I started Biaxin about 7 days ago and felt pretty good all of those days for the most part (except for a few off and on bad feelings). I think I've started my herx now though. Does a herx take 7 days to start? I know it differs for everyone... I feel so extremely sick. :-( It scares me how sick I become.
I lose my appetite. Get nauseated. Feel dizzy, lightheaded, woozy, pulse flying, shortness of breath and just plain out of it -- like I'm in another dimension. Makes me feel so ill, like I should be at the hospital (but what would they do? They know nothing about the disease.). Makes me feel like I'm a different person. Like I'm not in my own skin. It makes me feel like I'm going to die and that's what scares me the most. It's not even really PAIN what I go through as much as it is just feeling completely out of it which is very scary and makes me feel like I'm going to die.
On these types of bad days, whenever I try to nap it's almost impossible because every time I start dozing off, I awake suddenly from the shortness of breath. It's awful because sleeping is the only time I get a break from this awful disease.
I usually watch TV during these bad days, but even that is sometimes too much for me. It seems to make me sicker. It's getting to the point where I don't know what to do on such terrible days. I think about calling my LLMD but then what could he do? There's not much I could do is there? There's not much he could tell me to do.
I hate this disease. I feel so ill and so trapped. :-(
Posted by Cobweb (Member # 10053) on :
When a medication makes me feel like I am going to die-I stop it-until I can talk to my LLMD.
Several times I have tried to do minocycline-and it just ain't happening for me.
Not everyone has herxes-they are not necessarily a given-in fact my LLMD says only a small pecentage of patients really have herxes.
When a medication messes with me too much I stop it, as I said-doctor says I know what I can handle and what I can't. So we try a different path.
As far as the sleeping and air hunger- I used to use those nose bandage thingies-you know across the bridge-and I slept in a semi reclined position-not flat.
oh yeah- I quit smoking ,too. That helped a lot with the middle of the night air hunger episodes-which were ,as you described ,very very scary.
We can only help you with suggestions of what worked with us. Does your LLMD have any helpful advice for you in dealing with the air hunger?
Take Care, Carol
Posted by sixgoofykids (Member # 11141) on :
It sounds like you're herxing. Call your LLMD if you are unsure. It's true, there's not much he can do if you're herxing, but he can tell you whether he thinks you're taking too much, or whether it's a reaction to the meds rather than a herx.
Are you being treated for babesia? My air hunger and heart palpitations were from babs.
When I'm herxing, I stay in my room, too much stimulation whether it be TV, the kids playing, etc. is too much for me to handle.
Posted by AZURE WISH (Member # 804) on :
I have most the symptoms you described and I think for me they are coming from babs. Treating it now and herxing.
I am sorry you are feeling so bad.
Do you drink enough water? If I dont drink enough water my herxes are worse.
If the symptoms from a herx seem to hard to deal with (like we need sleep) I would call your llmd.
He may want to adjust your meds or perhaps he knows of something that could help make a particular symptom more bearable.
Hang in there. It will get better. Posted by disturbedme (Member # 12346) on :
quote:Originally posted by sixgoofykids: Are you being treated for babesia? My air hunger and heart palpitations were from babs.
Not yet. We just had blood taken for F's lab. Won't get an answer for a week or two. I never did get a positive WB either, so I'm so scared. I am so afraid this is something else. I'm scared it's something even worse than lyme. I don't even know what to think anymore. Having no answer to what is really my problem is the worst part. I need to talk to my LLMD but am afraid to ask him if he thinks I could have cancer or something more serious. :-(
Posted by amkdiaries (Member # 7035) on :
I was on Biaxin for two months when that started happening to me. I felt like I was in another world and not in familiar surroundings. When I told my doctor he looked at me like I was crazy and then I realized that he didn't know what to do. I just kept taking it until the exhaustion and spaced out feeling became intolerable and then I quit. The pharmacist told me biaxin can cause mental changes and since I was so afraid I chose to stop it.
Posted by cbb (Member # 788) on :
I'm not a dr, but I'll make a few suggestions.
