You're not going to believe this.....and then again...

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Joanne A
Regular Member


Date Joined Jul 2006
Total Posts : 451
   Posted 1/28/2009 11:13 PM (GMT -6)   
Hi All,

I have not been here for a very long time. If you don't remember me I have been on abx for 2 1/2 yrs. now.
I don't know how my stomach has held up taking the abx for so long but I am very good with throwing those
probiotics down my throat several times a day!

You may find this interesting and that is why I want to share this with you all. After all this time on meds I finally got positive lab tests for Babesiosis and Lyme. Never before have I had positive lab results but my LLMD was treating me for Babs and Lyme for all this time. Now I have proof! I've always used that "peeling onion" image in my head when it came to treating these diseases and this just adds to that visual
for me.

I am functioning pretty well. My thoughts are to pursue IV abxs in the next couple of months. I want to zap them with IV meds and then be done with this all. I doubt if the insurance company will approve it but I may be able to do it with some money I have saved.

You are all in my thoughts and prayers. Stay positive.

I am feeling very well at the moment. I function and do everything I want and need to do. My pattern now is to feel great for 6-8 weeks and then feel like crap for a couple of weeks. Strange herxing pattern, but it's been like that for the last 6 mos. I have no more neurological symptoms but what's left are headaches and muscle
soreness and cramping if I do too much.

My state's Health Department called me to investigate my illnesses. Apparently they were notified by the
lab. Did I give that woman an earful! She didn't even know the symptoms of babs.

bcaring
Regular Member


Date Joined Feb 2006
Total Posts : 346
   Posted 1/29/2009 8:31 AM (GMT -6)   
Joanne,

THAT is unbelievable! I mean really - you are the first person I have known, so to speak, that this happened to.

I have heard doctors and LLMD lecturers say that this can happen and I had my doubts. I just never could quite meet the CDC criteria. I have also had secret longings that it would happen to me.

You should make copies along with a cover letter and mail it to every creep who has given you a hard time. Be sure to cite from a scientific journal that patients can turn sero-positive after treatment - yes, even after years! Mail it to the Infectious Disease Society. Mail your story to your local newspaper. Threaten your insurance company if they refuse IV. Your doctor should be able to convince them that this is medically necessary. GO GET EM for all of us.

One problem - those who refuse to even believe the Western Blot testing will find some way to rationalize it all away. They would say you were probably just bitten!

Congratulations - you are now official!!!!

Beth

stutterbug
Regular Member


Date Joined Jul 2007
Total Posts : 478
   Posted 1/29/2009 8:37 AM (GMT -6)   
JOANN: I was wondering what abx you are taking and at what dosage. thanks, amey

susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 1/29/2009 10:19 AM (GMT -6)   
Joanne, that is good news...it's nice to have a positive test...even if we don't really need one. Absolute proof, huh?! I completely agree with bcaring....send that out! Proof that negative tests aren't always accurate! The IDSA will probably just bury it, but they should still see it. Some of those IDSA doctors in the Under Our Skin documentary made me just livid.

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 1/29/2009 2:40 PM (GMT -6)   
Did you do mepron/zithromax for babesia in the past?

Joanne A
Regular Member


Date Joined Jul 2006
Total Posts : 451
   Posted 1/29/2009 7:51 PM (GMT -6)   
Hey Everyone,

Thank you for all the support! Beth, you are getting me psyched! I'm ready to go get them! If I ever sent my stuff to IDSA they would flip. I happen to personally know one of those docs on the Board--he's not a medical doc, he's an entomologist and was my neighbor when I lived in NY. And my own PCP... I should send him the results too! I've tried to avoid him for the last year or so--kinda hard to see a doc who doesn't believe Lyme lasts in your body thus it's all in my head! I think I WILL push my stupid mega humongo insurance company. Hell, they haven't been paying for my antiobiotics!

Stutterbug, here's the abx history; May 2006, doxy (400mg) to February 2007, Feb 2007 to Jan 2008 it was minocycline (dosage? forgot) w/ malarone and lastly zithromax (500 mg) with Mepron (2 tsps/day). This last time I started the mepron I got a HUGE herx, one of the roughest I ever had. I've been on it for months now and I'm into my last bottle. My good old wonderful LLMD put me on the mepron knowing that I live in a highly endemic area for Babs as well as Lyme. Smart guy. We also noticed that when I got off the malarone and later with the mepron, I would slowly start hurting again. We never knew if it was the antibiotics no longer working or the absence of babs meds. We now know!

