posted
I had been unknowingly having Bartonella sx for the past 2+ years which sent me running to a neurologist and a psychiatrist....
until, once again, I figured things out for myself.
These sx are resolving with the aggressive anbitiotic treatment that I am taking.
As a courtesy, I kept the neuro appt for yesterday, that I've had for 6 months, even though I didn't really need it.
I wanted to use this appt to inform and educate the dr about the effects of Bartonella thinking that perhaps he may have other patients affected.
I even took my Galaxy Lab report showing the 1:256 titer.
I learned from him the following:
1. Bartonella does NOT cause neurological or psychiatric manifestations.
2. Everyone that sees Dr. S gets diagnosed with Lyme disease. (This was a sweeping generalization towards all LLMD's.)
3. Why is there a specialized lab for just Bartonella (saying with a laugh)? 'That sounds kind of shady' to him.
4. Since I didn't have the typical onset sx of swollen lymph nodes, he was doubtful...
5. Kept suggesting that I see an infectious disease specialist and get my spinal fluid checked.
6. He gave me a printout before coming into the room to see me. It was a one-page generic synopsis of cat-scratch fever outlining symptons like swollen lymph nodes, etc.
I left there mad as a hornet and am still having trouble letting it go.
I feel like stopping payment on my check!!!
I know we've all had these experiences more than once but ya know, it still stings.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
luvmycat, is this joker still alive? And if so, is the charge just attempted murder?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
If that were the solution to these chowder head non-LLMD's, we'd all be in the hoosegow together!
My husband was with me as my wing man and he did keep a lid on his type A, wanting so badly to slap his redneck on.
But we kept things civil.
I need to get into one of my meditation apps and let this go.
But, ironically, Bart has me a semi basket case right now so that's kinda hard to do.
I started A-bart about a week ago and I believe that's stirred some emotional turmoil.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
Yes. I know. First hand. So many times. Let it go. Don't let it screw you up any more
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
This may or may not be your style, but here's what I would do. I'd go into the bedroom. close the door, warn my husband first, turn on the radio or other music, put pillows over my face and yell at this guy big time as long and hard as I needed to. And repeat, if necessary.
I wouldn't be much good at letting it go until after that.
And, yes, I do that whenever necessary, whether the feelings are anger, sadness, pleading for help (to whoever you want to address, real or not).
I learned the hard way, as did you---yeesh! What a bunch of you-know-whats.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
luvmycat
I agree with you. . . It does still sting. And I agree with Rumigirl. When I left my Neuro visit, I got in the car and let loose a slew of expletives that would make a drunken sailor blush. Sheer frustration. So very sick !
Everyone in my immediate circle of family and friends have witnessed my struggles first hand. The pain, ER visits, procedures, doctors, meds, financial ruin, change in my appearance and spirit. They now know chronic Lyme is real.
And my immediate circle expands with every medical professional and procedure I encounter.
I advocate, advocate, advocate. I am not embarrassed nor feel shame. It is not my fault. I am a victim of a tick bite and a broken medical system. I feel very strongly that this human sufferring has to STOP.
I m a team player, all for one, one for all. Wouldn't you like me on your team ? I would hope you would.
I remember that last Neuro visit like it was yesterday.( 1 year ago). I was bent over in unbearable pain, crying, leaning up against a wall and doc walked over to me to wish me good luck. For 10 seconds our eyes met, human to human. I was a pitiful sight. And he walked away.
Forget ? Nope, I don't think so Forgive ? That's a process that I haven't reached yet. Probably because I m still sufferring and struggling daily.
To add insult to injury, I got a peek at my medical file and notes recently from Neuro and it blew my mind. He stated he thought I was voluntarily hyperventilating and recommending breathing in a bag ! This happened during my POTS tilt table exam. I almost passed out ! Absolutely not Lyme due to negative western book (only 3 bands).
So you see, I will not stop spreading awareness until :
New accurate Lyme testing is approved ILADS Mandatory training for ALL medical professionals Insurance coverage for chronic Lyme Legal action against Doc's that cause harm by not treating
I think I'm done. 💚
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
I've always believed the old saying that the pen is mightier than the sword and I do have a gift for writing.
I was thinking of writing the neuro a nice letter about my history.
Also, when I had Lyme I was so enraged at having to see 14 drs in 3 states that I went to the newspaper and got myself on the front page of 2 newspapers.
My phone didn't stop ringing for over a week with people contacting me who were just like us!
I was thinking of enclosing these articles with my letter.
Also, as a parting gift maybe a copy of Dr S's book.
You would think that being a neuro, he'd be interested in what bacteria can do to the pristine environment of the central nervous system.
Of course, regardless of what we tell them, doctors only see a 10-15 minute snapshot of us sitting on the edge of an office table.
And I do not mean this to defend any of them.
My psychiatrist is utterly fascinated with all this.
He has seen the mental decline in me, the psych meds NOT working AND my vast improvement since being on abx.
He is retiring in September but he still wants to see me after he retires.
So, score a point for that one!
Your post sounds a lot like mine. I could literally write a book on all that.
My ace in the hole is my medical cannabis permit. Still waiting for supply though.
I'll be camped out at the dispensary like a shopper on Black Friday. lol.
-------------------- Luvmycat
A mind is like a parachute. It only functions when it's open. Posts: 268 | From Maryland | Registered: Dec 2003
| IP: Logged |
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
My neurologist put in my medical records that my chronic Lyme is resolved.
Does he not understand meaning of chronic?
If it were resolved I certainly wouldn't see him to get meds to control myoclonus as myoclonus would resolve since it started with Lyme.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
luvmycat, I don't know if you can fix STUPID.
I understand why you want to spend more of your precious time and energy to get your message across. I'm the same way.
But stuff like this hurts me to my very soul and that is harmful to me. Me thinks you should take care of you.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
quote:Originally posted by hiker53: My neurologist put in my medical records that my chronic Lyme is resolved.
Does he not understand meaning of chronic?
If it were resolved I certainly wouldn't see him to get meds to control myoclonus as myoclonus would resolve since it started with Lyme.
I hate to say it, but you would be wasting your precious time and energy on this idiot. He surely would just throw it all away. Been there, done that (not in writing, but verbally, and these guys are beyond repair IMO).
Writing in the newspaper, etc. is another story. Or trying to make a difference with legislation, etc. Although, at this point, you need your energy to heal.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic