posted
I've been on treatment for Lyme Disease for 10 months. I haven't had much improvement. When I was first dx'ed my CD57 number was 174. I also had a low red blood cell count. I remember reading that babesia can affect your red blood cells.
I did take Malarone for a couple of months. I didn't see much improvement so my llmd started focusing on just Lyme Disease.
Well, I'm starting to wonder if I should start treating babesia and maybe even bart. I have a few symptoms from both of those co-infections (then again those symptoms are also Lyme Disease symptoms). I just keep thinking since I'm not making much of improvement that there must be something else.
What do you think?
Also can you treat all 3 (LD, babs, bart) at the same time?
I have a dr's appointment tomorrow, so I'll discuss this with my doctor, but just wanted to get some other opinions.
At my last appointment I was actually feeling a little better. I had taken a month off of flagyl. I think that the reason I was feeling better is because a lot of the bacteria had changed into the cyst form.
Since I was feeling better, my doctor was thinking of taking me off antibiotics at the next appointment, but I think that would be a bad idea now. Obviously.
I need some help in deciding what to do next.
Posts: 248 | From Tejas | Registered: Jun 2007
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posted
up for more help
Posts: 96222 | From Texas | Registered: Feb 2001
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Hi Lauren, Here's what my LLMD said: "if you have a high CD-57 count (which you do, congratulations!) and you are sick, chances are you are sick with a co-infection or two, not so much Lyme. And you can't get rid of Lyme until you get rid of the co's."
This has proven highly correct in my case.
I note that you only treated babesia w/malarone for a couple months. Babesia, per Dr B, requires at least 4 months of treatment. Bart also needs attention for at least that long. Many on this site have needed longer treatment, or have had to retreat.
Maybe you could have your LLMD read Dr B's 2005 guidelines? I've also heard you can't get rid of Lyme until you get the co-infections (esp bart, because it is immunosuppressive). So go get those co's! They are not to be underestimated.
Posts: 3528 | From US | Registered: Apr 2007
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Boomerang
Frequent Contributor (1K+ posts)
Member # 7979
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quote:Originally posted by CD57: This has proven highly correct in my case.
I note that you only treated babesia w/malarone for a couple months. Babesia, per Dr B, requires at least 4 months of treatment. Bart also needs attention for at least that long. Many on this site have needed longer treatment, or have had to retreat.
What great information, CD57! I think that has also been proven correct in my husband's case.
He is currently on doxy and levaquin.
Sixgoofy, I am amazed at what all you are taking. Are you seeing good improvement?
Best of luck to you, Lauren.
Posts: 1366 | From Southeast | Registered: Sep 2005
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Cass A
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Member # 11134
posted
My LLMD prefers to CONCENTRAIT on ONE, while also treating for the others, but less. His experience, he says, is if you go after one exclusively, when it is about handled another will start becoming very obvious, with overwhelming symptoms. If you quit the first to go after the second, the first isn't really gone, and you end up needing to re-treat.
However, if you do nothing about the one that is now causing the most problems, the person has a horrible time of it!!!
This circle can go on over and over for years.
Apparently, the co-infections "cover" for each other like tag-team wrestlers! (They also cheat!!)
I'm currently near the end of his Babs treatment (which also includes some Bart and Lyme as well). I would say I've made good progress, but I can't really speak to the overall workability of his theory, as I've only done one part (and that's not complete!).
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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quote:Originally posted by Boomerang: Sixgoofy, I am amazed at what all you are taking. Are you seeing good improvement?
Yes I am. I was up to 98% on that combo, but we scaled back to herbs. I had not been 2 months symptom-free (still herxed and was 98% not 100%), so had symptoms return.
I started back on those meds three days ago. I'm herxing from them now .... but I'm just fatigued, so I think I will bounce back quickly. I had only fallen back to 78%, so I don't have too far to go to get back to where I was.
But, yeah, GREAT combo! I felt normal again!!! The first two days I was back on it, I felt 85-90% again until this herx started.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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I'm currently on Rifampin, azithromycin, doxycycline, plaquenil, artemesia (soon to change to artemesinin) and soon to start enula. In addition I'm on the following herbs, red root, boneset, and stephania root. All for Lyme, bart, and babesia.
