Topic: Babesiosis sufferers: Who feels horrible the entire tirme duing treatment?
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi everyone. I have treated Babesiosis before and am treating it again. Whenever I am on Mepron I feel horrible the whole time during treatment--very fatigued, weak, short of breath, weak muscles and all the other Babs symptoms.
Do others feel bad every day or do your Babs symptoms cycle?
Thanks for your responses!
Posts: 4682 | Registered: Oct 2000
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posted
My son had Lyme in 2006 and went through 3 rounds of abx. He felt horrible the whole time he was on meds (both oral and IV). On the oral abx, he also ran a fever for weeks on end that was a predictable 100.6 degrees. I did not track his temp while on IV abx.
He was infected again in July 2008 and was on abx for 60 days and agin felt awful the whole time. Extreme fatigue, sleep disturbances and insomnia, achy and unable to concentrate, which were the same symptoms he had before.
He's visiting with his father now and has been complaining about headaches and severe fatigue. I just got test results yesterday (not Western Blot) showing him to be highly reactive to Lyme Disease antibodies. So here we go again.
Hope you start feeling better soon.
-------------------- Audrey Posts: 19 | From East Lyme, CT | Registered: Feb 2007
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Sammi
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Member # 110
posted
Audrey, thanks for your reply.
I am very sorry your son is feeling bad again. It is so unfair, especially for children.
I hope he responds quickly to treatment.
Posts: 4682 | Registered: Oct 2000
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AZURE WISH
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posted
My herxes are much worse with babs (as compare to lyme)
here is the link to a thread I started titled "How far into babs treatment b4 u started to feel okish?"
Melanie Reber
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Member # 3707
posted
Hey there Sam-I-am, I'm raising my hand over here because I also feel awful when treating Babs.
The first week (day 3-5) is really bad and then of course when that monthly thing rolls back around that is not too much fun either. I really don't ever seem to get a 'good day' in between.
My first stint was about a year and a half and this time I have been back at it since the end of January.
What I did learn, finally, was I am simply not able to tolerate the full does of any med now, so as of last week, I cut practically everything in half, and am doing SO much better.
I still feel awful enough to know the goop is working but not too awful to function most of the time.
I sure hope you can find some relief very soon. M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Hoosiers51
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posted
I felt horrible on Mepron.....it gets worse and worse the whole time I'm on it.....terrible fatigue, weakness, etc.
I heard from a few people that for people with bad adrenal fatigue or mitochondrial issues, Mepron can really cause severe fatigue.
I think that is the most logical explanation for me, because I was on it for 5 months at one point, and finally had to stop, because it was clear I was just getting worse.
I do test positive for babesia duncani and positive on the Igenex FISH.
I seem to do better on Malarone. Artemisinin is a good one too, but start slow with that.
I am the same way with some antibiotics too though, just sicker and sicker while I take them. This was especially true on IV abx. So maybe that is more of a detox issue. Not sure. I am now doing more detox measures, but none of it seems to help.
The three supplements to Lyme treatment so far that help me are high doses of Wobenzym (12-15 at a time on an empty stomach), Low Dose Naltrexone (www.lowdosenaltrexone.org), and sea salt throughout the day.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Sammi
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Member # 110
posted
AZURE WISH, thanks for the link to the other post. How are you doing now?
It seems like many people feel crummy during treatment. I felt crummy the other times I treated Babs also, but I guess I forgot how bad it can be!
Posts: 4682 | Registered: Oct 2000
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posted
I do not feel bad the whole time I am on it.
I am treating Bart and Babs at the same time. The first time I took Mepron I did feel bad for 2 months out of the 4 and then was switch to Malarone which did not help at all.
This time I have been on Mepron since Feb. and I did not have a hard time with it except the first few weeks.
I think the key for me was I am doing a lot of detoxing!!!!
Posts: 476 | From Columbus, Ohio | Registered: Aug 2007
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Melanie. I am sorry you are treating Babs again also. I know what you mean about having no good days.
Can I ask you how much you cut back the meds?
I was taking Rifampin along with Biaxin and Mepron. Rifampin can make the Mepron less effective, so we cut it out two weeks ago. I expected to feel worse if the Mepron was better absorbed. I felt bad before cutting out the Rifampin and I feel bad now!
I may consider cutting back to see if there is improvement.
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi Hoosiers51. Thanks for your reply. I am sorry you feel horrible on Mepron also. I do have adrenal issues so maybe that is a clue. Sea salt is good for adrenal insufficiency.
Malarone does not seem to work for me. I take Artemisinin which I feel does help. I also take LDN and feel it is beneficial.
Maybe I will look into the Wobenzym. Is there a specific brand that is best?
Posts: 4682 | Registered: Oct 2000
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Sammi
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Member # 110
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Stacyb, thanks. Malarone does not work for me either.
I think I will step up the detoxing and see if it helps.
Posts: 4682 | Registered: Oct 2000
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Lymeorsomething
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Member # 16359
posted
I've been back on Mepron and feel like hell too. I don't think one can attribute it all to herx...it's a pretty strong drug. As Hoosiers said, it may play with your adrenals a little.
I still work full-time too...so it gets tough to drag through the day. Sometimes I drop my dose to half or take a day or two off (the Mep) to shake free from that cloud...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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posted
Malarone has been a great drug for me. I just have one persistent symptom left after 6 months on Malarone. I have zero side effects from Malarone which is a godsend when you're on so many things that DO have side effects.
While Malarone has been one of the best drugs for me... abx, well that's a whole other story.
Happy Healing!
Posts: 19 | From Mississippi | Registered: May 2008
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Sure...
I am currently taking only 1tsp. of Mepron along with 250mg Zith and 100mg Art. I do all three together in the evening only now so I can sleep through the worst of it. At least that is my theory.
I'm still on several meds for asthma, thyroid, and sleeping along with extra calcium w/ trace minerals to help with the cramping and extra acidoph.
I'm doing a 3 week pulse, then a Doxy stint for 10 days, then back to the three week Babs stuff. I know I need to add in some Penicillin very soon, but am waiting to get stable on these meds first.
It was REALLY difficult for me to accept doing anything less than the required doses, but my body simply will not cooperate doing that any longer.
Posts: 7052 | From Colorado | Registered: Mar 2003
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