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Posted 10/14/2021 7:10 AM (GMT 0)
I have been reading so many of these posts here. I just found out I have this and of course, I have yet to be treated, but do we get better? Maybe it's just because I am in bad shape, but am I always going to be like this?

And why is it that I feel like I am hexing pretty much most all of the time, without doing a thing? One tiny thing goes into my body, and bam hit with extreme anxiety, vertigo, tinnitus, etc. So what is the deal? Am I going to have to keep going through this and keep taking antibiotics and herbs? I am really lost with this stuff. Or is it that some just have a harder time?

I guess I just have lots of questions. I really don't get it. And also, when can I expect my Babesia to go away? I have heard it can be anywhere from a month to 6 months. I am hoping I see some good results soon, I don't know how much more of this I can take. Way too many symptoms without treatment. I am afraid to know what it's like with my symptoms getting worse. I... just don't see how that is possible with how bad I feel. Besides detox, how do you do it?
Posted 10/14/2021 1:56 PM (GMT 0)
Your body is in a highly reactive state. That makes it very hard to start treatment that involves ingesting things. I very much identify with this! I have seen a great deal of improvement from that state. It's difficult, but please do not feel discouraged. You ask if some people just have a harder time, and the answer is an emphatic yes! We all have different things going on, different levels of stress and toxicity, different infections and genes. But even dire cases can reach remission if they keep trying - baby steps, trying new things, staying patient.

The turning point came for me when I read Neil Nathan's book Toxic. His patients are the highly sensitive ones who can't tolerate treatments that others can, and I felt like I finally was reading descriptions of patients I could relate to. (People on Lyme forums would talk about their five-antibiotic drug combinations and how they couldn't go as fast on their five-mile trail runs, and I would think, "OMG I must be a hopeless case! I can't take basic supplements or walk farther than my bathroom!") Nathan's patients have severe MCAS, MCS, CIRS, and lots of other complications that make their Lyme treatment a distant concern, as their bodies (like mine) were not stable enough for treatment yet. They were too reactive. The book provided me with a road map and an answer to my years-old question: "Where do I start?" I quickly stabilized and reached about 85% of my pre-Lyme state, reliably.* I recommend this book to anyone who is very reactive and sensitive.

I don't think you should expect to see your Babesia symptoms resolve in the timeframe you mentioned. It can take many months, or even a year or more. That said, you may find that when your body is in a less reactive state, your Babesia symptoms are less severe and more tolerable.

*I say that I reached 85% reliably, which was true for about two years until I encountered some ongoing stress and didn't (couldn't) look after myself properly for a while. Now I have IBS and shingles, and I have no idea what my immune system will be up to when the shingles passes! But I know how to get better again, if I can find the time to do what I did before! MCAS treatment is important for me, but limbic system retraining really was the biggest help.
Posted 10/14/2021 4:07 PM (GMT 0)
knowledge is the the best power from this insidious disease. buckle up put big person pants on cash out 401k and prepare for a long and arduous journey. people do get better! order of operations and finacial fortitude and physical constitution all determine speed of treatment . they say for every year sick equates to 1 month of hd treatment. so in my case it was only 30+months to get operational again.

i have had to learn medical and pharmaceutical jargon equivalent to a np , become my own microscopist , learn japonese accupucture and apitherapy, skills at herbal decotions and tcm, self kinesiology +much much more just to stay ahead of the game . trouble is the stakes are your literal wellbeing and life. chin up , good luck keep us posted.
Posted 10/14/2021 4:32 PM (GMT 0)
I'm 8 years in and work pretty well but still have days where I struggle some. I believe it’s a constant work on improving different things around health + treating what you have in a well-planned way. Routines and planning are huge for improving things around diet, sleep, stress, mindfulness, etc that I think is very very important to improve in. I believe that most people treat too much and spend so much time herxing, where they should step down a bit in taking things that kill, do a lot of detox like Epsom baths and IR sauna, and work on improving other things instead.
Posted 10/14/2021 5:41 PM (GMT 0)
saraeli - That is me, 100%. That is why I have been scratching my head. I believe I am in a much worse state than many others and when this started, on no supplements, I was in 24/7 hell with my heart going crazy, I couldn't do anything, etc. The same is still happening on some new supplements. It's been 5 months. Of course, i haveen't tried to treat this, but my doc is urging me to try to treat this and, I don't know... Just seems like... how am I gonna even do that? I am so bad now, won't that drive me literally insane?

I wake up and within 30 seconds my heart starts to pound to the extreme. I shake internally, Everything hurts. I start to feel possessed. I will have my eyes closed but feel like the bed is moving. This is when I just wake up and happens until I go to sleep. Now, is this normal? Does this mean I NEED to treat this soon? Will it get worse or is it possible to take what I need and actually get some relief from that? All of these things I wonder and when people tell me to try, I think, "I have done this before and last time I had done anything like that, I felt like I was gonna die." And here we are now to where I feel that feeling all of the time, so I don't even know if there's a level greater than this. Oh and I have heard of that book, I had it in my cart last night lol. I plan on buying it today. I would love to hear what stuck out to you in that book, I am all ears!

Also - would it be okay to email you? I feel like it's extremely hard to find other's as sensitive as me. I have been looking for more support.

