coping with not being crazy

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

singbabysing
New Member


Date Joined Mar 2018
Total Posts : 6
   Posted 3/8/2018 8:58 AM (GMT -6)   
Hey everybody, I've been really sick for 6 years and this january found a lyme literate doc who finally gave me an acutal diagnosis (lyme disease and bartonella h and q). my story is a not a new one. When i first fell ill i had tons of tests done and saw a bunch of different specialist who could find nothing wrong and to the psychiatrist i went! even though i drank the "its all in your head" koolaid and believed (really really believed) i was crazy, i thought that something else was wrong too. Eventually got fed up with the bs and found my new doc. i consider my diagnosis a freakin miracle. So now, one of the biggest challenges I'm having is getting out of the "i'm just crazy" mentality. i find myself questioning my pain and if it's real (even though i now know how real it is) and if its the lyme or if im really just nuts. i feel like ive been brainwashed into believing its all in my head. can anyone relate?

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 246
   Posted 3/8/2018 9:09 AM (GMT -6)   
well yeah people (we) have legit ptsd from suffering from a systemic infection while actual doctors keep sending (us) them to psychiatrist...instead of you know, treating the infection,

There are SO many stories like this, the cognitive dissonance is massive. Just keep going with your proper treatment now, and don't focus on what was obviously a needlessly delayed diagnosis even though it's done a great disservice to many of us.

singbabysing
New Member


Date Joined Mar 2018
Total Posts : 6
   Posted 3/8/2018 9:26 AM (GMT -6)   
Yes! Onward! But I think my new mantra will have to be "I'm not crazy" for a while. ...which to some folk might look pretty nuts haha

Runninheid
Regular Member


Date Joined Sep 2017
Total Posts : 52
   Posted 3/8/2018 12:24 PM (GMT -6)   
Your new mantra sounds just right to me!

I have PTSD from thinking "I am crazy" for so long with no justification. I was so convinced that I had gone crazy that I requested to be evaluated by a psychologist and a psychiatrist. They both determined that I was not in fact crazy, but clearly physically ill...the question was, ill with what?

Now that I know what physically plagues me, when I'm feeling yucky and crazy I just say "I'm not crazy, I've been tested" or "It's just the Lyme" or "It's just the bartonella or babesia" etc... Doing this has helped me ease the PTSD. I'm not perfect, but improving.

Wishing you luck with your new mantra...I'm sure it will be of help, and eventually just ease away.
DX Borrelia, Babesia, Bartonella and Ehrlichia June 2017.
Symptoms since at least 2007.
Started treatment June 2017
-Artemisinin, A BART, A BAB, Biaxin, Chlorella, Liposomal Glutathione, Magnesium, Omnicef, Prothrivers Wellbrain, Tindazole, Tranquility, Uplift, Fish Oil, B Vitamins, Vitamin D, gluten free, sugar free, dairy free, lemon water, detox tea, coffee enemas.
30%-60% Healed

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33953
   Posted 3/8/2018 1:16 PM (GMT -6)   
singbabysing said...
Hey everybody, I've been really sick for 6 years and this january found a lyme literate doc who finally gave me an acutal diagnosis (lyme disease and bartonella h and q). my story is a not a new one. When i first fell ill i had tons of tests done and saw a bunch of different specialist who could find nothing wrong and to the psychiatrist i went! even though i drank the "its all in your head" koolaid and believed (really really believed) i was crazy, i thought that something else was wrong too. Eventually got fed up with the bs and found my new doc. i consider my diagnosis a freakin miracle. So now, one of the biggest challenges I'm having is getting out of the "i'm just crazy" mentality. i find myself questioning my pain and if it's real (even though i now know how real it is) and if its the lyme or if im really just nuts. i feel like ive been brainwashed into believing its all in my head. can anyone relate?


Welcome to our community, singbabysing!

i'm sorry it took 6 years for you to get help...but glad you finally did...and happy you found us here.

My symptoms came on fast and furious...literally...I was getting new symptoms weekly.
At one point, I was reading about Somatoform disorder...and thought I was doomed. But, it wasn't from the Dr.'s telling me I was crazy - it was me thinking I must be...because I couldn't find a disease that matched everything I had going on.



I'm quite sure I have PTSD from those early days...
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33953
   Posted 3/8/2018 1:20 PM (GMT -6)   
singbabysing said...
Yes! Onward! But I think my new mantra will have to be "I'm not crazy" for a while. ...which to some folk might look pretty nuts haha


We're not crazy , we're just a little unwell.


