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Do we really ever get better?

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Posted 8/17/2019 5:36 PM (GMT 0)
I'm sorry to be a debby downer here but I feel like this will honestly never end. I'm currently on 2 and a half years of treatment. I've done countless antibiotics, many herbs including byron white formulas, UVLRx treatments, rife treatments and yet here I am feeling like crap every day. I feel like I have made progress over the years because I have had some bad symptoms let up. But i have had some other symptoms come back. As soon as I have a day without one symptom then another one pops up. I dont live a single day without one or more symptoms. I'm never happy.

I'm a realist. What if this disease has just been ebbing and flowing on it's own this whole time and I'm the idiot that thinks I'm herxing. Honestly I feel like i have no control over anything in my life anymore. I often wonder if I'm doing anything with my treatments or if I'm just giving myself the illusion of control.
Posted 8/17/2019 6:40 PM (GMT 0)
As someone who has been off of antibiotics for awhile to try to wash out, and having eaten poorly yesterday and last night (just a breakfast burrito, flour tortilla and refined flour biscuit, even something like that affects me the next day...). On the days when I can control diet, eating raw and fresh, or keto or paleo I'm more OK. And when I use my sleep apnea machine to breath the night before I can be sorta OK, although feeling the mitochondria-weakened state. With a diminished amount of energy, and still in a somewhat toxic environment, I feel like maybe half the man I used to be, maybe less than that. I can't seem to plan anything (executive functions diminished)...dreamless zombie sleep again when neglecting to use my sleep meds last night.

Wish I had some bright news to counter with, but this disease and co-infections has taken a lot out of me, aand here comes the tinnitus again...feels like certain food makes my body some sort of septic-metabolite machine. I don't feel properly rested right now even though I slept 8-10 hours last night, feel like I could sleep more. Stomach is turning.

Trying to prime for getting a ton of backed-up work to do this month that's been piling up. Maybe I'll fast again until the brain fog clears and see what I can do then. Quality of life less than after congestive heart failure, really it's hard to imagine (per that study) but that sounds about right...sorry I can't cheer you up so I'll just commiserate : /
Posted 8/17/2019 6:49 PM (GMT 0)
I have not tried nearly the variety of treatments you have, but I could have written the rest of your post. Mold is huge for me. Still, I spent years (like 6.5 after getting sick and about 3 before getting sick) feeling my body going wrong and dysfunctional with increasing symptoms and not knowing why, what to do about it, or how to stop it. Now I know at least part of why, but the answers to the other questions still are elusive.
Posted 8/17/2019 7:01 PM (GMT 0)
I think it does get better. Maybe try other things or change doctors? Have your tried nutritional balancing with Dr. L Wilson which includes MANY detox things that are needed during treatment, such as coffee enemas daily, near infrared sauna daily, at least 8 cups of cooked veggies daily containing sulfur etc. I am doing this on top of Buhner protocol for bart. Just started the herbs again after doing the NB program for 3 months and I can tolerate much more with the increased detox. I would recommend something like this.
Posted 8/17/2019 7:04 PM (GMT 0)
Also so sorry for your suffering. I have been sick for approx 5 years. I was well enough to return to work for many months but then the symptoms crept back and didn’t want to take my chances and not get back into herbs. The foot burning was a signal to stop. Since then (3 weeks ago) been resting and in a herx starting the herbs. But like I said I can tolerate them better this time with NB. There are other options don’t give up. We support you 💕💕.
Posted 8/17/2019 7:07 PM (GMT 0)

1000Daisies said...
I believe many on this board that are still struggling have functional issue(s) that they aren't addressing that is a road block to their healing.

This is me. Part of me feels disgusted by the two doctors I have seen -a Functional MD who had CIRS/mold and Lyme herself and a DO who treats tick infections and environmental illness.

I have had NO appropriate testing over 3 years of this journey until a few months ago at my request. I finally had an OAT test done and still don’t understand what it means. My doctor basically just reverberated the data on the results and recommended the supplements named by the lab report. I felt like the doctor probably couldn’t explain any of it the way I needed to understand it even if I asked.

I have had no genetic testing other than the CIRS HLA-DR of which I have the multi susceptible gene and the Lyme gene. I don’t fully understand the repurcussions of those genes either. Supposedly my body doesn’t recognize and remove biotoxins. This makes no sense to me. I assume the gene was only activated at the point that I became sick. Still, much about it doesn’t make sense to me.

I have not had food sensitivity testing done.

I feel like a better doctor would have done more appropriate testing in the beginning to figure out why my detoxification is so impaired, what genetic deficiencies play into it, how to successfully supplement what is missing and get me functioning normally.

I feel like I’m just getting more broken and dysfunctional all the time. Soon I will have no money to do anything much.
Posted 8/17/2019 7:21 PM (GMT 0)
i was one of the ones desperate enough to do bvt . and so glad i choose this modality.its cheap easy and effective. only the truly suffering will even consider it ...but i am back to life mostly and still intermittently treat ....are you using binders like chlorella and charcoal?
Posted 8/17/2019 7:50 PM (GMT 0)
Hi 1000daisies!

