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coping with not being crazy

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Posted 3/8/2018 1:58 PM (GMT 0)
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?
Posted 3/8/2018 2:09 PM (GMT 0)
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.
Posted 3/8/2018 2:26 PM (GMT 0)
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
Posted 3/8/2018 5:24 PM (GMT 0)
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.
Posted 3/8/2018 6:16 PM (GMT 0)

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...
Posted 3/8/2018 6:20 PM (GMT 0)

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
Posted 3/8/2018 7:32 PM (GMT 0)
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!
Posted 3/8/2018 9:44 PM (GMT 0)
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?
Posted 3/8/2018 9:56 PM (GMT 0)
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.
Posted 3/8/2018 11:30 PM (GMT 0)
Frontal lobe is responsible for lots of things mostly our thoughts, excitutive function, computation, planning, and impulse control. Plus Manny more.
Posted 3/8/2018 11:59 PM (GMT 0)
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.
Posted 3/9/2018 1:17 AM (GMT 0)
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.
Posted 3/9/2018 1:18 AM (GMT 0)
I was tearing up earlier this week and depressed pretty bad. Does anyone herx between 1 and 3 hrs after ingesting herbs?
Posted 3/9/2018 1:20 AM (GMT 0)
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.
Posted 3/9/2018 3:30 PM (GMT 0)

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
Posted 3/9/2018 3:41 PM (GMT 0)
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.
Posted 3/9/2018 3:56 PM (GMT 0)
That's a really good point !
Posted 3/12/2018 4:53 PM (GMT 0)
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.
Posted 3/12/2018 4:58 PM (GMT 0)
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.
Posted 3/13/2018 2:25 AM (GMT 0)
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.
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