My symptoms: air hunger, sweating all day and night and then chills, crying a lot, when talking to people, feel like I'm there but not there, cannot really explain it but like looking down at the conversation, headaches, anxiety through the roof even though on Ativan, knuckles hurt, still starting mepron and ABABS. I am not on much medicine at this time, mepron 1/2 tsp twice a day and feel terrible. Is this all babesia as I came out positive for lyme also? Also eyes are very blurry although I have grave disease, got really bad a year ago when all my symptoms appeared.
My llmd wants me to start wellbutrin tomorrow, any thoughts would be appreciated. Sometimes feel like I am going crazy.
Oh and I forgot to mention this: terrible memory issues, get lost sometimes driving, cannot remember an hour ago. what the heck is wrong with me?
Posted by foxy loxy (Member # 47053) on :
Sounds pretty classic to me. But you should be working on your lyme too.
I know just how you feel about going crazy... I am sorry... it is soooo tough! I still get bouts of that! hang in there, the wellbutrin, really might help you through this!
Best wishes
Posted by lindadanis (Member # 51204) on :
thank you foxy loxy. My llmd wants to start slow she said as she think my anxiety is too high., that is why she put me on wellbutrin. I shake all day, go from sweating to freezing cold. is this normal?
Posted by lindadanis (Member # 51204) on :
I guess I might have what they call derealization. can someone explain this to me exactly how you feel. I am also very sound sensitive, any noises freak me out. so scared that I am never going to be normal again. is this all neuro stuff?
Posted by Bartenderbonnie (Member # 49177) on :
The best way to describe Lyme and Company . . .
You will feel unwell. Very sick. Horrible, scary, and very debilitating symptoms. It will be rough ride. You will get better, many others have. Proper treatment with a good LLMD is the key.
I won't sugar coat it. Expect atleast 1 year of treatment. Lots of money. Many ups and downs. Slowly each symptom goes away. Stay the coarse, keep treating and keep fighting. Posted by Lymetoo (Member # 743) on :
Sounds like your adrenal glands are also a mess?? Ask your doctor about that as well.
Posted by lindadanis (Member # 51204) on :
thanks for the replies. My daughter 15 years ago had lyme and bart., when she was 16 and it took five years for her to get completely better so yes, I get it. This disease is horrible. I have many different symptoms than her, a lot of neuro stuff such as depression/anxiety but she did not have babesia which I do. I will keep fighting, have no other choice but just feel so off every single day. I just got diagnosed after being sick for a year, almost ended up going to a psych hospital before I thought "maybe I have lyme" and got tested. I have read that babesia is hard to get rid off and am wondering if the mepron and ABABS is going to do the trick or will she put me on another drug to add in. I was on zith but could not tolerate it. I just started Wellbutrin yesterday praying it helps settle this terrible anxiety down.
Thanks again for your input, I appreciate it
Posted by Brussels (Member # 13480) on :
Binders. That is what comes screaming in my head.
Binders, organ support.
Binders + organ support + detox support is THE main treatment for chronic lyme disease, in my opinion.
Antimicrobials come behind that, for sure. Just keep reading how people react here.
Pushing treatments to kill only is a wrong way to go, in my experience. They will make your body even weaker, charge the adrenals, clog the liver, lymph system, damage the kidneys.
Plus your brain gets mad, you can't sleep, neuropathy, tinnitus, etc just come. They do not come and go, usually. They come and STAY.
That is why I would concentrate in finding good binders, organ support, system support, so that you can ALLOW your body to fight babesia successfully.
That's my opinion.
But just relax a bit: for me, babesia herxes were the WORST of all infections. Candida and fungi come second. Borrelia comes on third place, in my case...
So if you win this babs fight, next steps will be easier, herx-wise, I mean. At least, it was for me.
Posted by lindadanis (Member # 51204) on :
Brussels, thanks again for trying to help me out. This is how I feel all the time. My llmd said to detox using five charcoal capsules daily, take Epson salt baths. that is it. she said nothing else. from the moment I wake up, I am hot and sweaty, stomach pains, anxious, is this all herxing Brussel or is it babesia? I am so confused as to what to do because she doesn't explain nothing to me. I also started Wellbutrin yesterday, half a dose.
Posted by lindadanis (Member # 51204) on :
I have felt this way all the time since I started mepron six weeks ago, it is the same all the time. what is going on with me? and how to I fix it?
Posted by foxy loxy (Member # 47053) on :
try l arginine for the sound sensitivity. start out with a few grams and build up to ten grams daily. L arginine helped my hearing sensitivity.
It sounds like you are battling similar things as me! Posted by Brussels (Member # 13480) on :
Charcoal is one binder, that can't be anyway taken for too long (as it binds to good minerals, as far as I know).
charcoal for me was good only in rotation with other binders.
did you try chlorella? MSM powder, DE, zeolites?
there are many other alternatives.