May I pm you to talk about your kids treatmentssmile
Posted 8/17/2019 7:58 PM (GMT 0)
I am there with many of the comments posted here. I do know you can get better if you hit the right treatment for all you may have. Went from December of 2014 to June of 2016 feeling about 85%, then heart surgery knocked it all back even worse and I cannot find a way out since then. But I stayed pretty healthy without treatment during that time and did extensive traveling to meets and recruiting, along with long hours working in high-stress college coaching. It confuses me as I am now out of that situation but symptoms and problems keep multiplying.

Back before I got better for those 18-19 months, I didn't seem to have as many issues. Now it's autoimmune, EBV, infections, kidneys. Waiting for a large battery of blood tests to see exactly where all stands. Went back to the LLMD I saw back in 2013, and he is suggesting rife machine, which I am skeptical of, because of kidney issues.

Think as things "layer," it all gets harder to treat, but since I've found a way through before, I keep thinking there has to be a combination of things that will at least get me back to 80% or 85%. Then the doubt hits, along with depression, and hope fades.
Posted 8/17/2019 8:42 PM (GMT 0)
Thanks for the comments everyone. To answer one question about doctors. I am on my 3rd lyme doc. The first one died and I left the second one to try this UVLRX treatments that the third was offering.
I will ask my doc about function issues and testing for these issues. After this long of treatments there has to be a road block preventing my healing. I just wish someone could tell me what my problem is.

I really just dont want to be here anymore- im not even heavily depressed right now (I've def been depressed in the past few weeks) I'm just tiered of trying. I have to go back to work in a week and I cant fathum doing anything mentally taxing because I am a shell of a person. I rather stare at the wall for 8 hours (which I did two weeks ago) than make conversation. Everyone thinks I'm rude or weird but my brain just cant make fluent conversation right now. Ok enough of my rant. I know you guys get it I just dont how much more I can take.
Posted 8/17/2019 8:54 PM (GMT 0)
I was Literally comign on to post this EXACT same thing when I saw your post at the top!!!
My thoughts are that very few do get better yet--- because it is all so new. Only 10 years or so that this tick illness has been such an epidemic- its literally like the plague.
And only 20 years its even been a big thing prior/ And they are barely figuring out how to classify the infecitons and diagnose, much less figure out how to heal them. I am 50/50 on if I will ever get better. Been trying for 7 years sad Trying a new approach so a bit of hope but I think the doctors are still guessing at this point. that is why we are all sick for so long and all on these forums trying to see if anyone else is gettign better. It is all so hard- I assume mine is babesia because of the breahtign stuff- but we mostly dotn know. I think 20 years from now they will have figured it out more but that doesnt help those of us who are sick now.
Is dr Horowitz gettign people better? he used to be the top guy in the field but not sure if he is having success?
Posted 8/17/2019 8:58 PM (GMT 0)
wisco woman what specifically have you done and what symtpoms do oyu still have strongest? I am right there with you- depressed hopefless ( about the breathing mostly) and cant f-ing take it anymore-- had a decenet night last night weirdly symptoms lifted a bit- back strong today. if I get better from curretn treatment I will post about it just 4 days into it so too soon to tell.
All I can say is keep trying and maybe simplify treatments- less is more
Posted 8/17/2019 9:25 PM (GMT 0)
I also feel like they are barely able to catagorize what the ticks give us. I may have babesia and soemoen else may too but it is different symptoms. something may help one person but not another ( but like yuo i think does anythign really ever help anyone???)
Posted 8/17/2019 10:36 PM (GMT 0)
Some people do get better. My belief is a lot of people certainly not all are treating something they don't have and perhaps never had or it was cleared from their system quickly. The tests suck which give people hope for recovery.
Posted 8/17/2019 10:49 PM (GMT 0)
I'm really sorry, it's such an awful thing to feel that way (been there). It did help me to scour the net and read stories of people who got better, people who were brutally ill and yet they eventually found a way. Really helped me psychologically to know it was possible, because there were long periods I didn't know if it actually was possible. Yes, the road is brutal, agonizing, full of wrong turns, but even for many worst cases people are able to significantly improve their quality of life one way or another. The maddening thing is the effort it takes to untangle our situations and find the therapies that will unlock the better quality of life. It's so variable person to person, case to case... and maybe a bit of a break from having to think a lot about it might help, then you can catch your breath and reexamine strategies if you are feeling more up to it (the constant effort of trying to get better is psychologically demanding and can end up burning us out in its own ways).

