Hi! I'm a newbie to lyme forums

In March of 2006 I was bitten by a tick (it couldn't have been on me for more than 2 or 3 hours - it wasn't embedded even, and now I'm starting to think I've had LD much longer) Summer of 2006 I was experiencing a lot of headaches, fatigue, joint pain, but I made excuses about why I was feeling generally so CRAPPY!

At the end of August I was starting to get "lightheaded" - weird sensation of being high and disconnected and felt like I was watching myself in a movie. Within a week's time, I couldn't talk, I had very bad tremors (I felt as though at any moment I was going to have a seizure), my joints felt like they had acid in them, I had "air hunger", night sweats, memory lapses, mis-speaking words (saying cow instad of red) I thought I was dying.

Went to the ER at the beginning of the week - nothing discovered. Followed up with my Family Dr because I kept getting worse daily (I couldn't even remember a sentence I was saying halfway thru). She ran a tick panel - negative.

Sent me to a neurologist. Still couldn't figure it out - Had lots of MRIs of my brain, found foci on my brain. Had a spinal tap - normal & negative for lyme. Since I remembered being bitten by a tick & I had "classic lyme symptoms" she started me on Doxy and sent me to an Infectious Disease dr.

Went to the ID dr. who Ran another tick panel - still negative for lyme, but positive for Babesiosis. So she started me on Mepron (MMMMMM!) She basically had me on Doxy and Mepron for 10 days and I would improve and get worse when done with meds. So then it was 14 days and I'd get better and then worse when completed medicine. After 3 cycles of this crap they said I was "over treated for lyme" and I might have Lupus or Rheumatoid Arthritis. I then knew she had NO IDEA what the hell she was doing and looked for another doctor.

Went to see another "lyme literate" doctor and he looked at my lab work, told me since I was negative for lyme, there was NO WAY I had lyme and that I needed to go read a book called something like "Back Pain is in Your Head". Basically called me crazy and bearly even looked at me. HE SUCKS!

So I went to another real LL doc based on a friend's recommendation. He sent my blood to IGENEX and I was finally positive for Lyme and Babesia. So started the 1.5 years of oral antibiotics. We did get rid of the Babesia with 6 months of Mepron... wheeeee! Just Kiddin. The best treatment I had was bi-cillin LA deep intermuscular injections 3x a week. I felt more like myself then I had in forever. I was able to travel to Cali and DC for work and went to Italy with my family for 2 weeks. The shots were EXTREMELY painful but so worth it. I had to stop after 3 or 4 months cuz I was getting a slight rash on my arms and we were worried about allergies. Plus I couldn't deal with the pain anymore.

So started the 5th or 6th cocktail of oral antibiotics in late 2007 (Octoberish). Finally in December I couldn't take the emotional rollercoaster and just stopped my treatment all together.... and here I am.

I went to see another Dr. 2 weeks ago who is on the longterm antibiotic use won't help kick. She wants me to excercise and eat healthy and take vitamins. Which can't hurt... but I do that stuff minus the excercise - cuz let's face it.. when you feel like crap everyday, who wants to excercise?

I have lyme brain all the time, just learning to live with it. I think I'm going to go back to my dr that I treated with for over a year since he seems to be th most knowlegable and is lyme literate - I'm considering IV treatment now. I'm getting married in August and want to start a family with my fiance in the next year and I'm terrified that if I am not rid of my lyme I will pass it to my child.

I hate the lyme wars - the two philosophys of treatment that have become almost religious... means I am just stuck in the middle and confused! I just want to feel better!

Now I'm not on any treatment... and my joints hurt, I'm always tired and my cognitive function has gone down the toilet.

Sorry if that was long winded... but it's pretty complete. I've also done the whole holistic route too.... I'm doing that right now with vibrational therapies, but not sticking to it 100%, it's very hard to do.

I'm glad I found this site.... and I look forward to sharing and learning with all of you!

Post edited by: Juelz1981, at: 05/12/2008 22:25

Post edited by: Juelz1981, at: 05/12/2008 22:27

I'm with you...you have all the clinical presentations of Lyme Disease and you need to get with a doctor who will tailor a treatment plan for you. This, I know, can be difficult.

Your time line of illness very closely follows mine, so it's interesting to hear your story.

A herx on Zithro is possible, for sure, but Zithro is usually a complimentary antibiotic for treatment of babesia (along with anti-malarials or anti-protozoals, which I am taking). Most antibiotics can kill off some Lyme and are capable of causing a herx.

Since none of us are doctors on here, we can only relate our personal experiences, and those we have heard from others. Again, our personal experiences are the result of much trial and error with medications and supplementations, so keeping track of all that is available is the key thing, so that you can discuss it with the doctor you choose. Some respond well to medications alone; some to natural therapies alone, still others respond to combinations. I have definitely responded better to medications, but I do believe supplements can be a part of my future, once I have beaten back this infection. Anything to boost your resistance to illness and your immune system for fighting illness is good.

One thing I would like to relate, to you and anyone...all medications and supplements have the ability to cause adverse reactions, whether they are herx reactions or side effects. The key is, what can you tolerate? The reason a lot of people stay sick so long (with Lyme or any infectious agent), is that the treatment makes you feel worse than the disease. The people who can't stick to the treatment stay sick longer. It's a horrible double-edged sword, I know.

But a doctor...a doctor who will listen and work with you...that is the key. Some people have to travel long distances and pay quite a bit of out of pocket money, with little reimbursement. But, if you find the doctor who is right for you, it's worth it.

And remember, do not ever feel like you are alone in this. We have all gone through the same things and can empathize and sympathize with you. If you need to talk more, send me a PM. If not, I'll talk to you out here, on the boards.

Be well.

Tom