Please help me with advice!

Hi NikDem,

Welcome to the forum. To obtain information, open and read the first thread in the forum.

14 days is nothing!! Even in the U.S., doctors usually treat for a month.

If you're having neuro symptoms by now, you need to see a doctor who specializes in Lyme. Such doctors are known as Lyme Literate medical doctors, or LLMDs.

Since you are new to Lyme, you should not be self treating indefinitely. An LLMD can give you a protocol that will be suited to your symptoms, and any co infections you may have, like Babesia or Ehrlichiosis.

The only LLMD I personally know of is in Belgium, but I'm sure there are others.

Lyme is a highly controversial and contentious issue. Doctors disagree on how to test for it, it's duration, and the treatment.

At this point, I think you are going to need long-term treatment. If the antibiotics make you sick, that is actually a good sign in a way; it means they are doing their job. You are probably having something called a "herxheimer," which is a reaction you get when the antibiotics kill the organism that causes Lyme, the spirochete.

When the spirochetes die, they excrete toxins, called "neurotoxins," which can make you sick all over. The one thing that will help you the most in the long run is detoxing. Again, the first thread will give you suggestions on how to detox.

The detoxing will help you with the herxheimers.

I would suggest posting something like, "Need an LLMD in Sweden or neighboring countries," and perhaps someone in Europe can help you.

Marie LS, one of our moderators, lives in Belgium.

I would also try the forum Lymenet flash Europe.

And no, you should not be doing any kind of aerobic exercise for now, bc you will have something called, "exercise-induced fatigue," and you might also end up with very sore muscles.

You can walk, as long as you don't get too tired, or you can do some yoga and stretching.

Start taking warm (NOT hot) baths with Epsom salts or some type of mineral salts. Don't stay in the bath more than 10 minutes. Drink a lot of water, and add lemon.

Again, you will probably need longer than just a few weeks to continue your treatment. Most people don't get well from Lyme unless they have just been bitten, and get treated right away. You may need to be treated for a year or longer. Eventually, assuming your treatment works, you will start to feel much better, but you may have bouts that require treatment for the rest of your life.

As far as Doxy or Mino, I would choose whatever works best for you. Flagyl is good for Lyme too, but is quite potent, and will give you a strong herxheimer.

One thing that is absolutely crucial is that you start taking probiotics now!!! so that you don't mess up your digestive system. You need something with multiple strains, and the best kinds of probiotics are those that need to be refrigerated. Yogurt can help, but really isn't enough. You should also start drinking kefir--personally, I think goat-milk kefir is best, because it isn't as much of an allergen as milk. Ok, I see that you are vegan . . . at the very least, take probiotics several times a day.

Your next step is to find an LLMD.

God Bless and Godspeed to you as well,

Margaret

Welcome to the forum NikDem. I was wondering how long ago you got the tick bite? Are there any lyme literate doctors you could see in Sweden? Everybody has a different protocol that works for them so it's hard to say which meds will work. I did take doxy and mino early in treatment. As for exercise don't over do it. Pay attention to what your body tells you and don't push it too hard. As for diet my doctor said a good lyme diet is no sugar, no gluten, no dairy.
Hope you are doing a lot to detox. Drink water with lemon. Take baths with 1-2 cups of epsom salts in it. Read the first post on this forum for good information. Also come on here often and ask questions or share ideas and support. There are many helpful people on here!

pictureofhealth

Thanks! It is hard to realize that I have to go through this treatment and add new routines to my days.

teragram

Thank you again!

Three neurologists did a neurological examination on me and did not find any symptoms that could match a disease. I've been exposed to loads of stress during the last six years including heavy drug abuse, alcohol abuse and constant worrying so that had it's effect as well.

I'm glad that situation is better in the US, because here in Sweden doctors do not even attempt to recognize their incompetence. The health care in Sweden is worthless and doctors are extremly narcissistic.

Of course MRI is not super potent way to recognize neurolyme, but MRI with concentration enchantment is a great way to see if lyme has affected the brain by the typical epicenters in the brain.

It would be better if I were alone with this hell like disease :)

Best regards

Hi NikDem,

You don't seem arrogant to me at all.

I'm sorry you have had so much stress. Sometimes stress will trigger Lyme to attack your body in a more significant way. Many of us have been exposed to toxins. I had chemo. in the year 2000, which is when my Lyme symptoms were seriously exacerbated.

Personally, even though my MRIs did show brain lesions, I don't think MRIs are a good way to show Lyme.

Maybe someone else will differ. Lyme Disease does not only display itself through lesions or white matter in the brain. Spect scans can help, because they show the profusion (or lack thereof) of blood throughout the brain.

I'm glad your neurological exams were normal.

Doctors, in general, are a very annoying species!

I would suggest that, in addition to looking for an LLMD, you do some research on your own. LymeDisease.org is probably the best website that deals with Lyme. The international Lyme organization, or ILADs (Ilads.org) would also be an excellent resource for you.

Best of luck again,

Margaret

I'm going to bed now, but please stay with us on the forum so you can continue to get support. Let us know what happens.

You can PM (email) me anytime if you need more support or suggestions.

You're doing great so far; you've advocated for yourself, and you've treated yourself.

Keep it up.

Margaret

Bumping the thread for more replies

also neurological symptoms can often be the co infection bartonella. Some people have had success treating this with the herb houttuynia. I am just beginning the houtuynia treatment ( it is a tea or capsule or tincture you can get yourself without needing to get a dr) for my bartonella. You might want to research it-- and ask lots of questions here if you decide to use it because I guess it is pretty potent~

A lot of people seem to also have success using herbal treatment for their lyme. There are a few different options, and again I am still working on it so can't say for sure what works. But some options you can research are the protocols from:

-buhner
-cowden-
-zhang
-misty meadows herbals in new Hampshire (USA).

You can ask here about herbal approaches because a lot of people use them. Not that you shouldn't go on antibiotocs- it is just a differnet option. And if you are having trouble getting help, at least you can access the herbal methods yourself while you are finding an llmd.

Most of all if you think you have lyme you do so don't waste time trying to prove it to dr;s who don't believe you! it is a big problem for lots of people how un aware of lyme and co infections so many dr;s are.

Even some of the best llmd's in the usa still don't know everything and we have to do our own research.
good luck and keep posting here, ask all the questions you want- sometimes I ask lots on a given day! We have to be our own advocate. Over time you will start to figure this out and put the pieces of the puzzle together so you can heal.

it is overwhelming. It is a lot to learn and a lot of trial and error to figure out what is right for you.