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Posted 4/12/2016 1:21 PM (GMT 0)
Hi All,

A quick recap--I was treated for approximately 2 years for an infection (confirmed Babesia, mycoplasma, suspected Lyme) that I probably picked up more than 20 years ago. My doc and naturopath felt I was ready to wean off of antibiotics/antiparisitics, as I'd been symptom-free for more than 4 blissful, wonderful months. Completely off as of Feb. of this year, then I got bitten by TWO ticks in March.

I've been on a prophylactic 30 days of Doxy now for more than 3 weeks, and my symptoms are getting progressively worse. First there was pain in joints and muscles that migrated from lower body to upper body and back again. These are mostly gone now, replaced by severe brain fog and heightened anxiety. Today the fog was so bad that I took a day off of work. I NEVER do that, and it has me SCARED! I worked through the very worst of my illness two years ago--and it got BAD! Oh, and I've been having these weird cold sweats/chills. I took my temp during one of them and it was 96.1. Yet, I had a slightly elevated temp. earlier in the day. What the heck is going on with me? I don't know where to go next. Does this sound like Babesia? My instincts tell me to get another 30 days of Doxy, but at a higher dose (doc has me on 100 mg. 2 times a day), and add in some Malarone or Mepron. What do you all think?
Posted 4/12/2016 1:30 PM (GMT 0)
It does sound like Babesia to me, but Doxy won't help Babesia at all. As you said 200 mgs a day, Doxy won't help any of these infections. You really need at least 300 -400 mgs daily, and Doxy might not be the right choice for you at this point. It's only effective for a short time before the bacteria 'senses' it and goes into hiding.

Can you get back in to see your LLMD? That would be the best option.

I'm so sorry. I'm back in treatment for a reinfection as well. eyes
Posted 4/12/2016 1:32 PM (GMT 0)
I hate to say this, but possibly you were infected with a different strain than you'd had before?

I had Lyme for years, I believe, and my immune system kept it in check. I got bitten by a spider in October 2014 and got really sick then. I also had weird chills/fever and I got the shivers kind of on and off throughout the day. That darn spider gave me Bartonella.

I'm really sorry you're dealing with this. I hope you can stop the symptoms with treatment before they get any worse and go back into remission.

The best of luck to you!

Jenny
Posted 4/12/2016 1:34 PM (GMT 0)
So sorry to hear about this development!!

You definitely need more than 100mg 2x daily for a new tick bite and, once symptoms enter the picture, your treatment needs to be expanded (other abx) and extended.

Even though the guidelines I'm linking aren't the latest ones, Dr. Burrascano provides abx recommendations and doses starting on page 17 of the guidelines he created in 2008 (I think you'd be considered early disseminated):

www.ilads.org/lyme/B_guidelines_12_17_08.pdf

Are you able to go back to your LLMD? It's possible Babesia is in the picture but most cases require more than Malarone/Mepron since there is documented resistance to those meds.

If not, how about an herbal protocol?
Posted 4/12/2016 3:34 PM (GMT 0)
Thanks for everyone's input. The problem is that the current LLMD I'm seeing is the one who prescribed me the 100 mg. of Doxy twice a day, which makes me really question his judgement. Another issue is that he's over 1.5 hours away, one-way, I'm working two jobs, and today, in any case, my vertigo and brain fog make me feel like I couldn't safely make the drive. I saw him just 2 weeks ago, so I've got a call into the office. I'm hoping that he'll be willing to call in a higher dose of doxy and maybe something for Babs, as well. At the moment, I don't feel capable of much besides lying here in my bed watching videos on Amazon.


And cd3764--thanks for linking to those guidelines. I took a look at them and believe that I should get on an upped dosage of Doxy (200 mg. bid), as well as Malarone and Azith. I'll see if I can talk the doc I'm currently using into calling that in for me. Right now, I don't feel I can safely drive down to his office, even if I wanted to.
Posted 4/12/2016 4:27 PM (GMT 0)
Just got off the phone with the doc. He wouldn't go for malarone or 200 mg. of Doxy, but he extended the Doxy 100 mg. bid for 30 days, and added in Azith and Plaquenil. At least that's something. I'm definitely getting worse on only the Doxy, and I really don't think it's herxing, as 100 mg. bid of Doxy really isn't enough. What do you all think? I've spent the day so far lying in bed. Every time I get up I'm hit with waves of dizziness and confusion.
Posted 4/12/2016 5:35 PM (GMT 0)
I'm thinking take the new prescription and double up for a shorter period...then you have a couple weeks to find another Dr. to get you more....or add some herbal remedies to it.

If it were me, I'd do double the amount for shorter period...but support with some of Buhner herbs.
The half dose - I don't think will be effective...(IMO)

Why won't he go for the malarone? He doesn't think it could possibly be Babesia?
Posted 4/12/2016 6:26 PM (GMT 0)
I had the same thought about doubling up on the Doxy. I'm trying to remember what he said about Malarone. He said something about not wanting to send me into a really severe herx, and about the combination being effective against a wide range of tick-borne diseases. He mentioned Bart, but I'm not sure what the point was? I'm sorry--my brain is really not functioning well today. I DO remember that he said he didn't want to increase the Doxy dose at the same time as he added the others for fear of sending me into too severe a herx.

I think I need to find a new doc, though. How do I get a list of LLMD's in my area? I'm in central Connecticut.
Posted 4/12/2016 7:49 PM (GMT 0)
Is it the infections causing these wild temp. fluctuations? My temp. went up to 98.4 earlier today--after I was lying in bed resting. Got back from CVS and felt flushed/feverish and weak. Took my temp and it was 95.1. What the heck?!
Posted 4/12/2016 10:35 PM (GMT 0)
I am sorry to hear that you feel unwell.
If you want to find a new LLMD, you should open a topic " Looking for LLMD in Connecticut" and someone will respond.
Good luck!
Posted 4/12/2016 10:45 PM (GMT 0)
For me, temp fluctuations were from Babesia I believe.

To find a new LLMD, you can send me or one of the other Mods an email by clicking on the screen name or the small blue envelope under the screen name. We may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and we will be happy to share the names we have.​


You can email the Tick-Borne Disease Alliance at [email protected]​


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/


And a new resourcewww.LymeDoc.org
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