I was taking about 5-10% of antimicrobials: the rest was a whole bunch of treatments for supporting my body.
I can't just explain it simply as I was using dr. K's approach, and my lyme drs approach, and my own treatments (that I muscle tested on myself).
It seems to me that it is herxes. Or flares. Or both.
Whatever they are, you need binders and support.
I remember doing / taking about 60 treatments / substances a day to withstand my worst babesia herxes.
As I said, antimicrobials were just 5-10% of those 60 things.
Many homeopathics, acupuncture or acupressure, meridian balancing, binders, organ support (each organ needs a complete support), symptom relief treatments.
In fact, THAT PART is the hardest part to manage, because prescribing antimicrobials is the easiest part of the equation.
These die off toxins are very toxic. Extremely toxic.
I think of them a bit like chemiotherapy: they damage organs, cells, systems.
Why leave them there and make your life miserable?
Not only life is miserable, but your immune system can't work well with a clogged lymph, clogged liver and gall bladder, a toxic gut, toxic kidney, toxic nerves...
It's very easy to prescribe antimicrobials and leave patients without any help to find out the rest of the 90% of what is supposed to be their treatment.
Either you have to find out by yourself, or change LLMD. But whatever person you see, you got to do a lot on your own.
I use energy testing to find out what my liver wants, my kidney wants, my lymph etc. So did my doctors.
You can do without energy testing, but it takes more time to find out substances, by trial and error.
Never ever I would kill babesia and take charcoal and Epsom salt baths and lemon water ONLY.
They are all good, I don't say they aren't, but in my case, that would be totally insufficient.
That counts as 3 treatments but still misses 40-50 other things to do, if you see what I mean...
Don't tell me you aren't even on milk thistle?
I admire some people that need barely nothing for surviving babesia or lyme herxes. I was not the lucky one...
Posted by Told you I was sick (Member # 35068) on :
linda-
Cripes. Time to consider another Lyme-aware physician if yours has not prescribed another medication along with the Mepron (for your Babesia).
The common strains of Babesia that affect man -at least those that are tested for today- are notorious for having become increasingly resistant to the tools of yesterday. Babesia microti and duncani (WA-1) should not be treated with monotherapy. Mepron and quinine used to be the go-to regimen many moons ago, now, and for many years, Mepron has been combined with Azithromycin. Sometimes, the antibiotic Clindamycin, or ones in the Sulfa family (ie Septra) are utilized. Other drugs for Babesia include Malarone and sometimes Alinia. Coartem comes to mind as another medication of choice. Without giving names of brands, there are several herbal blends available that tout healing benefits from Babesia. It is also known that Artemisinin, NEEM and Cryptolepis are herbs that have been used to target Babesia infections. Being out of the Babesia loop for some time, now, I’m sure that there are at least a few more treatment resources available today for this insidious disease. I hope that others who know more will chime in to help you.
Best of luck in your treatment journey and recovery.
Told you...
Posted by lindadanis (Member # 51204) on :
thank you again very much. Yes, she has mentioned adding clindamycin in a few weeks. also she has mentioned adding cryptolepis and artemisinin as well. I am more interested in going the herbal route so I see her April 11th to discuss. She has only mentioned taking charchoal capsules 5 a day and a Epson salt bath. nothing else so now I am concerned about her. I feel hot and sweaty all the time and I am going to figure this out with or without her, even if I have to change doctors.
Posted by lindadanis (Member # 51204) on :
No Keebler, I do not take milk thistle, not even sure what it is or where to get it and NO, she did not tell me about it. I am getting very concerned. I woke up last night and you could ring out my hair it was soaking wet, from sweating. Is this normal Keebler? Not the first time this has happened, my entire body was drenched.
Posted by Bartenderbonnie (Member # 49177) on :
Hi lindadanis
Lymenet can provide many answers for you. You have to become your own health advocate and research everything you can. I know you are sick, which makes it difficult. We will help anyway we can.
Also, please utilize the "search" function on home page. It is loaded with other members experiences with babesia.
Also, write a list of questions for your LLMD visit. Keep your questions short and to the point. Write down everything, Lyme brains don't remember.
You are new to treatment. It will get worse before its better, unfortunately. You NEED guidance. You should not go this alone. So much to learn, different protocols, supplements, detox, therapies. . . Plus every patient reacts differently, so this is NO one size that fits all.
We are here for you.
Posted by lindadanis (Member # 51204) on :
No I am not new to this as my daughter had lyme and bart many years ago, but then I was a very healthy person who could utilize the computer and retain everything. Unfortunately now that I am sick I cannot do this. I forget everything!!!! I have tried to use the search button and do read other people's post and they are very helpful. I am writing down a list of questions for my lyme doctor who I will see in a few weeks. I am sorry if I keep repeating myself but my mind and memory are a mess right now. So sorry.
I was a very different person back then dealing with my daughter's illness. Now I am alone and sick and it is very scary when your mind is not working like before. Thanks for your help.
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