Reasonable Timeline

Could you help me out with some reasonable expectations? I suppose it brings me comfort to know what most people's outcomes have been through time with their treatment. Obviously, if you're lucky, you don't have nay symptoms ever and can simply take a couple weeks of antibiotics and you're fine, but obviously that isn't the case for what seems like most people. So how about you? How about others who are on here (or who have been on here) and healed?

I often think that I'm going to be stuck on treatment for 10 years or something or that I will never get better. I am normally not a negative person, but being that I have been sick for so many years, fears are living at the surface of my mind. I'm pushing myself to get started though.

I just want scenarios. My girlfriend even says, "descriptions are helpful for you." It does help me to have my questions answered and just hear different stories and such. I wonder if there's the chance that even though I have been sick for some time and I am sensitive if just some months could do it for me, I don't know. But it's nice to have information. The more I read up, the more likely I am to go through with something, even if it's hard. I guess that's because I have these mental landmarks for myself. Besides this, anything that will bring comfort would be nice. I feel like most things in life are so dark and cold, but I try to dissect as much as I can. What helps you?

Please feel free to answer whatever you can. It would be greatly appreciated.

I often wish I had found out about this sooner. I worry that because I was negative for many years that I will be harder to treat. Then again, they say that the younger you are, the more likely you are to bounce back? But I don't know. Yes, obviously that is true to some degree, but my symptoms are crazy. I really hope that treatment will start to knock down certain things like this incredibly painful dizziness/vertigo that won't let up. I also worry that there's nothing I can do for a herx considering when I do, it just makes me feel worse, but as I have started on other posts, it makes me wonder if that just happened to be due me being so sick already. I don't know. I waited to long I suppose. I just kept landing elsewhere.

But it's really nice to see you got this handled. On a positive note, I am in remission of fatty liver disease (last time I checked), which is quite a common disease these days, but it does go to show that things can heal. I am also working hard to restore my oral health. I am either at gingivitis or periodontal disease, but they're looking better.

With that said, thank you for letting me know. I really do appreciate hearing this stuff and am always looking to hear more about it considering that even if I am "book smart" when it comes to Lyme/Mycotoxins/MCAS, I don't feel I have the personal experience when it comes to treatment, sort of like a doctor. They get out in the field, don't know how an illness feels, but they go through their computer and say this is the answer, trust me!

I treated for years with various antibiotics that ultimately didn't work. I had some improvement at times, but it would just come back.

When I finally did find a combination of antibiotics that was successful for treating bartonella, it took around 9 to 12 months to eliminate it. I had some pretty intense herxing for the first few months, then seemed to have remission for a while but would have occasional relapses that I would have to re-treat. Eventually the relapses stopped, but it took close to a year, and I wasn't entirely sure when it was completely gone.

Borrelia has been even more difficult. I tried more than a dozen different antibiotics, and most didn't work. I finally found some that seems to be effective. I have been at it for over a year, and there has been some improvement but I am still herxing. The herx is pretty intense, makes me very tired, and I pee out a lot of crud that smells bad.

Quin said...
I treated for years with various antibiotics that ultimately didn't work. I had some improvement at times, but it would just come back.

When I finally did find a combination of antibiotics that was successful for treating bartonella, it took around 9 to 12 months to eliminate it. I had some pretty intense herxing for the first few months, then seemed to have remission for a while but would have occasional relapses that I would have to re-treat. Eventually the relapses stopped, but it took close to a year, and I wasn't entirely sure when it was completely gone.

Borrelia has been even more difficult. I tried more than a dozen different antibiotics, and most didn't work. I finally found some that seems to be effective. I have been at it for over a year, and there has been some improvement but I am still herxing. The herx is pretty intense, makes me very tired, and I pee out a lot of crud that smells bad.

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You're telling me, I eat asparagus almost daily! (for real though lol)

This seems to be the cade for some. I wonder how common this is though? Do you consider yourself more of a difficult case? I ask because I see a lot of people on this forum that seem to come and go, and obviously the timeline for that is long and tough, although I would help you started to see improvements through the months. I guess I should know this but I suppose I was worse a couple of years back and didn't ask some of these questions that I am asking now.

I was negative for lyme and bart, but only positive for babesia based on IGenX testing. If I have one, I do often think I have the others, especially considering my massive symptoms set. These days though, my major symptoms are:

1. Dizziness/vertigo (MdDS)
2. Anxiety/panic (less panic than before but it can hit hard at times)
3. Headaches/migraines
4. Sinus pressure
5. Nerve numbness/Tingling (sometime pain)
6. Teeth pain (although I just had 3 teeth extracted so I will update in the future)
7. Pain all over, joints, etc.
8. Confusion and memory loss
9. Tinnitus (never stops)
10. Sensitivity to nearly everything

That's mostly the stuff that is persistent without a break, some things are not always as bad like now it's constant anxiety over panic, thankfully. My heart used to race constantly for months on end, not any longer though.

Due to how a lot of the lyme/co-infection symptoms overlap, I feel it's nearly impossible to know each one for sure, hence why I suppose reevaluating after a treatment runs it's course isn't a bad idea.

