Just 3months ago i wasnt feeling well, and my dr tested me for Lyme (because of joint pain/swelling) and the first test came back positive and so my dr started me on docxy for a 21day course, I took the meds and got sick off them a few times, but kept taking them. My Western blot came back negative so the Dr had me retest because she felt the first blood test was taken too early so wouldnt show up on the western blot. Which she was right, after i was done with my course of antibiotics i went to retest and the western blot came back positive for Lyme. At this time I was done with the antibiotics and my knee and ankle pain was gone, but i had worse symptoms than i did before i started the treatment.

I have had major headaches ranging from minor to pretty bad depending on the day, i've had bad stomach problems, i've missed my period every month since being dianosed, i've been losing my hair (shedding more than normal), mouth sores that come and go, teeth problems i've not had before that comes and goes, bad acne,vision changes, problems remembering and just having problems getting back to my routine, i've had some weird muscle twitches in my arms, legs, eye lids, and fingers, ect..i could go on.

I went to my dr about all these issues because I figured I would need more antibiotics seeing as i'm feeling worse, and the Dr has told me that they caught the Lyme early and treated me for the appropriate amount of time, and the problems I am having is "Post Lyme Syndrome" she also sent me to see a psychologist which was a insult to me, because i would never make this stuff up seeing as i hate going to the dr's and i hate taking medicine! So i went to see this psychologist and he agreed that i should be treated for lyme seeing as i've not had any previous history of mental illness. I guess my question is:

Is it normal to still fill this way 2 months after taking the antibiotics?

Do I not have Lyme anymore, and its just the side affects of the antibiotics killing the bacteria?

The Dr said they wouldnt treat me again unless i'm still feeling this way after 6months, and even then thats "early" for them to consider that.

Am I going to get better with no more treatment? and am I really suppose to just sit back and let this make me feel this way and assume i'm OK?

Again, I am military wife living in Germany so my resources are limited here, and changing a dr would be changing one military dr to another, and they would more than likely back each other up. Any advice would be great

You're not alone. Obviously, there are over 500 members here who share your pain. That's not a bad thing, either. You do still have LD. There's some controversy over whether or not it can ever be cured, but in your case, you definitely did not receive sufficient care. I'm sorry you are seeing military doctors in a foreign country, as you may not have much other choice. You may have to return home in order to receive adequate care--is that a possibility?

Several good places to get started with learning more are located here:

www.ilads.org

www.ilads.org/basic.html

http://www.canlyme.com/tom.html

www.truthaboutlymedisease.com

http://www.personalconsult.com/articles/moldandbiotoxins/ AdvancedTopicsInLymeDisease.pdf

http://www.lymepa.org/Basics2007v1.2Rev.pdf

Those are just some references to help you get started in researching. You can print out the pages and see if they can help you in getting started with your doctors. IDK if the group leaders here on the site can help you with finding an LLMD (Lyme-Literate Medical Doctor) out of the country or not, but if they can, then that's wonderful. You may want to PM one of them so you can get some info that way. If not, then you may need to return here to the states in order to receive adequate care. You really need an LLMD in order to get adequate care, in most cases. You may try to print out the info you find and see if you can get a doctor to work with you, but it may not help, and you may be unsuccessful. I am in the process of working on doing that myself, but I may have to resort to not being able to use my insurance and simply going to an LLMD and paying out of pocket myself. IDK...

Good luck to you. If you need any more help, or just an ear, someone to talk to, I'm just a PM away! Whatever you do, please do not wait another 6 months to try to get further care, and please do not expect these symptoms to go away on their own! Neither is a good expectation for getting better.

*hugs*

Jen

Post edited by: fluffyluggage, at: 10/20/2008 18:25

It amazes me - because I know the military knows more about this disease.

Sweetie - educate yourself...you are in it for the long haul - but dont get down about it. If you can treat it more aggressively, either with conventional and/or alt treatments, you can live a pretty normal life.

But you have to grab the bull by the horns, and take charge of your treatment. Also, realize that you will be better if you make some additional changes - like to your diet. Gluten Free - lots of fresh fruits and veggies and half your weight in ounces of water everyday.

I have to run - but I usually have tons to say

Feel free to pm me for anything - you found a great group here - so many with so much to offer

Get comfy you will be here for a while

Christine

Going to the states would only be possible if I went home to Colorado to visit family, we still have another year and half here in Germany and seeing as the Dr doesnt think I still have lyme, i'm sure they wouldnt send us home early to help me get properly treated.

Tell her flat out NO - tell her believing in "post lyme syndrom" is in fact ignorant and a cop out. You still have it and are getting sicker by the day. She is responsible for treating you. Then she needs to step up.

Dont accept the other crap. Put it to her this way...

"What if you are wrong? And I continue to get sick and the bacteria gets out of control. YOU have a chance here to help me get it under control. Are you choosing to be neglegent?" as i said in another post - "I am willing to pay for your treatment, but I am NOT willing to pay for your ignorance"

Be nice and calm - but very matter of fact.

IDk - Ya gotta do what ya gotta do - I would say look into alt treatments in the meantime.

Its hard man - I really hope that you can make some headway. I hate to have to push certain things on these silly docs...but what choice do we have. Ya have to question a doc that is willing to stake your life on the false information that they choose to believe. And that is what they are doing - staking our lives and health on things that have been proven wrong time and again. That's why I think posing that possibility to some - that you are not willing to bargain with your health and life - based on the misinformation they are treating you with. That is wrong and unethical.

What we bring to these docs - especially the ones who dish out this silly stuff - is info contradicts what they have been told. I mean - if they learned vital info about a disease that they contracted - would they sit back an allow another doc treat them based on false info - I DONT THINK SO.

Make them think and consider your position.

IDK

I am rambling - i am very sorry -

Good luck in however you handle this - and I hope that you make out in your favor. I really really do...

Best of luck

Christine