Take the mental health diagnosis, it'll be much much cheaper you wont be in financial ruin, you'll be treated better and won't have ppl hounding you that you aren't doing your lyme treatment right, you'll have a better attitude, you won't feel like a burdon to your family.
Staying in Lyme treatment only will bring you down a deep rabbit hole and more problems will arise.
Trust me.
Posted by LSG Scott (Member # 21624) on :
why would you test for Bart and and switch docs recently if you were not gonna treat? sounds like you are digging the rabbit hole
Posted by Mountainsky (Member # 51857) on :
I have symptoms of bipolar and schizophrenia now (human and trauma induced).
Bartonella drugs (abx, herbs, vits and supps) in the past did ZERO.
Posted by LisaK (Member # 41384) on :
if you don't treat you will get worse
I guess you can choose the way you want your life to go, fo sure. me, i'd rather fight and tell all the a**holes to get a brain.
Posted by Mountainsky (Member # 51857) on :
It's just better this way Lisa. Nothing ever worked and I dont want to face more heart break and disappointment, thats all I ever have known. With all the damage I would have to treat for years, possibly decades. I've read too many horror stories on here. It's too late to do alot of things in my life anyway and alot of this may have caused permanent damage.
Posted by Lymetoo (Member # 743) on :
Sky, I had Lyme since childhood. I didn't find out I had it until I was 49 years old.
I treated for 4 years and got well ..as well as a person can get, I suppose.
Now I have MCAS and other goodies, but I live a full life. It can be done.
Never give up.
Posted by S13 (Member # 42830) on :
Dont assume just because you have psych symptoms that it must be bart. Everyone keeps repeating the same thing over and over, and it just isnt true for many people. Trying to treat something that you dont have will just make you feel worse from the treatment.
Posted by Mountainsky (Member # 51857) on :
S13 I could have more than 1 coinfection not just Bart, yes. She only did the Bart panel on me that alone was almost $700. If I could have them all done hell I would but it's not feasible. There are other tests she wanted me to do, another mycotoxin urine and a 3 day stool test. It's alot. I am overwhelmed beyond words and that isn't helping my anxiety. The supplements and herbs alone are getting crazy.
Posted by Mountainsky (Member # 51857) on :
It's just better take the mental health approach. I wasn't getting my life back anyway with Lyme treatment who was I kidding.
Posted by S13 (Member # 42830) on :
Yes, you could have more than 1 coinfection, or you could have none at all. A positive test isnt the end all be all. A positive test without understanding the sensitivity and selectivity of that specific test means nothing. Also even if you were to have some of those coinfections dwelling in your body, is that proof they cause your symptoms? Sadly no... I would say if multiple treatments get you nowhere, than disregard that diagnosis. There must be something else going on. More proof than that you are probably not going to get anyway.
Posted by Mountainsky (Member # 51857) on :
See S13 and this why from the beginning I didn't want to disclose my protocol because already I have people questioning my doc and her treatment. THANKS!!!
During 3.5 hours at my first appt was great I was glowing after and really felt as though I was safe with this new LLMD, and could start turning a corner. I had hope, something a I havent felt in a few years. It took 1 comment from someone in another board to question 1 thing then everything was squashed.
So we don't know now if a positive test result is really a positive or a negative really negative? The rabbit hole that never ends. I've had ppl pull me in all directions for that with more money being thrown away. I can't keep up anymore.
I RATHER GIVE UP INSTEAD. Never thought it would be this bad. There's no such thing as rock bottom for some ppl, only lower.
Congratulations to everyone who got through it and is now leading a normal better life. NEVER WILL BE ME! Alone is better this disease spreads like wildfire esp in personal contact...I don't want to go through this with a significant other or more devastatingly a child. I'm getting more and more mentally and physically taxed. My energy is at a negative 0 now, when I'm not working I'm asleep.
Every part of my life has been critiqued even the small few things that make me happy. Nothing is good enough.
I watch others celebrate milestones and happy times from the side as per ususl as I did yesterday at my bestfriends young son's birthday party.
Posted by Bartenderbonnie (Member # 49177) on :
I wish you had at least one GOOD day to help you realize why all of us fight so hard to get our health and life back!!!
Stay in the battle. Never give up.
Posted by Mountainsky (Member # 51857) on :
I never do anymore Bonnie. When I have a minute or quietness or " hope" or feel good it gets shot down or doesn't last. Very very temporary. That's why treatment isn't worth it anymore. I'm never going to see light at the end of the tunnel. I'm under unbearable chronic stress. I have high BP now and a HR that never goes below 98. It's like trying to put something in a circle shape that's squared, try all you want it's just pointless.
Posted by LisaK (Member # 41384) on :
well, im not giving up. and I just got MRI results saying im having white matter damage that's irreversible.
there's still a chance to stop it from getting worse!
there is always hope until , yes, we give up. I suppose if I were 80 I might be ready to stop it all. but I have no idea becasue I am not 80. I do know that I almost died twice and that do or die thing kicks in and then your body takes over to stay alive. That is what I felt like anyway.
But my grandmother when she was done she said " I have had enough and I am stopping all my meds" and she went to bed. She was almost 93.
Mountainsky, by the sound of your posts it sounds like you are not ready to die yet to me. I am encouraging you to not give up yet!
Posted by Mountainsky (Member # 51857) on :
Lisa noone said anything about dying. I'm just done. If you were me you'd do the same thing trust me. Damage is done.
Posted by bcb1200 (Member # 25745) on :
Sounds like you are in a very dark place. Very sorry to hear. I think most of us on this site have been there before.
I'm sad to read you are giving up. Aren't even willing try to to fight anymore.
There is no right or wrong way to treat. Just find what works for you. Sometimes you will get worse before better.
Some folks follow ILADS/Burrascano type treatments.
It does often take trial and error. And you can waste time on protocols that don't work. But that's how you find the ones that do work.
I did 3+ years of heavy ILADS treament. Goint through 3 top LLMD's before finding "my guy". Relapsed in late 2015 and spent most of 2016 digging my way out. A dark time for sure. But in 2016 I decided to use herbs/energy treatment. It took a while, but by early 2017 I was feeling better and better. Then 2018 even better. 2019 even better than that, 2020, 2021, etc.
Today I'm feeling pretty much "normal" for a late 40s man. Every so often I have something pop up. But I treat with herbs and see an energy person to help determine "what's on top."
Don't give up. Folks sicker than you have gotten well. You can do this!
Posted by hiker53 (Member # 6046) on :
Mountainsky, I found a lot of help through a Brennan energy healer.
This is an advanced type of energy healing and can help body and mind.
I feel like the antibiotics and herbs I took after a late diagnosis of Lyme did not help and it took me many more years to try this healer.
Am I totally well? No, but I am a lot better.
There are so many blessings in each day. Find just one each day and it may make a difference even if only for a short time.
If you feel like your mental health issues are not related to tick borne infections, I still hope you will find a protocol that helps you.
You remain in my prayers.
Posted by Mountainsky (Member # 51857) on :
We'll see Hiker. I'm a mess and at a cross road with this.
Hi bcb, I sent you a few PMs in the past. It says they still haven't been read yet.
[ 04-26-2022, 10:33 AM: Message edited by: Mountainsky ]
Posted by LisaK (Member # 41384) on :
mountainskey, I guess I associate dying with being "done" becasue if I stopped taking supplements I would surely die.
I have platelet clumping disorder now , and a form of EDS. If I "stop everything" I will die sooner than if I keep trying to be better. for me its a no brainer