I actually would love to talk on the phone with some people as well. I know that others are struggling, but again, I am extremely sensitive. Support and good advice is crucial right now if I am to survive this. I am so used to helping others but this once, I would love the return. Especially since I don't really have family or friends supporting me.


bluelyme - I am actually in medical school currently. I am unable to further training so that is going to be on hold for a bit. What you are saying does worry me because I personally can't continue at the level of sick I am. Is it maybe just because I have yet to be treated? Did you or anyone here feel a lot of the anxiety and the severe symptoms fade when you chopped the head off of these guys in the beginning? Although harder to kill than some others, I have heard that sometimes you can feel a difference in a couple of months when you treat Babesia, according to some. Then some others say it's longer. I know we are all different, but I hear the standard from many Lyme docs is 4-5 months, which is one life cycle of the Babesia.

Believe me, I have already been doing my best to learn, but I also feel as though I am getting far too sick and tired to keep ingesting more. I just took my detox supplement and within minutes, all of my symptoms hit harder. It's like nothing I do does anything to aid me in feeling better. I do it though because my doc wants me on it. Because I need to drag this crap out of me and with the mold, this will help I suppose. I have thought it may be smart to also rotate my detox supplements as well. That way it can better bind to things inside of me. One for the gliotoxins, etc.


Deep_sleep - That must feel great to have made that much progress. I feel like an idiot because I have had this for 13 years without ever tkaing anything for it. Now I am just finding that I have this and I guess my immune system/central nervous system just tapped out. The thing that I don't get is I am quite helathy. With respect to those who also try, I go above and beyond what most do. I eat pristinely well. Absolutely no mistakes. I juice regularly. I focus on making sure to have as much order in my lfie as possible, even if my life is being in bed, trying to watch tv and do everything I can to get to the bathroom and make a quick dish.

Now, while I agree with this, how about people like me who take detox supplements and feel worse? What if everything I do I am sensitive to? What do very sick people like me do, the ones that try that and it causes them to be on edge of panic all of the time?

And to anyone and everyone? Has anyone done this with drugs that help with anxiety, etc. I have been tlaking to my doctors about being back on a benzo as needed, because my body is stuck in fight-or-flight mode all of the time. I know that mold and Babesia can both really mess with everything. Brain inflammation, then HPA issues and all of that cycle keeps hitting hard, etc.

I have so many questions. I am sick of making mistakes. I have been treating the wrong thing for years. It's time that I get this right.
Posted 10/14/2021 6:27 PM (GMT 0)

Forest said...
I have been reading so many of these posts here. I just found out I have this and of course, I have yet to be treated, but do we get better? Maybe it's just because I am in bad shape, but am I always going to be like this?

And why is it that I feel like I am hexing pretty much most all of the time, without doing a thing? One tiny thing goes into my body, and bam hit with extreme anxiety, vertigo, tinnitus, etc. So what is the deal? Am I going to have to keep going through this and keep taking antibiotics and herbs? I am really lost with this stuff. Or is it that some just have a harder time?

I guess I just have lots of questions. I really don't get it. And also, when can I expect my Babesia to go away? I have heard it can be anywhere from a month to 6 months. I am hoping I see some good results soon, I don't know how much more of this I can take. Way too many symptoms without treatment. I am afraid to know what it's like with my symptoms getting worse. I... just don't see how that is possible with how bad I feel. Besides detox, how do you do it?

Yes, people can and do get better - BUT it’s not a quick fix.
I was sick for almost 1 1/2 years before starting treatment. I am now back to work - after being off for over 6 years.


If you start herxing - stop the meds until it subsides…
My favorite detox is warm Epsom salt baths.

If you feel like you’re herxing all the time - it’s likely some of those are your regular symptoms.
Before I started treatment - I had debilitating symptoms… I wasn’t herxing.

What are you treating Babesia with?
Mepron with abx was effective for me.
Posted 10/14/2021 6:36 PM (GMT 0)
“ they say for every year sick equates to 1 month of hd treatment. “ (bluelyme posted)

Mine was much longer.

I was sick for approx one year and two months before I was diagnosed and started treatment.
Two months treatment was not even close to get me well.
More like several years of treatment.
Posted 10/14/2021 9:16 PM (GMT 0)
Forest, I think you will absolutely be able to recover. When you first start on treatment, you might feel a little worse but then you are going to feel better.

Anxiety is tricky. I had very bad anxiety ever since I was a child, and it got a lot worse when I had Lyme, but I think as I got better, it was one of the first symptoms to go away. As soon as you get the infection in control, so you body isn't being bombarded by toxins, you probably will start to feel less anxious.

Vertigo is something that a lot of people with babesia experience. It should resolve at some point.

But I really don't know what to say. Maybe taking something else would help your body calm down.
Posted 10/15/2021 1:52 AM (GMT 0)
Yes, we get better. It won’t always be like this.

You feel like you’re herxing constantly without doing a thing because you’re drowning in toxins and you’re in ongoing mold exposure. Mold is one of the top causes of MCAS. MCAS causes extreme hypersensitivity to anything and everything.

Not sure how long babesia treatment takes. Are you going to start with the A-Bab? Are you able to tolerate alcohol based tinctures, or does it cause MCAS reactions for you?
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