I have been treating babs with malarone for a week and a half and am feeling so
horrible im considering going to er,even though id rather chew my foot off.
im so weak I cant get out of bed but for a few minutes, im realky short of breath and the pain is incredible.
Havent been able to eat for two days, just curled ip in bed tryin not to move,
I have never felt this bad. I have had bad herxes but this is crazy.
of course I cant get ahold of llmd. Any suggestion? About in tears and dont knoe what to do.
Posted by BoxerMom (Member # 25251) on :
Can you reduce your dose or skip a dose til you get through to your doc? Don't herx your way to the ER.
Detox. Drink plenty of water.
Take this opportunity to learn how much Malarone you can handle, herx-wise. Babesia takes a while to get rid of.
It's miserable. So sorry.
Posted by jnathan (Member # 41040) on :
I take two a day. I skipped this mornings dose. I'm trying to hold out. I just didnt know if this could be a herx or anemia? My lllmd is three hous away too.
Posted by BoxerMom (Member # 25251) on :
Did this start with the Malarone, or were you backsliding with Babesia symptoms already?
That's a low dose, but we are all different.
LLMD offices should return calls. It's irresponsible not to. They have too many sick patients.
Hound them if you need to.
Posted by jnathan (Member # 41040) on :
I was feeling decent before malarone. The weakness shakiness is all new.
Posted by BoxerMom (Member # 25251) on :
Herx then. Typical Babs' herx symptoms.
It should subside if you skip a couple doses. But do figure out your tolerance. It's best to treat Babs long-term til symptom-free.
Posted by jnathan (Member # 41040) on :
Thank you.
Posted by mlg (Member # 35383) on :
It sounds like babesia or proto.
You might need to change your treatment protocol.
Posted by Mtn Girl (Member # 38587) on :
I experienced the same weakness, shakiness after starting on Malarone. I could only be up for a few minutes at a time. Even vibrating sensations if I was up too long.
But it was worth it! It was the best thing I did in my 4 years of Lyme treatment.
I don't want to encourage you to go against your LLMD's orders but starting out on 2 pills a day seems like too much. I started out on 1 and eventually did 4 a day. But there again everyone is different. I'm just saying, I don't think I could have done 2 a day in the beginning.
Posted by Catgirl (Member # 31149) on :
You're herxing. Try taking stuff for detoxing: lemon water, alka seltzer gold, etc.
I know this sounds counter intuitive but exercising (with light weights only) is by far the best form of detoxing I know. At my sickest and whenever I herx, I lift some tiny weights while watching TV, and within 15 to 20 minutes I feel MUCH better. It clears the lymph system fast.
If you don't feel any better after detox efforts, then you could always try knocking back your dose like Mtn Girl suggested. Also, I agree with mlg, you could have proto.
Also, you might avoid the ER. They won't know anything about babs or how to properly treat it, nor will they attempt to treat it without getting a positive blood test for it. Plus, they will probably want the name of your LLMD.
Posted by groovy2 (Member # 6304) on :
Babs herxing for me was by far the worst-
The main thing I could suggest is to drink a lot of warm tea or warm water -
Posted by seibertneurolyme (Member # 6416) on :
Babesia, just like lyme, affects different people in different ways.
Since hubby's primary babs symptoms were seizure like episodes along with Parkinsonian tremors and myoclonus and dystonia and other movement disorder symptoms he actually felt better the higher the doses of babs meds he took. He had very little herxing with babs meds -- just felt better and had more energy and less nausea and vomiting and neuro symtoms.
Steve actually felt noticeably better on 6 malarone a day instead of 4, plus he was also on doxy and art and lariam all at the same time.
But in the end he did finally have a really bad herx which the hospital docs refused to believe and treat. He had 3 days of shortness of breath (a new symptom for him) and ended up in the ER with lung failure. After the bronchoscopy he was on a ventilator for 3 weeks before he died from ARDS (lung failure) and a splenic infarction (blood clot in the spleen) from babesia or a similar blood borne parasite.
We did get a CDC positive blood smear from Clongen for babesia on the day he died. And later Fry Lab found 3 different blood borne parasites by PCR.
I don't want to scare you. But you just need to be aware that babesia does affect the lungs in about 20 percent of patients. So please, if the air hunger gets too bad do not ignore it. Some babesia patients actually have to be on supplemental oxygen to get thru babesia treatment.
Hubby had been treating babesia aggressively for about 14 months when he took a 2 month med break in early 2012. Then he got 2 new tickbites and 5 1/2 months later he died on 10/9/12. He was disabled with tickborne illnesses for a total of 12 years.
You might want to consider adding in art or crytolepis to your babs treatment. Some people do better with babesia herbs than meds. The first time hubby's seizure-like spells went away in 8 years was when he took cryptolepis -- but he had to take 3 times the normal dose.
While on the very aggressive babs meds he was seizure free for about 1 1/2 years before the 2nd new tickbite.
Bea Seibert
Posted by Brussels (Member # 13480) on :
Me too, never herxed so bad in my life as with babs. No binders = feeling I was dying.
With LOADS of different binders taken many times a day, life went on almost like normal. (except for the fact I was ingesting all those herbs, suplements, and homeopathics to withstand babs herxes).
Posted by jnathan (Member # 41040) on :
What binders did you take? I had to back off for a few days.
I really thought I was going to die.
Did go to er and they thought I had a uti, im still having excruciating back pain.