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»	LymeNet Flash » Questions and Discussion » General Support » Hi my name is Cynthia and I have TBRD

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Topic: Hi my name is Cynthia and I have TBRD

CynBy
Member
Member # 9957

posted

Good morning, it is wonderful to be here, though TBRD is not a thrill. My name is Cynthia, I live in Virginia Beach, Virginia.

I was bitten by something painful on one ankle and then the other ankle, in my office,on September 6, 2005.

I immediately started to develope a rash and edema that continued to spread from both bite sites.

Within 1 hour and 15 minutes of being bit, I was headed towards my GP's office. He told me it was probably bacteria and put me on Z Pak.

As I am in the habit of making short stories long, I will try to be brief.I was fine until September 22, 2005, when I felt really strange, a fact I announced to all and asunder in my work environment.

I decided I should go to the emergency room. However, I was faulty in the notion that I could drive myself to same.

Not thinking it through, I proceeded to drive to the ER, until the numbness and tingling left me no ability to move my extremities.

I figured I best get the car off the road and call an ambulance lest I kill someone.

Terrified, I went through my brain a stored list of symptoms and ailments and deduced that perhaps I was experiencing a stroke.

Crying, somehow I managed to steer my car into a fast food parking and dialed 911, it was busy.

I called the operator and asked that she connect me to emergency rescue services in Va B, she connected me to some kindred lady in North Carolina, (my angel), who managed to call 911 in Va B, and do a three way until the fire department arrived.

I still thank this lady in my prayers every day. Now I had bells palsy symptoms in my face and no feeling throughout my body.

I sat there experiencing great fear and crying steadily, till the nice fire department men came over, then an ambulance showed up and we were off to the ER.

I was discharged several hours later into the care of my daughter just one week into her 17th year.

The only test performed was a CBC and the doc listened to my heart.

I, asked for another opinion, as is my right in these here United States, preferably from a doc with a medical degree and knowledge and suggested a Western Blot be run, as I perhaps had Lyme Disease.

I was tossed out of the hospital, still totally numb from head to foot.

I have had several other similiar ER experiences since that date, (ie seizure, PICC infections), my goal is to stay out of ERs as it is quite plausible that they will kill me there.

As fate would have it, I have extensive knowledge of Lyme Disease, my eldest daughter had it approximately 15 years ago.

My kid's pediatrician always listened to me and he ran the Western Blot, as my friend was a vet and knew about Lyme Disease,

(I took her to the vet after a neuro doc at Yale/New Haven suggested she was faking her symptoms, she asked me in front of this doc if he thought she was making it up, I said yes but he is an *** so lets go shall we. Doc was miffed to say the least).

I made sure doc was apprised of her accurate diagnosis and prognosis, replete with aggressive long range antibiotic treatment once she was cured.

My GP took the Western Blot the next day when I requested it. He is a good man.

Test came back positive for Lyme, I was quite lucky there. We considered antibiotics, and he listens to me too, so all should have been well.

Then I entered the harrowing world of co-infections, of which I knew naught.

I suggested to my GP several weeks later that perhaps I had RMSF, he said it was rare, I said not, but even if it was, that did not mean improbable.

Saw many "specialists", allegedly in infectious disease, but they all told me that 3 weeks of antibiotics were enough.

I was having serious Shania Twain moments as these docs weren't impressing me much.

Only took me 1/3 of a year to find a LLMD, another angel, who ran tests for co-infections.

Yes siree indeedy I had RMSF, HGE/A, HGM, 11 know parasites and one unknown. Plus scurvy, aye aye Captain Bly scurvy has made a resurgence in our era.

This woman has saved my life. She started serious aggressive oral antibiotics as I was hesitant to have a PICC line inserted with the medical community I was living in.

She explained the Hurts (pun intended)/ die off syndrome. Thankfully the 104/105 fevers abated as did the migraine type headaches.

But I went through all the other nasties, the arthric pains, the gastrointestional distress, numbness, tingling, vision losss, memory losses.