Charlie, yes I did have some cognitive issues along with the neuro ones. I had word finding difficulties and I would get angry frequently. Along with the numbness & tingling I would have sharp nerve pains in one thigh and awful ITCHING! I would also get jumpy--able to fall asleep and then I would jump awake. And I kept dropping things! Yes, they have disappeared all with oral antiobiotics. Charlie, it was a long, long route doing it with orals and I would have freaked if my LLMD said early on that I should go the IV route. I don't feel that way anymore. I just want to get this over with!!! I know that once you get a PICC line in you don't know how long you are going to have it and that may be disturbing but I am SO ready to get one now. People talk about going off antiobiotics and going the herbal route but I just can't do that until I try the IV abx. Charlie, why not start the IV process with your insurance company and see how it goes? If they say no, well you can just continue with the orals anyways.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 1/29/2009 8:19 PM (GMT -6)   
why is it that doctors are such a#$%^ when it comes to lyme?

anyways, could you have been reinfected?

Joanne A
Regular Member


Date Joined Jul 2006
Total Posts : 451
   Posted 1/29/2009 8:23 PM (GMT -6)   
No way could I have been reinfected hopingtoFindCure. I don't walk on grass, I only walk on cement or tar.

susan1122
Regular Member


Date Joined Jan 2009
Total Posts : 42
   Posted 1/29/2009 9:46 PM (GMT -6)   
Hi All,

Just wanted to say that I had a PICC for over a year (in 2001-2002) and recently did IV Cancidas for Candida. I guess it kind of gets in the way...but I really didn't find it all that bothersome. I don't remember having problems sleeping with the PICC...just the insomnia. ; ) And the PICC line wasn't painful. I'd say if you need it, it's worth it.

p.s. I don't know about playing basketball....maybe just try not to knock it about.

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 1/30/2009 11:39 AM (GMT -6)   

If you are still getting a positive babesia test result after many many months of mepron/zith, i think it is time to find a more effective solution to your babesia. I don't know too many that have beat babesia with mepron/zith. There are some that say it is gone but most of the strains of babesia cannot be fully eradicated with this mix.

Ask you LLMD about Primaquine/chloroquine/biaxin. Chloroquine is only taken for the first 2 weeks and primaquine is taken for the duration(months). I know of quite a few who have beat babesia with this mix. And your insurance company won't get pissed off because this combo is very cheap. It is also better to combine this mix with biaxin.

There are other more effective/cheap babesia options such as Clindamycin/quinine but i think this option is last resort. You should also consider adding artmenisin to the babesia treatment. Some have even used tafenoquine and alinia for babesia.

It has been said many times before. "you can't make lyme go away until you tackle babesia"
 
But if you believe that IV abx is the route and your babesia infection is gone, then i'd say, disregard what i mentioned.

seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/30/2009 11:49 AM (GMT -6)   
Phsinvent- very interesting. Are you saying the three are taken for months or drop the chlorquine and just take the biaxin/prim?

phsinvent
Veteran Member


Date Joined Aug 2006
Total Posts : 1155
   Posted 1/30/2009 1:11 PM (GMT -6)   

Primaquine and Biaxin throughout the duration of treatment. Chloroquine only for the first 2 weeks and possibly replace chloroquine with bactrim. Also maybe add artmenisin to this mix.

You really want an antibiotic there to treat lyme or bartonella at the same time.


seeingstars
Regular Member


Date Joined Apr 2008
Total Posts : 266
   Posted 1/30/2009 4:30 PM (GMT -6)   
Phsinvent-

I read on the web http://en.wikipedia.org/wiki/Primaquine

When attempting a radical cure, primaquine requires the presence of quinine or chloroquine in order to work. If primaquine is given alone, the cure rate is only 21%. This is why primaquine should always be given with quinine or chloroquine. It is not known if other antimalarials such as mefloquine are likewise able to potentiate the effect of primaquine.

That's why I questioned dropping the cholorquine. But If that worked for others I am all for less meds as opposed to more.


I'm always interested in your thoughts. Thanks
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