So you're not in remission but still highly functional? That must be nice! I am happy to hear that. It reminds me of how I felt between 2011-2016. I mean, I wouldn't say I was fully functional through all of that times, I was bedridden for various days, but these days I am bedridden every single day. Like many, I used to think Lyme might just be a pain disorder all because of the way people talked about it and how I knew a bunch of people with it and all they ever complained of was pain and some anxiety, but they were functional. For me, I literally cannot move at times and feel truly crippled. Like, the anxiety can get so bad that it feels like my body is going to explode and it's just something I don't like thinking about. Lots of times I thought I was legitimately going truly insane. But I am glad to hear that worked for you. That stuff never actually worked for me alone, unfortunately, but they are a huge thing that are very important, particularly sleep, diet, and exercise (in that order). I think in my case I will need antibiotics or something along those lines though. It does make me feel good knowing there are people that have seen results from Eastern treatments such as acupuncture though!

I am aware that everyone has different timelines. I mean, I've been through this kind of thing before. But to hear different stories, it can be helpful for me. That's why I appreciate hearing everything you all have to say.

I mean, what's confusing is knowing if what I had was Lyme/co-infections at 3 years out. It would make sense that I have been untreated since circa 2008 when I kept getting infections and having issues, or 2011. I am not sure, I was young. We don't care when we're young. We like to be outside and screw around in the woods, you know? But for me, I woke up not being able to move and having MS symptoms. My heart was going 150 BPM for 1 year straight, no breaks. Apparently this can happen to some? That and mold. But I have been told my doctors I am certainly not a mild case from what they've seen.

With that said, when I hear others stories, both quick and long, easy and hard, it helps me develop understanding. The things that you mention sound a lot like me as well. Stress can certainly set off a lot in the body. I am not sure what autoimmune disease I have but it's likely MS, by the looks of it. But reality is it may not even be that. Lots of names for all of this stuff, but it's just a name. Looking at symptoms and getting rid of the problem underneath usually helps most, but obviously in our case it's a bit more complicated than that. I just wish I would see more of a variety of cases. It can't be that we all take 5+ years to heal, but it's not realistic to think everyone will get better in a few weeks if they've had it for years either. With the last illness I had (or thought I had) the common timeline was all over, but it seemed 18 months was the average.

Lastly, I am sorry to hear about all of the complicated matters with your illness. Again, it really sounds like me. I don't even talk bout the 20+ other things I am diagnosed with anymore because chances are it was all Lyme/co-infections in the first place. I guess time will tell a better picture.

What does Sweets syndrome look like? I got a rash when I hit borrelia with valtrex, but only in certain spots. Over about 6 months the rash has gotten less, and is now only in one area.

Forest - You make a good point about responses and how they are taken. Sometimes it is forgotten our minds are not in “normal” mode with all the neurological involvement. Your point is a good one.

There is one member on here who, at times, would seem illogical with responses and very defensive. Very combative. Eventually that person mention getting on an SSRI, and you could tell the difference by the more relaxed responses.

I’ve never found your responses negative, at least in my experiences with you. And sorry all you’re going through. But honest answers and emotionless are two different things. I like honest answers as we all looking for a possible way through the Lyme crap.

Rarely do I get it from doctors.

running wild - I sometimes feel like I am dying why everyone else is thinking, other times I feel like no one else is thinking what I'm thinking, so I often feel the need to say it, otherwise I am left wondering. I do appreciate that you don't think my responses are negative, I really do try to be a positive and upbeat person as much as I can. Really, I have never found purpose in bringing others down (except for when I was a child, but then learned that it wasn't the way!)

I do often worry about people getting on medications such as SSRIs, all because they might help, but they always create a bigger problem later. I have heard of many using twos to cope and then having a hellish time coming off of them. I suppose if it's a necessity then so be it, but I see a lot of "before and afters" as I am part of the whole circle, or I've been there. Sometimes I feel like ended up on the "end" where I should have started here. Life is weird like that. I can't help but worry about others, but I know I need to worry about myself. But then again, I think about how much I need people right now, so that isn't completely fair.

By 'rarely do I get it from doctors" are you referring to honest answers, positive answers, or just answers in general? I know it can be really tough navigating this stuff. I keep looking for hope myself because sometimes it feels like they're just there with their bias methods and we are all different. But you'd think they see certain types and say "okay, for you it seems we need to do XYZ after we ABC and then LMNOP" etc. you know? Even some of these types of doctors use a strict protocol which can be problematic to certain kinds of patients who need somewhat more of a loose fitting protocol.

I'm so sorry Forest, and you have a right to vent and if this forum provides a place for you to release then that's a good thing. This. is a group that understand all the interlayered symptoms that don't make sense but just are. We get it. I'm sorry you are worse now than in 2018, has there been a big stressor? Has it been since the dental work? Also antibiotics always made me feel depressed and they bring out other bacteria so you herx. Perhaps when the course is over you will feel better. That is my wish for you. I can hear through your words that you are strong of mind and that really is important.

