Tested Positive for Babesia

I'm new here. Was recently at my wits end. I'm 24 years old. I've been fighting what I thought was Chronic Fatigue for over 2 years now. It's been in cycles. It's never been constant fatigue but I've been out for a month in bed before with it. It seems to have gotten better this last year since I've been doing lots of supplements. A few weeks ago I got a viral stomach bug that wouldn't go away. I was out of work for 3 weeks. It was horrible. After that I got back to work and worked a good bit and not long after I lapsed into a complete fatigue. No sickness or other symptoms. Extreme muscle weakness, bedridden, climbing stairs once a day would put me out for the rest of the day. I flew home to my parents so they could take care of me. After this I was at my wits end. I was starting to realize I was going to have to throw all of my dreams away and move back to where I'm from in North Carolina and be taken care of. I was ready to drive off a cliff.

So recently I tried a new Alternative doctor who's also an Endocrinologist. They're here in LA and Dr. L was determined to find out what was wrong with me. 2 and a half years ago I developed a very odd allergy to gluten out of nowhere. I would get hives if I ate it. I had everything done. Allergy tests, blood panels, and even an endoscopy. It was miserable. It was so confusing. By the end of that year I had my first collapse of debilitating fatigue and no doctor knew what it was. It was so scary. All I could do was lay there. Through the next two years this would happen to me 6 times. 3 of the times were accompanied with what an ER doctor called "Mild Viral Menningitis"
I never had a spinal tap I was too scared to. I thought for sure I was going to die. Nothing relieved my pain. IT was so hard and depressing. I haven't had that in almost a year.

I had a panel sent off that takes 10 weeks to confirm the type of Chronic Lyme I have. They actually do a culture. The doctor said that he had never seen Bartonella not accompanied with Lyme so he put me on 500Mg of Azithromycin once a day, Mepron Suspension 750mg/5ml (30ML twice a day for 14 days), Amantadine 100mg twice a day, and an assortment of herbs/supplements.

I'm now scared of having a Herx reaction. I'm so scared that it will come back when I had Viral Menningitis. I'm just wondering if anyone has had herx reactions responding to this sort of treatment and how bad are they really? I can deal with the flu, fever, headaches, sweating, etc but getting Menningitis again is something I'm not sure I can endure on my own. How dangerous are the herx reactions?

All throughout this though my lymph nodes have never been swollen. Not even once. Interesting fact. I feel semi ok right now. The drugs make me feel weird and I don't sleep too well. I'm also on 50mg of Zoloft. My psychiatrist wants to step it up while i go through treatment and she also prescribed .5 Xanax for the anxiety and muscle tension. I'm sorry this is a long post. I'm just looking for some reassurance on going through the treatment for this awful disease.

Post Edited (hamburg58) : 5/25/2012 7:32:50 PM (GMT-6)

Hamburg,

Welcome. Does your lyme doctor know your psychiatrist is adding to the mix with more meds.

Bartonella is anxiety that is for sure but try not to be afraid of getting well.
I hope you are not alone?? Are you living with your parents ?

I had to go through this alone and it was a nightmare. My doctor who discovered I had lyme refused to treat me unless I was with my family and I was 54 at the time.

Definitely, go back to your parents house and find a doctor there.

For me psychiatriac meds made things worse for me. And bartonella is tricky. I just found out that klonopin was one of the worst things for a bartonella patient to take and of course I was taking it. Things got so much better when I went off of it.

xanax, I can only say from my experience. Everyone I know who takes it
gets violent.

Hmburger, the being ALONE in this IS what will put you over the edge.

Call your parents and go home and deal with this. Ask your doctor to recommend someone in that area. This is not a short term light weight situation.

Once your parents do some research they will take a more active role in finding you the best care.

good luck and keep in touch

bucci

THanks for the sweet replies. I mistyped the header to this post. I was positive for Babesia not Bartonella. I've been feeling like crap. Very tired all day, headaches that come and go, weakness, shakiness etc. I get to work with the remaining Monkees on Tuesday here in LA and absolutely cannot be in this sort of condition. My doctor told me to stop everything for now and reassess on Monday. He was the head of the firm I'm going to. He said that he thought that they maybe slammed me with too much at once and need to ramp me up to other medications. I'm just excited I may get to feel like myself for a few days. I can't tell what is herx and what is not. What I do know is that I haven't had anxiety this bad in a long time. I thought I was going to have a stroke yesterday.

Hi, Hamburg58,

Babesia is the first of Lyme and 3 co-infections that my doctor wanted to treat. I've been treating it off and on for about 6 months so far.

Babesia herxing is sometimes rough for me. For me the worst of the babesia herxing is severe fatigue. It makes me feel like I don't want to do ANYTHING. I'm normally a really active person even when I feel terrible so this is really frustrating. I also get the flu-like stuff. So far I have not had anything super dangerous show up during a herx except for spaciness which may be some type of seizure, temporary limb paralysis and heart issues. Nothing that was enough to send me to the hospital yet luckily.

My herxes have always lasted a really long time (many weeks straight). What used to help me significantly was glutathione/vitamin IV's. They don't work miraculously when I'm in a severe herx, but they make me feel slightly better. When I'm not in a herx, I can go running after I get one which is a huge stress reliever for me.

One thing you want to watch with mepron is your liver enzymes. Make sure you check them frequently and ask your doctor about taking milk thistle, alpha lipoic acid and n-acetyl cysteine to help keep them low. I went about 8 weeks without checking my liver and my enzymes got way too high. I had to go off all treatment for a long time. Then I started getting really sick and having fully unconscious seizures along with other things.

Probiotics will be important too while you are treating. I like S. Boulardii along with another multi-probiotic. The S. Boulardii can be taken right with antibiotics. The other probiotics should be taken away from antibiotics. I also take Nystatin and have changed my diet to eliminate gluten, dairy and sugar to help decrease the chances of a Candida overgrowth and avoid feeding the spirochetes.

Good luck with your treatment. It sounds like you have found a good LLMD to work with which sometimes is the hardest part. :)