Posts: 975 | From California | Registered: Apr 2007
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CD57
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Member # 11749
posted
I have the same doctor as psano and just finished 9.5 months of Rifampin/doxy/mino/Bicilin. At month 7 we added Buhner herbs for bart, and I got my butt kicked (bart not gone).
Now I am about to start Levaquin/doxy/mino/Bicillin, plus resveratrol and stephania, for bart and Lyme.
Posts: 3528 | From US | Registered: Apr 2007
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My dr. decided to put me on a bart/lyme treatment. That way we can know if it's bart, or babesia, or maybe both that I have.
So on Monday I'll be starting levaquin. I'm kind of scared about that because I've heard it can be a rough antibiotic. I just hope it helps me!
I'll also continue with pencillin since It's been causing me to herx. Along with that I'll be taking diflucan 1X a week. He also prescribed probenecid. It's supposed to make the penicillin stay in the body for longer. I think keeps my kidneys from filtering it out as fast. Has anyone ever taken this?
He took me off of flagyl, but said next month he'll put me back on it. I hope just one month doesn't cause the bacteria to go in cyst form. I've been on flagyl for pretty much my whole treatment, so it makes me nevous to give it a break.
Posts: 248 | From Tejas | Registered: Jun 2007
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I just checked the drug interactions of the new meds I'll be taking and I got this:
FLUCONAZOLE (in Diflucan Oral) may interact with LEVOFLOXACIN (in Levaquin)
While the exact mechanism of this interaction is unknown, it is suspected that the use of fluconazole together with levofloxacin will result in an abnormally slow heart beat rhythm. As a result, the regular rhythm of heart contractions will be altered and the potential of a life-threatening arrythmia (abnormal heart beat) may occur. In general, altering the rhythm of the heart beat may be dangerous or potentially life-threatening. Fluconazole and levofloxacin are generally not recommended for use at the same time. However, if these drugs must be used together, your doctor may want to monitor you closely to make sure that you have normal heart function. Ask your healthcare provider about these drugs and this potential interaction as soon as possible.
This interaction is poorly documented and is considered major in severity.
I'll only be taking diflucan 1X a week. Do you think I should be worried about this??
Posts: 248 | From Tejas | Registered: Jun 2007
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CD57-how do you take the resveratrol? With other meds, with food, without etc? My LLMD told me to take it, but gave me no info.
Posts: 561 | From eastcoast | Registered: Aug 2006
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In his book, "Healing Lyme," pg 102, Buhner says it "will inhibit NF-kB upregulation, stopping the inflammatory response that is so important for endothelial penetration by bartonella organisms.
It is also an angiogenesis modulator and will stop the angiogenesis-stimulating action of the bacteria. It is a potent inhibitor of vascular endothelial growth factor, which is stimulated by the bacteria.
It will also address most of the symptoms of bartonella infection and protect the heart from inflammation."
Angiogenesis = growth of new blood vessels Endothelial - cells comprising the inner layer of blood vessels
Posts: 13116 | From San Francisco | Registered: May 2006
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I am currently taking rifampin, doxy, ceftin and tindamax and am trying to figure out what i could do to treat bab's at the same time. I was thinking about adding bactrim maybe with a macrolide even though i just stopped biaxin to start rifampin. Would bactrim w/o a macrolide be enough for babs or would i just be poking it with a stick?
Posts: 113 | From south dakota | Registered: May 2011
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Can you please spell out the names of these meds? I need to get more aggressively treated and want to give my run-of-the-mill doctor some ideas. He told me he has treated five patients (other than me) for Lyme this past summer. If he treated them with 2 weeks of Doxycycline like he did me they are all still infected.
Posts: 4 | From Pennsylvania | Registered: Oct 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
zith is zithromax. Other than that, all of the meds are spelled out in kramberry's post. Abart is not a prescription medication but an herbal type remedy from Byron White.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I'm kind of an old timer on here and just wanted to add another perspective. First off 10 months really is not that long to treat and would not be alarmed that you don't have alot of improvement yet.
Secondly, there are a percentage of us on this board who cannot take multiple drugs. We do not improve on many antibiotics at the same time. In my case, went 5 years before finding out that taking less made me functional and feel better.
I know many will disagree, however may want to consider less antibiotics and more detox.
Good luck, hope you begin to see improvement soon.
Posts: 366 | From Louisville KY. | Registered: Nov 2003
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