Advice on further action

Hello,

first of all it's a great thing such a forum exists, because i'm feeling rather desperate. I hope you can give me some tips if what i'm feeling is Lyme or not. Thank you in advance!

It all started a year ago in the summer. I was bitten by a few ticks, which i do in most summers, and didn't think much of it. Then about 2 weeks later after the last tick bite, i got a fever of around 39c which kept me in bed for 3 days, then it disappeared and i seemed to feel as well as always. I did the first lyme test right after the tick bite and another one after a month which was also negative. Then about one month after that i developed muscle and joint pain, not too severe but it kept me from doing my daily exercises. But i didn't feel bad all the time, it's like i'm feeling great and then out of nowhere i start feeling nauseous, my joints and muscles hurt, I can't think at all (i feel retarded), have no energy, have shortness of breath. It sometimes lasts only for like 10 minutes, sometimes a whole day. I feel so miserable and strangely depressed that i stop doing whatever i'm doing. I also started getting herpes outbreaks on the lips every 1-2 months, I originally thought the symptoms are due to herpes because i never had an outbreak in my life.

So i've been to my family doctor for all kinds of tests which all seemed normal. Since i've been ill all my life with all kinds of diseases i thought i'll just let it be and live my life hoping to get better. But i didn't get any better, with on and off symptoms i was getting paranoid if i'm dying or something. So i started researching and thought i'll do another Lyme test (about half a year after the bite) which also was negative. So without knowing what else to do, i kept on living, drinking supplements and not minding my symptoms.

So another summer came and with it more tick bites. But this time I developed a rash, went to do a test a month after that and what do you know it was positive. Got on a 3 week antibiotic treatment (doxycycline 200mg twice a day) and seemed to be getting better, especially my cognitive abilities were starting to improve, i felt myself again (but then maybe i just happened to get a few days without symptoms). Right after the antibiotics i got my symptoms back in a full force, especially in the joints and muscles. I went on a planned trip for 2 weeks so i couldn’t retest. At that time it was on and off as always.

So as far as i understand i got Lyme twice! It could have been something else at first and maybe i killed the Lyme disease with antibiotics the second time around, but i think it’s the same thing.

The biggest problem with this, is that sometimes you have days when you're completely cured, without any symptoms whatsoever. And i always naively think that it's over, or that i'm getting better and they're just post treatment symptoms.

What would you advise my next step to be? I haven't found any Lyme literate docs as of yet, only regular infectologists. Thank you so much for your help and i wish you all to get better!

Find LLMD!! Three weeks of antibiotics is not enough. It has taken 3 months of antibiotics for me to see any improvements.

Best of luck!

Just realized that i posted on the wrong post, but i will leave the information here. It can help others, i think.
These LLMDs are a joke to the CDC. Every government and CDC information that you find out there about LLMD, will tell you that they are only fooling the patients into expensive treatments and unneeded long term abx treatment. One of the ID doctor that I saw for a second opinion warned me about them and Igenex lab. She stated that there is a lab giving everybody a positive diagnosis for lyme, that she has never seen a single negative one (of course not, because the patients that went to her wanted a second opinion because of the positive Igenex). She also told me that there are a lot of doctors, that are not ID doctors, out there claiming to know how to treat lyme. I just listened and did not argue because I knew I would be wasting my breath (she does not have a clue of how lyme and Co feel inside one's body). If I did not have lyme, I would have believe all this ignorant nonsense.
A lot of new to lyme people are confused with all of these information and controversies. They go to an ID doctor after seeing a LLMD, just like I did, to see if the ID doctor has a better treatment and better knowledge on lyme, plus insurance will pay for it. What do you find? a doctor that keeps telling you that it must be something else because the CDC tests keep coming up negative (knowing that these tests are very unreliable). You insist on treatment because you had a tick removed and they only give a three weeks worth of treatment and tell you that that will be enough to kill the lyme...,if you have it. Then I saw another ID doctor who has treated lyme for 30+ years, took a list of symptoms and as he read them he kept telling me that they were not lyme symptoms. He asked me for how long the tick was embedded and I told him 6-8 hours, he dismissed my case by saying that if the tick wasn't there for at least 36 hours, I couldn't get lyme. I told him that the tick fell off a dog on to me, and I did not know for how long that the tick was attached to that dog then he said "the dog would have gotten lyme, NOT you" I concluded my visit as it was a waste of my time and the insurance money.
My conclusion; I ended with lyme because after removing the tick that was attached for about 6-8 hours, I ran to the computer for information about lyme and I ended up on the CDC website... and believed everything, dismissing the possibility of getting lyme. They state that even if a tick is carrying the lyme bacteria, it takes at least 36 hours for a possible infection. Treating after the bite, "just in case" can cause more harm than the bacteria itself. Lyme is easily cured in all stages...and so on with misleading information. I wish I would have known of this forum as everybody would have given me valuable information when I needed it.

Post Edited (Elmesanoya) : 9/30/2014 5:10:25 PM (GMT-6)

Thank you traveler! That was a ton of great info i'll check the treatment as soon as possible. I also received referals from ILADS. There are a few in Poland, which is only 450km from my city, not bad i'd say. Does anyone have an idea how much these things cost? And how often do you have to come back for visits? Thank you so much once more!

Hello again everyone,

i had like a week with almost no symptoms. Some foggy thinking here and there, a little joint pain, but really nothing to impact life. The return of my cognitive abillities was especially welcome, my feelings and enthusiasm has come back. But as you probably expect the symptoms returned little by little and today i woke up with the same "exhaustion". My head is empty, i can't make any decisions, i feel like i have no feelings whatsoever and my whole body is kinda heavy.

But i don't remember having this state of healthiness for such a long time. It's mostly a day or two and then it comes back. Does it mean that it's getting better? I am on a lot of supplements, vit c, carotenoids, vit b and a detox one. I introduced the last detox supplement about a month ago, about a week after that it's when it started to get better. I hope the supplement is the reason and it'll only get better in time and i simply didn't have a random week of feeling well.

My main gripe with this thing is that it's unexpected, i just can't get used to it. You feel perfect and then in the next minute you feel so exhausted that you don't want to do anything. I can't do normal work for longer periods of time, because i don't know when this thing comes back.

I got an appointment with an LLMD in a week. He's from another country but fortunately it's only 450km. But I feel kinda stupid without trying an infectologist over here and going straight to an LLMD (we don't have an LLMD in Lithuania). Or is this the right choice? Also since i'm starting to feel better maybe the supplements will be enough? I've been ill for 1,5 years now.

Eagerly awaiting your advice. Hope you're have a good day today.