Short term mem is pretty much non-existent, but that means I can reread my novels at no additional cost to myself the consumer.

We agreed to 3 months oral, then we would go to intravenous. I was hesitant to install a ICC as they are seriously dangerous.

So I have had two PICC lines, as both sites got infected, realized most medical care (oxymoron?) professionals do not listen, which is an ability to HEAR and UNDERSTAND what the speaker is saying.

I have a nurse come to the house twice a day, I cannot drive, I cannnot be in the sun, but my ultimate goal is to get well, and I think slow and steady might win me that race.

I was thankful to find this site this morning, it truly is wonderful to be here, not so much because misery loves company, but more to know that what is happening to me is "normal" in my current situation.

You all wrote such wonderful stories I sat and cried nodding my head up and down, I truly appreciate running with the big dogs.

K, about time to disconnect IV from pump, something I can now do independantly, and I opened two cans with a can opener all by myself the other day.

Things are looking up, not walking like I have cerbal palsy anymore, the aphasia is passing, as is the dyslexia and tingling is limited to my finger tips...

Strength to all of you as we need it in these desperate but informative hours... and all typos and misspellings are my own

[ 28. August 2006, 06:05 PM: Message edited by: CynBy ]

--------------------
wpcj,
Cyn [Wink]

Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Hey Cyn!! Welcome!!

Do us lymies with vision problems a favor....go back and edit your post and put SPACE between every few lines, like I did here.

We can't read it otherwise. I would have "fixed" it myself, but it's more than I have time for right now.

WE DO want to help, OK?? I'll be back later too.

What's TBRD??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

PS...click on the icon with the pad and pencil. It's up there next to your name....go all the way across to the right to find it.

Then you can edit your original post.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

bettyg
Unregistered

posted

welcome, I'll send you by PM, private message, my newbie links/advise; 15 pages...

Also, when editing as Lymetoo suggested, please leave ONE BLANK LINE between each paragraph so we neuro lymies can comprehend/read your text better. Thank you for helping us all out.
Bettyg [Big Grin]

IP: Logged |

troutscout
Frequent Contributor (5K+ posts)
Member # 3121

posted

God Bless You.

Trout [Wink]

--------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
www.iowalymedisease.com
[/URL]

Posts: 5262 | From North East Iowa | Registered: Sep 2002 | IP: Logged |

ConnieMc
Frequent Contributor (1K+ posts)
Member # 191

posted

Are you seeing Dr. S B in Portsmouth? If so, you are in good hands. I saw her once when I became very ill while visiting my family in Norfolk. I thought she was wonderful.

Posts: 2276 | From NC | Registered: Oct 2000 | IP: Logged |

just don
Frequent Contributor (1K+ posts)
Member # 1129

posted

If you are lucky you are still in the early stages where treatment is VERY effective at knocking this down.(AND hopefully for you, OUT)

Sounds like you have it figured out quite well. Just be SURE to be treated LONG enough!!! Research and help yourself figure your way thru this terrible maze of symptoms.

Stay out of the ER's they will indeed kill you!!

Stick around for the support and information this site is famous for!! Might even find a chuckle somewhere here!! Mostly cause I am still --just don--

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just don

Posts: 4548 | From Middle of midwest | Registered: May 2001 | IP: Logged |

CynBy
Member
Member # 9957

posted

Sorry about not knowing the post protocol. Have edited initial entry.

Will try to write in two line bytes. I too have the vision problems.

Have been taking beta carotene amd acidopholus (sp?)the past few days. Seems to help.

Pulled out from the libary an old book called the Yeast Connection, originally published in 83.

I have been a walking yeast ball since October past, 3 bouts of thrush.

Neurological yeast infections will cause the dropping of the words and the dyslexia.

Having always been a voracious reader, and condemned to glasses since the age of 7, I use a sheet of paper to read. Helps...

My Gloria Gaynor moments throughout this past year have been rather creative. I will survive.

Now that my projectile vomiting days have ceased I will again ingest expensive vitamins, minerals and herbs.

