

I don't know if I can do completely anti-yeast. I'm shooting for very low sugar, for now. I've gotten away with that in the past, keeping my fingers crossed. I'm avoiding all fruit and as much added sugar as possible.

Frankly, I have no idea what to eat. (I can't really afford to shop at the whole foods store.) What do you eat for breakfast, for instance? There's got to be something other than eggs.

I'm also wondering about almonds and almond butter. (I am an almond butter addict) If almonds are high in Mg, then I shouldn't eat it with the doxy. I'm hoping someone comes along and says I can.

My cravings went away quickly and I feel so much better on the diet. Each medication I have been on has changed my appetite level and food preferences. It's hard to plan ahead, just adjust as you go along.

While on doxy I needed to eat more fat than usual. Nuts were my survival food. I cut out almost all dairy and never had it within 2 hrs of Doxy. I always had a full meal before doxy and lots of water with & after doxy. Don't lie down for 1/2 hr after taking it.

Sun: I gave up sunblock because it was causing reactions. I wore a big hat & large sunglasses. I got some huge cotton scarfs (India) that I wrap around my neck and over one shoulder. I let a long piece hang down in front and put my hands under it. Now I can't imagine going out without being all wrapped up. People love my new style. Strangers must think I'm either eccentric or a celebrity.

I learned quickly that I could burn just crossing the street so I always wrapped up including in the car. As much as possible I did not go out during the day. I went out after dark. It was so much easier that way. Sun made me feel awful.

I did not get a vaginal yeast infection until my 9th month of antibiotics. Hopefully you won't either and the piercings will be fine. Anyway if they got infected they would give you antibiotics; you're already on them.

The best probiotic for me is primal defense. I order it on line at a big discount. I ate unsweetened yoghurt the first months but have since given it up.

You can plan ahead only to a certain degree, stay flexible and adjust as you go. When I was on doxy I spent a large part of each day on the sofa propped up on pillows resting.

Epsom Salt baths helped get rid of toxins. Start with just 1 cup of salt & work your way up to 2 cups. Drink lots of water. Epsom Salts (magnesium Sulfate) is very inexpensive.

Good luck and congratulations for fighting to get to this point.

Drink lots of water all the time.

One more thing, be careful about making too many changes all at once. It will be hard to know what you are reacting to if you start lots of supplements at the same time as the new drug. My LLMD believes some vitamins "feed" the Lyme. He says no B,C or magnesium. Several of his patients told me they felt worse when they took B vitamins. He does encourage eating lots of healthy foods. I eat tons of vegetables and do not take vitamins. I take probiotics, fish oil & milk thistle 2X day.

hatsnscarfs

I took 200 on the first day just because I didn't have breakfast: couldn't get to the shops untill noon. Today I'm taking the full dose. I think it was the lying down to fast that made me ill yesterday, but to be sure I'm not taking any garlic pills today. I'm allergic to fresh garlic so I'll introduce those later and see if I can take them. All the other stuff seems to go down well.

I've gotten sunburned already: I've been outside for only 5 minutes, but my face is red and painful. Well, that answers one of my questions then. Hatsnscarfs it is also I now wear sunglasses inside the house, I can't take the light that's coming in through my white curtains. Have to make dark ones in a couple of days cause this is VERY annoying.

It took me 2 hours to figure out when to take what. I now have a schedule that alternates yoghurt and non-dairy meals every two hours. I start with yoghurt and some supplements (acidophilus, multivitamine, fibres, omega oils, and my carnitine) and then two hours later I have a solid breakfast, usually eggs, sometimes with some bacon. Scrambled is my favorite kind if I don't feel like having eggs, put some italian herbs on it & eat while distracted. I wish there was anything besides eggs, too *sigh*.

I have three meals a day (because I have 100 mg pills, I have to spread it over three doxymoments) and right after the meal I take antibiotics and some more supplements. This way I have 7 small meals in a day (3 consisting of meat and / or eggs, 4 being yoghurt). Having lots of small meals helps for me, cause I really can't eat a big meal consisting entirely of meat or eggs. This way I get the most food in me, which is important as I have trouble getting enough calories. Even with the 7 meals I only reach like 1100 or so. I wish I could eat nuts like you, but I'm allergic to them... Wouldn't know about almonds Apart from my yoghurts 4 times a day, I don't have anything I can just grab and eat, which is hard.

@hatsnscarfs: thanks so much for all your tips and tricks. I've been trying to find out what epsom salt is for days, and now finally I know what it is. Now, where to buy will be a much easier question. You are right, maybe starting everything at the same time was a bit... naive. But I feel fine, so I guess I'm lucky. Not lying down after the doxy is a great tip and I feel much better than yesterday.

I'm just having some difficulty figuring what to eat. (I'm a picky eater, to start with, which I imagine isn't helping matters.) I also do better on small meals.

I haven't been outside yet, except to move the car across the street. I'm in florida, it's very sunny and 94F/34C. I think I'll wait until cover of darkness to go to the store. Or maybe an afternoon thunderstorm.

Yesterday I went to visit my dad, but spent most of the evening on the couch covered with every blanket in the house, while my dad was feeling fine in just shorts and a tanktop (yes, my dad wears tanktops. he wears bras too. no, not all dutch men do ). When I got up to go home the floor kept tilting this way and that, and I felt ridiculous taking 10 minutes getting to the door. I almost fell over when my dog wanted to stand up against my leg, and she's a chihuahua mix weighing just a few kilo's. *sigh* I never really get used to how stupid you can feel when you're ill. My dog is a sweetheart though, she knows when I'm sick and comes to lay with me. She lays really still and lets me use her as a pillow that keeps my sore muscles warm. My cat on the other hand, is just interested because of the empty yoghurt cans lying around

--

Thanks a lot docdave if it's ok with you I'll first take what I can get through the pharmacy here, and if the dr. stops treatment and Lyme isn't gone yet we can arrange something (shipping and so on). A very nice safety net - less worrying for me

It's not the weed in itself I think is bad for me, it's the smoking. I've tried vaporisers but they don't really work for me, or kick in hours later when you don't expect it (veeery scary). Same thing goes for cooking with weed (spacecake) - and besides, what should I put it in, eggs? At this point I wouldn't even want a joint because of the diet. I want a sweet drink with my joint and I want to be able to take something sugary in case I smoke too much. Weed can be hard to judge when you don't grow your own, and if you don't get sugar after having too much you'll faint and stay knocked out for a while, having weird hallucinations.

I think I will just quit for a month or so, and when I can have some more carbs (fruit and weed, yummm) I'll pick it up again. That way I won't have to smoke a lot, because after a month my body responds as if it's the first time. If I want the same effect now I have to smoke about half a gramme. In a month I will need only about 1/5 of that.

Good Luck,