/www.youtube.com/watch?v=WziA88-n02k
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Maru
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/8/2018 2:32 PM (GMT -6)   
Sorry to hear some of you might have PTSD from being told "it's all in your head" for so long.

I had the same told to me as well. I have severe muscle tremors that look like a seizure and was told I was causing it emotionally because I'm probably depressed and don't know it. I also went to a psychologist for an interview and he said my emotional affect was normal and I'm not depressed. The neurologists didn't believe the psychologist because they couldn't find a cause for tremors and said all psychologists might as well have an arts degree.

So much for respect internally in the medical community as well as externally to patients.

Turns out I had a Bartonella infection. But, I did question myself for a long time. My arm or leg would shake for up to 6 hours straight and I would stare at it and try to will myself to stop (on the chance it really was psychosomatic). It took over a year of treatment for me to stop feeling like there's a chance I am crazy.

singbabysing - What you feel is real and valid. What you experience is real and valid. You are not crazy, and you are not alone!
Borrelia, Bartonella, maybe mycoplasma. Babesia gone. Started treatment Nov 2016

“It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living.” - F. Scott Fitzgerald

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 3/8/2018 4:27 PM (GMT -6)   
It truly makes me sick how the medical community has failed so many of us.

My Kid#1 was severely sick with many severe "life-long" diagnosis. There were many doctors/medical practitioners who failed to help us (in both mainstream and alternative medicines). He has been well now for over a year, and all of those "life-long diagnosis that are not curable" have all been dropped.

Unfortunately, our mental health system is severely flawed. I truly wish and hope some day that it will become more integrative with physical health. We need to stop separating physical and mental health, as they are both very interrelated!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 156
   Posted 3/8/2018 4:44 PM (GMT -6)   
Yes, Dr.s are not problem solvers at all! Main stream ones any how. I was going through the whole you need a SSRI and stress is causing the nueropathy and twitching. All while I had the feeling of dementia followed by psycho symptoms such as impulse control, ocd, irritated,mood swings, and depression. The OCD has improved alot still a little left. Currently have been dealing with depression and feeling as if my frontal lobe is not working. I think this is a new herx. Did anyone else experience depression and frontal lobe numbenes during a herx?

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 3/8/2018 4:56 PM (GMT -6)   
Woodduck,

I'm curious about the frontal lobe symptoms. How can you tell the symptoms are in the frontal lobe? Can you tell by where you feel it in your head, or are you relating it to the brain functions that the frontal lobe is believed to do? I know nothing about the brain or neurology. That's why I'm asking.

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 156
   Posted 3/8/2018 6:30 PM (GMT -6)   
Frontal lobe is responsible for lots of things mostly our thoughts, excitutive function, computation, planning, and impulse control. Plus Manny more.

Maru
New Member


Date Joined Mar 2018
Total Posts : 8
   Posted 3/8/2018 6:59 PM (GMT -6)   
Woodduck12 - When you say frontal lobe numbness, do you mean that you have a numb feeling in the front of your head? Or numb emotional feeling/dissociation feeling?

My mood swings, tearfulness, impulse control, depression, random rage or anxiety, and pressure in the front of my head have all gotten worse during a herx. So I believe it's possible. I feel a distinct difference in mood and thought processes when not herxing.
Borrelia, Bartonella, Mitochondrial Dysfunction, maybe Mycoplasma. Babesia gone. Started treatment Nov 2016

“It was only a sunny smile, and little it cost in the giving, but like morning light it scattered the night and made the day worth living.” - F. Scott Fitzgerald

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 156
   Posted 3/8/2018 8:17 PM (GMT -6)   
Yes, I feel like I have sludge sitting on the front part of my brain and yes when I herx. It does feel like these things come out more pernounced. I had about 12 days after a doozy of a mental her where I felt probably 95 percent. I think that her I cleared alot of crap out of my head. I'm doing buhner Bart protocol. I can't get to a llmd till June. I really think it's harder to get toxins out such as dead pathogens and amonia. I think amonia plays a big role. Other members stress detoxing and they aren't kidding. When I get back to 100 this will go down as one the hardest things ever for me in life.

Woodduck12
Regular Member


Date Joined Dec 2017
Total Posts : 156
   Posted 3/8/2018 8:18 PM (GMT -6)   
I was tearing up earlier this week and depressed pretty bad. Does anyone herx between 1 and 3 hrs after ingesting herbs?