In the interim I asked for iv electrolytes, vitamin C and complex B. Got the electrolytes and the vitamin C.

Tres helpful, and how does that song go 2 out of 3 ain't bad... you go Meatball.

I do my supplemental infusions on Fridays, I am hooked to different dripping bags on Fridays for 20 hours.

At one juncture 3 bags are dripping into my small flat veins. Well worth it, and I have two portable pumps.

The bags are chic, I make a fashion statement. I'm too sexy for your party the way I am infusing.

I requested same, as I do not see how anyone can get better whilst the invasion of the body snatching parasites are depleting my cells.

Then we add in for chits and giggles the projectile vomiting and severe diarhea.

These depleted cells are now replicating cells that are starved and useless. No way Jose can anyone get betterer.

The angel doc indeed is DR S B, I am truly blessed. I have two GPs that care.

I have been given their home phone numbers and cell numbers. That is truly medical care.

Also helped the night I escaped from the ER, as they were once again intent on killing me.

Finally got home, and the ER doc called the poleece. The po po rolled up on my house at about 11 p.m..

They were nice. This is the Casa de la Gimps. One kid in a wheel chair, from open reduction ankle surgery, another on crutches, me with my cane.

The coppers did not want pepsi, I explained I was well within my rights to leave hospital and take iv, and noone ever hasd to sign any papers.

Alas, I told the nice peace officers, the problem is I cannot drive, the kid on the crutches can.

However, we cannot leave the Down Syndrome child alone in the house, as she cannot ingress and egress independently in her wheelchair.

So perhaps, after we go back to see Doc Frankenstein, would they be kind enough to drive me back home.

They agreed. I asked to make one more phone call. Called my little boss as he is an attorney at law.

He informed the officers that I had not broken any laws, big duh there good buddy.

We proceeded to the squad car. Earlier that day I had been transported in an ambulance, my neighbors would want the real dirt soon.

They radioed their sargeant. Sargeant says does the lady want to go back to hospital.

Did a twist on that redneck woman song and said a big hell NO.

I was free to leave. The cops were from NYC too. Da Bronx, I am from Manhattan, we bonded.

NYers really are nice people, iffen they don't stab you. Twas a nice reunion down here in Dixie.

Hear tell the ER doc is seriously wigging I was not brought back. I reported her to several agencies.

Then we had to do drug testing. They did the full 3 tier scan.

No one scanned for antibiotics, so I flunked drug addict 101.

But I did promise all that I would go to an AA meeting (Antibiotics Annonymous), once cured.

See it was Thursday, no way jose was I going to miss my 20 hours of infusion therapy on Friday.

I look forward to Fridays, needed that butterfly IV. Have small flat veins they colllapse easily.

TBRD = Tick Borne Rickettsial Diseases

LLMD = Lyme Literate Medical Doctor

wpcj = With Peace Comes Joy

Once again I want to thank you all, I am looking at at least another year, but more likely 2 to 3 years of therapies.

This stuff is really scary, what a wondrous sensation to know others have journeyed farther than I.

You all are still fighting, gives me great hope

--------------------
wpcj,
Cyn [Wink]

Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

Hey Cyn! Thanks for editing. Interesting reading there!!

I truly appreciate running with the big dogs.
Yeah, that's us!! [Cool]

Loved the cop car story. Free ride, huh?!

There are many more of us munchkins in Medical. That's where all the nerds hang out...just kidding!! [Wink]

Some of them don't even know General Support exists!!

Thanks for the TBRD thingy. Here's more:

Abbreviations for Lyme-speak
http://flash.lymenet.org/ubb/Forum1/HTML/020494.html

again...welcome! [spinning smile]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

Carol B
Unregistered

posted

Cynthia- Welcome- and you are just in time to come to my birthday party!

All treatment and no play does Carol a dull girl make-so I like to keep it on the lighter side.

Actually I am so dizzy from what what life has thrown at me lately it just looks like I'm dancing.

So I laugh in order not to cry. I hope i'm getting better-but today I had to surrender to
a major headache.