From what I read on other posts, I can't seem to figure out if it's 8 months or 8 years that I will be in this. I am completely aware that it's different for everyone, I suppose I am asking as far as the "common" timeframe. I know os some that get bit and get better within a few weeks, but I know that isn't realistic for everyone. I have been in this for an unknown number of years myself, because of the reoccurring illnesses I have had. It's confusing, so that is why I am asking everyone these questions. From what I gather a lot of people will get on antibiotics or herbs and then generally after some time, they feel better, then get on maintenance, is that correct? Then there's some that have a hard time finding ones that actually work and it becomes tough, but from what I gather this is more rare, I think? I have not had anything until now that is used to kill off bacteria, so it's like I am starting fresh.

I guess my question is: what are the differences for people? Do a lot of newbies come in here and then feel better quick and then leave? Excuse my brain, the urge to know these things actually helps me.

I had Lyme and Bart (PCR positive for both) and both were resistant to multiple antibiotics. With a few exceptions, most of the antibiotics didn't work, or had side effects that I couldn't tolerate. I tried more than a dozen drugs over several years before I figured out what worked, and it took different drugs to kill bartonella than to kill borrelia.

Once I did figure out what worked, the limiting factor was the herx. The herxes just wiped me out. I would do a round of antibiotics and sometimes barely get out of bed for weeks. This has been going on for close to two years. Most of the time I just slept. Recently I have had some good days where I can get up and do something even after taking antibiotics, so that's an improvement.

But this is a technical thing. I got sick nd healed (without meds, except benzos) from October 2011-May/June 2012 then again for a few months in 2014 or 2015 (can't remember), then thought it was benzo withdrawal because I felt like I was literally losing my mind from November 2017 to January 2019 (this one time I used Doxy for 1 week though and eventually got better) but this was because I was told it was benzo withdrawal, which you cannot use supplements to get better, or you will get worse and not heal (based on prof. Heather Ashton). The info about benzo wd and lyme is so interesting because they both are almost alike in every way in regards to symptoms but also the way they present (comes back years later even without use of the drugs they use, etc.) but the treatment is completely the opposite (no drugs vs the need of drugs). I think if both this forum and the benzo buddies forum were to collide, that would be truly be something. I think it was cause a lot of people to scratch their heads and question things. Both present with years of illness and lack of answers, bad testing, etc.

Takes benzo for 2 weeks = 2 years of withdraw (yes, seriously, happens more than you'd think)
Gets bit by a tick and treats years later = 2 years of treatment due to chronic lyme

Symptoms: All of them (lol, but seriously)

Get what I'm saying? Then there's other things in the mix that both works have going on too, like mycotoxins and lyme. It really comes down to things screwing with the body at the end of the day. Makes me feel like a crazy person when this is sadly such a logical statement. It all looks like quackery to many, but it's not because there's cases from both in the literature. I feel like a nutcase so often and I believe this is part of the reason I want to know more, because it's what has helped me in my own journey to truly figure things out. If I take some of these things they could give me a "setback" in the benzo world. If I go without, my lyme/co-infections only get worse. But then again, people can get worse with both. I think this has to be one of the most confusing things to ever cross my mind. Both are dangerous. Both cross into each other. Unfortunately, both worlds don't actually know about each other so well though. When I talk to benzo people they say they would never take antibiotics, ever. This is because they know the damage they do and how they ramp the CNS up for many months. Then the same for lyme, they will willingly take some of these drugs willingly even though it could potentially be making them worse due to something else, not the infection (because testing isn't always accurate, and if we treat the symptoms, we may be crossing into something else... like benzos or SSRI withdrawal, which all present with the same symptoms EVEN if you are still on the same dose as weeks ago). Who else wouldn't feel crazy after this? It's not like it's easy to figure out. I have tried to figure it out. The best way for me to feel more sure is to try testing more which I plan to do and to go with my gut feeling.

I honestly feel like whoever is reading this will try to come up with something to combat my logic but in my opinion, I think I hit the head the nail on the head with this for a certain number of people. But one side has to prove itself as the reason for why I am sick. DID I actually have WD? Or did I actually get bit. Then the way I got better makes it even more confusing. I did get better but it was with time and no meds, until I got pneumonia and Took 1 week of doxycycline. This COULD potentially have killed off enough for my symptoms subside for some time, so long as my immune system and CNS system were holding up. It wasn't an instant recovery, but between good eating and getting outside, I felt better as the months went. Now I have some similar symptoms, same neurological issues, but different at the same time. So for me, it's maddening.

This is part of the reason I feel so crazy though. Excuse my rant, I needed to say this. Who knows, maybe someone else will be caught in the same predicament as I am here. But I am taking antibiotics right now, but they are on the "safe" list, so long as it's not anything like quinine or fluoroquinolones. But there's others in the mix I am supposed to avoid for many years afterwards too, such as oregano oil. There's many things here that have me twisted up.

And what are LLMDs gonna say, that it's quackery? Because the other side might say the same thing. Both are in the literature too though. It's really such a mess.