Disbelief

[cave76]

In another thread rico said:
"I had to go through a process of disbelief before I got myself to an LLMD. I just couldn't comprehend how so many "good" doctors could be so wrong about Lyme Disease."

I think that deserves a thread of it's own. The 'disbelief' of friends and family we're all used to (but shouldn't have to be) but because I've been science-minded and from Missouri (the Show Me State) I put off taking abx because 'how could all these symptoms belong to one teeny tiny bacteria?

Now, remember, that was way back in the day before the Internet supplied us with so much information---- even though there's also so much mis- and dis- information about it.

Fortunately I knew just enough about Lyme (from a patient of mine who had  it---- I was a Dental Hygienist) to suspect it. She put me in touch with two women who talked and talked and talked me through it. I stayed suspicious but gradually the penny dropped! (That was before email was common---- and I lived on a very remote ranch with no Internet connectivity at that time.) My telephone bill was enormous.

Then came the long search for a doctor who 'believed' in Lyme. :( The only one that did, in my county, wasn't taking new patients because he was so over-loaded with patients. :(

Have others gone through that 'disbelief'?

[cave76]

Rico---- I'm glad that your husband and mother finally 'got it'. That certainly helps a lot, emotionally.

You mentioned ageing. Have to tell what one doctor said to me. She said 'When we start getting older, all sorts of aches and pains happen" ARGHHHH!

If I could have gotten out of my wheelchair and lifted it I would have done some serious damage to that viper!

Since my disease was sudden onset (I mean overnight!!!) and not the accumulation of several months/years that some people have------ I retorted "Can someone "age" overnight???? She stayed mute. And I left, in my wheelchair.

The day before I 'collapsed' I was saddling up one of my horses for a long ride; I gardened; I cooked dinner; was having 'fun'.

[Ricobord]

My husband went back and forth between believing me and not being sure. He was very supportive of ordering IGeneX testing and going to the LLMD, though, which was a necessary step for me to get diagnosed and start treatment.

Where he really struggled to understand was during treatment. After I'd have a good day or two, he thought I was lazy when I spent the next day in the recliner. Neither of us realized that it would be such an up and down process, nor did we realize how slow and how long the treatment process would be.

When I started treating Babesia, he had some doubts that I had it. I showed him Schaller's symptom list and he acknowledged that I had most of them.  He is an engineer, a very fact-based guy, and has trouble grasping that I could have an infection that could hide for years, not show up on three different lab tests, and make me so much sicker AFTER I started taking meds for it. It does sound like a science fiction movie!  He's a believer now, especially after I gave him some examples of experiences described here of ER trips with life threatening symptoms.

When I was declining rapidly with Lyme and Bartonella, my mother, a retired nurse, kept comparing my symptoms to hers, not realizing that they're really abnormal for someone my age. Her health wasn't very good at the time, and she had low energy, asthma, hypertension, and ended up in the hospital with multiple PEs shortly before my own admission to the hospital for severe abdominal and rib pain.  

I kept telling her that something was really wrong with me, but she just didn't understand. Shortly before my MRI results came in, she made some comment about how the doctors will probably find that my symptoms were just "normal aging."  I was stunned.  She lives a long drive away, so she hadn't seen me to appreciate how haggard I looked and how little I could do.  She thought I sounded reasonable on the phone, so how sick could I be?  

Everything changed when I told her about my brain lesions and that I might have MS. Nothing like some hard evidence to change someone's mind. After my hospitalization and the rude treatment by the doctors there, she was very supportive of me, and was also stunned to realize the "really good docs" weren't going to help me, not even the docs at the nearby prestigious university hospital where I was referred.  

Now, she's very supportive and tells her friends about my experience. She's passed on my and my LLMD's contact information to at least a couple friends with family members who sound like they have Lyme.

Some people are capable of great denial, especially if acknowledging the illness will require a pardigm shift in how someone views medical professionals, not to mention requiring a long and costly treatment. It isn't fair, but it's not uncommon.  

[IndigoRiley]

YES ive especially been going through the "disbelief" phase this last couple wks! It's straight NUTS how HARD it is to get treatment or taken seriously! I have cried bc of this sooo often most recently bc of this! It saddens &i disgusts me!