New to Lyme...need advice

So I found ticks on me about a year and a half ago.... didnt think much of it. a month later started to have weird symptoms...since then, have had weird symptoms on and off and have been tested for a multitude of things but fuond nothing. after finding lyme symptoms online and just now thinking ive found the cause! i have an appt with a LLMD next thurs but in the meantime i have a few questions.

I know no one can tell me exactly how i will feel but i just was wanting some other peoples experiences. ive read the sticky post NEW to lyme but i still have some ?s

first off, is it curable? i feel like i hear of alot of people who are being treated for lots of years. is this permanent?

when you herx, how bad is it? also how long does it last? is it so bad you cant work? yes im worried about work as i support myself...i have to get treated but i just need to know somewhat what im in for i guess =/

also, im going to a llmd next week but im unsure what tests i should ask for, what meds i should get, and which are better/worse (there r so many tests and meds its confusing!!!).

background: 29 yr old female, not overweight 129 lbs, overall healthy before these annoying symptoms started.

also how do you know when/if you are cured? how do you know if your herxing or its a bad reaction to the drugs?

any help would be amazing!!!!!!!!!!!

Ok Sleepy.

Whether or not Lyme can be "cured" (i.e. you have zero Lyme bacteria left) is debatable- most lyme literate doctors say no. However, Lyme CAN be put into remission, where you have a small enough amount of the bacteria that your own immune system can fight it, and you will have no symptoms.

How long that takes depends on how long you have been sick. Likewise, how bad the herx is depends on how long you have been sick and how sick you were to begin with. It is hard to say if you will be able to work- but I was able to continue school, and am now working, and I was sick for 2 years before hand (and got very ill). That being said- it was the most difficult and unpleasant time in my life (not to scare you- just that you need to be prepared for the fact that it MIGHT be very hard). BUT- I was only kinda sorta able to work before treatment (I got really really close to getting fired/ simply not being able to get up to get to work).

If you see an LLMD they will answer a lot of your questions. They will probably recomend the Igenex blood test- that is the best test currently available (except for maybe a brand new one?).

Hi sleepy - welcome to the forum! I'm sorry to hear about what you've been going through, but hopefully soon you find the answers you're looking for!

I won't lie - Lyme treatment isn't a picnic for anyone, but that's what we're here for - to help you get through it!

As far as being cured - whether you've technically gotten rid of every last bit of bacteria or not - it definitely is possible to FEEL cured - to refer to when you "used to be sick." No one really seems to know the answer for certain, but Lyme isn't one of those things where you're just miserably sick forever, or get progressively worse or anything (so long as you get treatment!). Sometimes treatment just takes a while, for a bunch of reasons - because there's no one perfect protocol that works for everyone so there's usually a bit of trial and error. Co-infections can also complicate/prolong treatment - you'll want to make sure your doctor tests for co-infections as well as Lyme disease (bartonella, babesia, etc.). Luckily as time goes on, more research is being done, and more information is available for doctors to treat us even better.

Herxing usually depends on the person - everyone experiences it differently. Generally it's considered a worsening of the symptoms you already have, and sometimes new ones will come out. Detoxing really works wonders to deal with herxing, and can make a real difference in how well you can work and function. A lot of people can still work and do treatment - it isn't easy, but it's doable. You'll just have to take extra good care of yourself when you're not working - get plenty of rest!

There's no test or anything to tell you when you're cured - many doctors treat for 2 months after all symptoms have resolved. With time you'll learn what herxing feels like for you - and it'll be easier to tell what's a side effect and what's herxing. Unfortunately all of this just takes time to adjust to, but like I said, we're here to help! For most people recovery is a gradual thing. For me it usually just strikes me out of the blue - I suddenly realize that I'm feeling better, that this or that symptom has resolved, etc.

The best thing you can do right now is try not to stress out or get too overwhelmed - Lyme can be very confusing, but if that's what you're dealing with you'll learn a lot in time. Whatever's causing your symptoms - treating yourself right is the most important thing - resting enough, plenty of fluids, eating healthy, etc.

Good luck with your appointment - keep us posted!

Hi Sleepy,

I wanted to just let you know my experience with Lyme treatment. I am a 28 year old female and had undiagnosed Lyme for 10 years before I found out I had it (through positive blood tests). I have been in treatment since September with oral antibiotics and just started IV antibiotics 2 weeks ago. My herx's just make my symptoms worse. Some days are better than others.

I am in a situation where I have a husband in school and a 2 year old, so I have no choice but to work. I was also worried about work because I am the one supporting my family. So far I have been able to continue work (but I only work 3 long days and have 4 days off). I am a dental hygienist and move around a lot during the day.

Then on my "off" days I am a full time mom to my two year old because my husband is usually not home for 12-14 hours a day during the week. I feel like those days are harder than the days I go to work. :)

I will be honest and tell you that every day is a struggle. Most of my symptoms I can deal with (joint and muscle pain, headaches, buzzing, ringing in ears, etc.) But what I really struggle with is the major fatigue and exhaustion. Sometimes I don't know if I will make it through the day, but somehow I always pull through.

We had to move in with my parents so that my mom could help me with my daughter at night to put her to bed so I can do my treatments and go to bed early. I try to sleep 9-10 hours a night although I have sleep problems so it usually doesn't feel like enough. If I get less than that I feel physically sick (nauseated all day).

For me that is the worst of it. Others would say different.

The advice I can give you is this: stay positive (I listen to positive affirmations often and really mentally concentrate on positive things) because that helps a lot. I also recommend getting enough rest and making sure to take care of yourself. There is a lot that goes into getting well again and that alone can be exhausting, but it is truly worth it. Try to find a way to detox because that will lessen the herx reaction. This, I am still trying to find what works for me.

Good luck at your appointment and keep us posted!!

Rocky

Traveler,

I tried ginger tea/products when I was pregnant and was very ill and it did not work for me. Maybe I will try some again to see if it will work now that I'm not so bad. Thanks for the recommendation! I get nauseated quite often so it would be nice to find something that will keep it controlled!

Rocky