posted
I had a bad stomach bug back in February, lasted a week and I lost 10 pounds from not eating. Of course, I stopped my meds (Doxy and Rifampin at that time) till I was sure I was over the bug.
Long story short, I haven't felt well since then, and it seems to be getting worse.
I saw my LLMD not too long after the bug, and he changed my meds to Ceftin and Malarone because I was really having some upper GI issues that he figured were at least somewhat due to the Doxy.
Well, my air hunger has actually started having a definite pattern since starting the new meds--it now flares every 5-7 days--and my upper GI stuff settled down. But then I started having lower abdominal cramping and occasional diarrhea.
LLMD wasn't sure what to make of the air hunger thing, he said he never heard of that, but he wants to watch the gut stuff. He recommended stopping the Ceftin for a week to see if things settled down.
Well, I just restarted the meds after almost a week, and I feel horrible. Before I went back on them, I had terrible air hunger--much worse than usual--lyme rage type stress and horrible fatigue with the inability to sleep.
Now that I'm taking the meds again, I don't feel well in the stomach area--I'm hungry but the sight of food makes me sick. I haven't felt this bad in a long time, and I don't know what to do.
I just want to give up and forget it. I feel like I'm never going to get over this. I've even been up for prayer at church, and after hearing of others who get healed from their ailments, but I still have mine, I feel like a failure or condemned or something.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
Oh yeah, just took my temperature, and it's 99.4. My normal temp is around 97. I have been spiking these low grade fevers off and on since starting the new meds too. Don't knwo if I need to be concerned or not.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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posted
Maybe the malarone is hitting the babesia. That could be making you really miserable .. and cause the fevers.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Sounds like it is hitting the babesia. It also makes you feel despairing and depressed. Your temperature is babesia. Hang in there.
Surprising that your LLMD does not know babesia causes air hunger and flares every 5-7 days. That is classic.
It takes nearly a month for the Mepron (which is in malarone) to build up in your blood so your worst herx can be in four weeks.
Babesia can also make you not want to eat.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
It also sounds to me like the malarone is trying to work on the babesia. If the babesia meds are working your babesia symptoms will be worse initially and should improve over time.
Here is a link to one of the better articles on babesia. For the most part the article is pretty accurate except for treatment takes much longer than the article says -- plan on a minimum of 4 -6 months.
If your symptoms get significantly worse and do not start improving in a month or two then you probably will need to add in some additional babesia meds.
The infection can go dormant and the meds bring it out because they kill the infected cells -- this is actually what causes many babesia symptoms.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Starfall, You sound exactly like I was when I was on Ceftin and Malarone. The air hunger was horrible and I spent most of my time on the couch. I didn't have flares, it was everyday air hunger and herx.
I was running low grade fevers around 99.2. My morning temp used to be around 97.4. The fevers are now long gone .
By the 8th month of Ceftin and Malarone, I was like a new person.
I never had stomach issues because I put all my meds into gel caps. The pills disolves in the small intestine and don't affect the stomach.
Feb, 2010, I had the flu (H1N1) and pneumonia. It took me 3.5 months to get over that. I really think my immune system was overwhelmed and that's why it took me so long to recuperate. You may be experiencing something similar.
As far as eating, I went from 165 to 124 pounds while taking Malarone daily. (That part made me happy, instant diet). No appetite at all. I've gained about 18 pounds back.
Check the side effects on Malarone.
If your LLMD doesn't know about air hunger, you might want to see someone else. That's basic Babesia 101.
DO NOT GIVE UP !! PLEASE. It gets better but you need patience. You need to feel worse before feeling better. Everytime, you feel worse, just remember you are killing things.
Better days will come but you will have a lot of couch time before that.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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posted
Thanks everyone. I feel better, at least emotionally hearing that.
Just to clarify, LLMD does know about air hunger, but he said he never heard of it flaring every 5-7 days. Yes, I have thought seriously about switching docs, but we're so screwed up with insurance and other crap right now that I'm afraid to change anything. Maybe I'll print some info out for LLMD so he can get up to speed.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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I had air hunger every day, which is probably what your doctor is seeing in his patients. One thing I've learned about this horrible disease is that everyone is so different with symptoms.
Better days are coming, after the worst passes.
Posts: 671 | From Fort Myers, Florida | Registered: Jun 2009
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canefan17
Frequent Contributor (5K+ posts)
Member # 22149
posted
I always view high temps as a good sign.
Of course that's probably because my temps run around 96.8 and I'm jealous : )
Babesia is by far the most despairing/depressing co-infection imo.
Hang in there - it gets better
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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posted
canefan--yeah, me too. It's usually rare for me to run a fever with anything, but it has been happening since the new meds.
Actually felt half decent today after terrible dizziness upon awakening, and now since supper time I've got what feels like the crippling fatigue again.
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
How long have you been treating and how long were you on Rifampin? I'm feeling like giving up all the meds lately but I know I'll be worse off them. I've been on Rifampin but I can't think when I'm on it. Ugh. Rough day.
I'm glad you felt better today.
Posts: 2232 | From USA | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
You should be taking artemisinin on the days that you are flaring.. That is how TF got better.
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Babesia has been the worst one for me...air hunger and the dreaded sweats. I have always been a warm bodied person, but this is like walking around in my own invisible sauna. I drip and sweat while everyone else is covered up....the fatigue is crippling.... Going upstairs makes me sound like a monster out of one of the old horror movies! I did get over Babesia a while ago. But it came back for a visit... At least I had a break and that gave me hope I can get better. Passing the hope your way...
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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chiquita incognita
Unregistered
posted
Are you nauseous?
Have you tried chamomile for the diarrhea and nausea? That has helped me a lot in the past. I find if I mix it with mint it really helps a lot too.
Lavender oil can be very soothing to the digestive tract too. Just one or two drops of the essential oil in a cup of hot water as tea.
I think the gut needs shielding during abx therapy. Were it me, I would be using marshmallow root and maybe some meadowsweet herb. Take them three hours apart from meds, they may interfere wtih drug absorption, according to the herbalist on www.healthy.net
YOu can order them from Star West Botanicals in CA if you are interested in this.
This is not medical advice, just personal experience.
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I was on Rifampin and Doxy for far too long--over a year nonstop. Rifampin was rough on me for the first month and I had to ramp up and take it with lots of food till I adjusted to it.
I do have artemisinin here, I just keep forgetting to take it.
I woke up this morning feeling like I have fibromyalgia--just weird muscley pain all over. Don't get this often either. At least this doesn't bother me like the air hunger does.
Posts: 303 | From Pennsylvania | Registered: Jul 2010
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