Since you're so worried and stressed out, call your LLMDs office and discuss things with the nurse or PA. They have a wealth of knowledge and will have you talk with the Dr if they think you need to.
Be perfectly honest with them and tell them your problems and concerns. They can't help you if they don't know what is going on.
Not sure about Biaxin, but some medicines cause varying degrees of anxiety and/or depression.
Your symptoms are typical of Lyme and/or Co-Infections (especially Babesia), so concentrate on treatment for those and try not to imagine other illnesses. The added stress puts more strain on your body's immune system.
Some say a herx starts in 3 or 4 days, but that is not true in all cases. When I started IV about 15 yrs ago, I didn't herx until the 13th or 14th day. Same with my father.
Are you taking nutritional supplements to boost your immune system and keep your body as healthy as possible?
Probiotics (Acidophilus: good bacteria) - VERY important. Antibiotics kill good bacteria along with the bad. The good bacteria has to be replenished with Probiotics to prevent Candida, a systemic yeast infection that has symptoms similar to Lyme.
You should have 2 hours between antibiotics(abx) and acidophilus - before and after - or it won't be able to help you. I always plan to have my acidophilus last in the evenings. That gives it all night to work before I hit it again with more abx the next morning.
www.ilads.org/burrascano_0905.html "Diag Hints & Treatment Guidelines..." 33 pages of excellent info. Print a copy to have on hand for easy reference.
Water - lots and lots to wash the toxins out of your system.
It's difficult to do, but try to keep a positive attitude. It will help you deal with the disease.
And be sure to check with your LLMDs office to put your mind at ease.
Posted by kitkat32 (Member # 9682) on :
Sorry you are feeling so poorly.
I just wanted to let you know that I am dealing with the same issues right now.
The feeling out of it and like I am from another planet.
I also go through the worrying of whether I have the right dx or not. I think it is normal to feel so anxious while your feeling so sick.
Hang in there and I hope your feeling better soon.
kit Posted by CaliforniaLyme (Member # 7136) on :
I agree with AzureWish, often that sudden waking from sleep is Babs-
But in my experience people who are not willing to go through herxes just don't get as well.
Yes, it sounds like you are herxing.
Lyme can kill you, so can Babs.
I always had a feeling of doom and impending death when herxing-
Posted by sweet pea (Member # 6495) on :
Disturbed,
I'm sorry you're going through such a hard time.
I find that detoxing really helps me. It sounds like exercise might be too much for you, but it helps. So do epsom salt/baking soda hot baths with a shower afterward, lemonade made from real lemon juice (no sugar), and dandelion tea, which you can get in bags to make things easier.
Hope that helps and you feel better soon, P
Posted by Jane Martel (Member # 13292) on :
quote:Originally posted by disturbedme: I started Biaxin about 7 days ago and felt pretty good all of those days for the most part (except for a few off and on bad feelings). I think I've started my herx now though. Does a herx take 7 days to start? I know it differs for everyone... I feel so extremely sick. :-( It scares me how sick I become.
I lose my appetite. Get nauseated. Feel dizzy, lightheaded, woozy, pulse flying, shortness of breath and just plain out of it -- like I'm in another dimension. Makes me feel so ill, like I should be at the hospital (but what would they do? They know nothing about the disease.). Makes me feel like I'm a different person. Like I'm not in my own skin. It makes me feel like I'm going to die and that's what scares me the most. It's not even really PAIN what I go through as much as it is just feeling completely out of it which is very scary and makes me feel like I'm going to die.
On these types of bad days, whenever I try to nap it's almost impossible because every time I start dozing off, I awake suddenly from the shortness of breath. It's awful because sleeping is the only time I get a break from this awful disease.
I usually watch TV during these bad days, but even that is sometimes too much for me. It seems to make me sicker. It's getting to the point where I don't know what to do on such terrible days. I think about calling my LLMD but then what could he do? There's not much I could do is there? There's not much he could tell me to do.
I hate this disease. I feel so ill and so trapped. :-(
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