I also realize a thing I did in a sort of pathological manner. I've been treating for a while, but always had a mental list of like 5 contingency treatment plans in case things didn't work out or stalled with the current regimen. It was a way to feel like I had some control over things (what has often been an uncontrollable health situation/symptoms). But it did help knowing I still had other options to try... I guess it was also a testament to my desperation and deep psychological need to feel some control in what has been an often times confusing, isolating, and frightening journey.
Posted 8/17/2019 10:56 PM (GMT 0)
skinny joe I agreee with oyu about people often treating the worng thing- that is what I worry about since it is so hard to figure out what I (we) do have? and the tests are so inaccurate? so I am taking something now to treat babesia based on symptoms ( breahtign troubles for years since tick bite) bt not even sure what I have- it is all so overwhelming
Posted 8/17/2019 11:48 PM (GMT 0)
Dr. Horowtiz' books are almost word for word about this, called "Why Can't I Get Better?" and the 2nd one I can't remember what it's called, like "How Can I Get Better?"...I haven't read the books but I'm familiar with his MSIDS approach and have seen parts of his lectures.
Posted 8/17/2019 11:56 PM (GMT 0)
is Dr Horowitz getting people better?
Posted 8/18/2019 12:29 AM (GMT 0)
do you own a rife machine or did you have rife treatments from someone else?
Posted 8/18/2019 1:06 AM (GMT 0)
Skinny joe- I agree I feel like I have benefited from certain treatments but not from all. I know my docs have been guessing this whole time. They are going off my symptoms and what they know. Though I'm grateful they ar least attempt to treat me, I'm sick of the guessing games. Every time I start a new treatment I spent hundreds of thousands of dollars and worst yell I get my hopes up.


Sebreg- thanks for the words of encouragement. Having "backups" for treatment has probably kept me going this long. I've just tried so much now that it is def getting to me psychologically. I'm so mentally drained from this. I try looking up success stories when I'm really down. I've actually been reaching out to a lot of people on here through their email. I'm just very affraid im not one of the lucky ones who gets better. Are you doing better? I don't know your story.


Flowergarden- I'm sorry you are feeling as desperate as I am. Seven years scares me half to death. It's almost 3 years for me and I'm physically and mentally/emotionally shot. I have tried a ton of stuff. I have done a ton of antibiotics, herbs, rife machine and UVLRX treatments. Coincidentally breathing has been my longest issue too. I had been off of antibiotics from the end of March untill mid july doing just the UVLRX treatments. At my july appointment my doc asked what my biggest remaining symptoms were. I said breathing/light headedness from standing. I know I am getting air in I just feel out of breath all the time. I also have been getting acne on the neck of all places. Then my doc said I think the breathing issue is from lyme in your brain. So basically the theory is the lyme in my brain is making my CNS wonky thus affecting my breathing.

Anyways he started me on minocycline to try to go after this lyme in the brain. I want to say I herxed. I had to slowly work up to the full dose because I was increadably spacey, light headed, headachey, depressed and just felt high. Now I feel like I have my head back but my body hurts badly. I havnt had this had of muscle pain in a long time. So hence the feeling of desperation. I just can't live a normal day ever.
Posted 8/18/2019 1:22 AM (GMT 0)
wisco woman breathing I believe is babesia. I dont think doing endless antibiotics helps. My new llmd ( after seeing tons) gave me a very simple treatment- I am only 5 days in but I like the idea of it- a good quality cryptolepsis, but the key is one teaspoon three times a day. he said the amounts in the formulas is too small. He said it works well for babesia and to treat it a few months then see what is left. perhaps you could try that? I would love to report back and say I feel better but he said it takes a month to feel a difference and I am only on day 5! But I realize even with ll the treatments I have done I never did a full force cryptolepsis treamtent- I did lots of small amounts of a whole bunch of things all the time. so maybe this will be the thing. I do not think minocycline will help you with breathing as breathing I believe is babesia- and if you have taken lots of antibiotics maybe give yourself a break and try a few months of cryptolepsis? My new llmd is ilads trained. I have only seen him once and so dont know yet but it is worth a try.
Posted 8/18/2019 1:24 AM (GMT 0)
Personally I believe I won't improve greatly by the time I'm "done" treating and have gone through all the antibiotics and herbs I can. I will always struggle with the remaining symptoms that Lyme has just irreversibly caused damage to. It really sucks. I do passively hope that I will die early sad to say. Quality of life will just never be optimal for me and it hasn't been for a long, long time.
Posted 8/18/2019 2:05 AM (GMT 0)
I’m with you on trying to find the road block to healing. Everything ebbs and flows and once I think maybe something is gone it’ll come back months later.

Currently going after parasites, fungal and doing another mold urine test. I have a list like sebreg, on mine are cavitations and disulfiram.
Posted 8/18/2019 2:37 AM (GMT 0)
Flowergarden- I have treated for babesia. It was only hard core targeted at babesia fot probably 4 months but I did at least attempt to address babesia. I did malarone for 4 months and azithromycin added to to that for the last month of malarone. I'm sure some would say its not much but I feel like after 4 months I should have felt better.

Jb1994 I feel the same way. That i will never go back to normal. If I knew I could beat this thing I would be ok but there are no guarantees. I would love to pass away in my sleep because I really dont enjoy life anymore. I'm in too much pain.
Posted 8/18/2019 3:01 AM (GMT 0)
wisco woman it is so hard but dont give up hope. I think treating one thing at a time may be a good way and just reducing what you can- sometimes it is so much we cant bear it- I feel that way too. But then if you clear one thing sometimes it then becomes more bearable. Keep asking questions and learning.
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