BabsBunny
Veteran Member


Date Joined Mar 2017
Total Posts : 563
   Posted 3/8/2018 8:20 PM (GMT -6)   
This podcast was just posted recently and I was in tears with relief at how well they relate the mental issues.

http://abc27.com/2018/03/06/how-lyme-disease-affects-your-brain/

I know its Lyme but still think I'm just crazy sometimes, because so few people understand it, and when they see that I look fine but am on 25 medications, they say I need to see a "real" doctor and get tests done, and go off all this snake oil. I dig up my positive tests and my Babesia blood smear to bring myself back to reality.
Lyme, Babesia, Bartonella. Symptoms began 5/2016, didn't start treatment until 9/2016. Slow but steady recovery.

*twitch twitch*

WalkingbyFaith
Veteran Member


Date Joined Aug 2017
Total Posts : 2040
   Posted 3/9/2018 10:30 AM (GMT -6)   
Woodduck12 said...
I was tearing up earlier this week and depressed pretty bad. Does anyone herx between 1 and 3 hrs after ingesting herbs?


Yes

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 3/9/2018 10:33 AM (GMT -6)   
Woodduck12 said...
I was tearing up earlier this week and depressed pretty bad. Does anyone herx between 1 and 3 hrs after ingesting herbs?


I've felt reactions to the herbals in as quick as 10 minutes later! That was my quickest reaction.

Not all of the reactions were that quick though!
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

singbabysing
New Member


Date Joined Mar 2018
Total Posts : 6
   Posted 3/9/2018 10:41 AM (GMT -6)   
I am 3 weeks in with my treatment. I don't understand a lot about herxing. I understand why it happens but I don't understand how long it last? Every weird symptom that comes up I just chalk it up to herx.

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2474
   Posted 3/9/2018 10:50 AM (GMT -6)   
I use to call every reaction a herx. But I was confusing flares with herxs. And I think many others commonly refer to their flares as herxs too. Not everything is a herx. Sometimes, it's really difficult to know the difference. sad
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

singbabysing
New Member


Date Joined Mar 2018
Total Posts : 6
   Posted 3/9/2018 10:56 AM (GMT -6)   
That's a really good point !

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 246
   Posted 3/12/2018 11:53 AM (GMT -6)   
For me it's next level depression, obsessive thoughts, focus on negative, almost unable to work at times. Really wish I was part of a world class lab where they could do all sorts of blood and fluid tests for research. But my quality of life is so low that it's difficult to put together the string of thoughts to get me there. I have plenty of "physical" symptoms too, but it's astonishing how few professional folks will look into the infectious basis of a disease and just label it "crazy" and put someone on broad spectrum psych meds because there is little incentive to do otherwise.

Think of the past, of course it was easier to call everyone with Syphilis crazy and just put them in a looney bin.

(sorry not sorry for the dark factual humor about shameful ignorance and the status quo but I digress...borreliosis being syphilis' cousin of sorts)

because, to look any deeper, to paraphrase a famous Syphilis doc "to understand Syphilis is to medically understand every system of the body."

Too much work I guess, and research and reading and *cough money.

And I get it that doctors are overworked already and stressed to the max, but we've got to do better.

singbabysing
New Member


Date Joined Mar 2018
Total Posts : 6
   Posted 3/12/2018 11:58 AM (GMT -6)   
I feel ya. I really really do. The symptom dejur is paralyzing anxiety. I haven't felt this intensity in years. I've been tapping while repeating this too shall pass.


Wondering if I should lower my dose but don't understand if it'll make my recovery longer...

Day 21 of treatment.

borrelioburgdorferii
Regular Member


Date Joined Feb 2017
Total Posts : 246
   Posted 3/12/2018 9:25 PM (GMT -6)   
Well at least you're doing something about it, and attacking it. It's a process, takes a while to heal afterward too. And I say this as I let another ABX window pass, having let my ABX expire because I live in a place where my neuropsychiatric symptoms are not well understood or tolerated. If you can soldier through the higher doses, more power to you but remember to give yourself a chance to heal and rebuild gut flora and nerve health. I'm sure you've heard about: lemon water, NTFactor, glutathione, beet root powder, raw diet, probiotics, etc.
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, August 20, 2018 5:29 PM (GMT -6)
There are a total of 2,994,874 posts in 328,172 threads.
View Active Threads


Who's Online
This forum has 161302 registered members. Please welcome our newest member, BangedUp.
308 Guest(s), 9 Registered Member(s) are currently online.  Details
sharpcut, Cmburks, RandyJoe, BBN!!, Hummingbird22, Saipan Paradise, kit49, bubbatc, borborygmi