Life is Fragile, Handle with Prayer,
Carol

IP: Logged |

bettyg
Unregistered

posted

Cindy, thanks for the beautiful job you did of editing your original post.

Wow, girl, have you been thru the mill, ER, cop stories, etc. I realy feel for you, but love your wonderful, spirited sense of humor! [Big Grin]

Thank you for your abbreviations!

So you work for an attorney; bet those cops dead in their tracks dealing with you..lol. Glad you found & joined us for this 24.7 support/education info. Bettyg [Big Grin]

IP: Logged |

tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159

posted

Welcome, Cyn [Smile]

One question:

Scurvy?

Really?

(Sorry, guess that's two questions.)

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Tabby

California Lyme support group

Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002 | IP: Logged |

AliG
Frequent Contributor (1K+ posts)
Member # 9734

posted

God bless you, Cynthia!

What the he** bit you? twice? 11 known & 1 unknown?

I'm glad you can keep your humor up! You managed to make a really horrible story very entertaining. It's too bad it's true.

I'm sorry but I can't write anything else right now. It seems I'm having scrambled brains for breakfast this morning and I can't come up with anything witty.

Keep up your fight! You'll get through this.

My prayers are with you.

[Smile]

Ali

PS- I just went back to the board & I can't Get past the "Hi my name is Cynthia and I have TBRD" without a chuckle. Thanks so much for your humor! [Big Grin]

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Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner.

Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006 | IP: Logged |

CynBy
Member
Member # 9957

posted

Y'all are tooo kewl [Wink]

Coming off a short albeit painful hurtz. [dizzy]

I can see now, (a bloody miracle I tell ya, sorta like when all those IF Docs say I am better, toss my crutches cause I am having a Lourdes moment).... [confused]

Amazingly, Scurvy has made a grand resurgence in these United States, due to eating disorders and use of illegal uncontrolled substances, (ie extasy)... [lick]

As for what bit me, in this one womans limited and humble opinion, (yes mine all mine, you will have to come up with your own), it was a super flea. [Eek!]

As though it is not published commonly, it is a known truth that any blood sucking erythropod (read bug, I do so love that word), can transmit same. [Cool]

Y'all rock on... (Jimmy Dean) lmao [group hug]

--------------------
wpcj,
Cyn [Wink]

Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

quote:
Originally posted by CynBy:
As though it is not published commonly, it is a known truth that any blood sucking erythropod (read bug, I do so love that word), can transmit same.

Y'all rock on... (Jimmy Dean) lmao

Have you read this?
The cause and spread of Lyme
http://flash.lymenet.org/ubb/Forum1/HTML/032259.html

Jimmy Dean??

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

CynBy
Member
Member # 9957

posted

Hey Hee Rock and Roll, rock on... more lyrics then Jimmy Dean, James Dean... tis a song

I do admit though sometimes I feel like Jimmy Dean, ( a rebel without a clue in this latest adventure in my life), and sometimes I feel like I've been tied to the whipping post...

I digress, great link, thank you, when the aphasia passes gonna try and call some of those people along with that biologist who is researching ways to kill off permanently this pandemic...

By the by we believed the Plum Island foul up was deer that made their yearly migration by swimming across the sound to CT. But maybe it was the birds too, Alfred Hitchcock knew...

As a biowarfare technique, if this is what it is, it is admirable, specially since when you kill the leetle f ers they release toxins as a final fare thee well...

I don't care though at this point where it was conceived. Won't stop the effects that are regaling my body. I am there, got it, its a moot point for now...

However, as an aside, after talking briefly twice with a high placed army officer/doctor who studied this extensively and can not really share with me, it would be my wont to believe it is biowarfare.

Naught all to be done about that, says this here middle age gimp...

Now on to the healing... if I am gonna live my life, I am hades bent and determined to enjoy it... take hope all who walk this pitted path [group hug]

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wpcj,
Cyn [Wink]

Posts: 20 | From Virginia Beach, Virginia | Registered: Aug 2006 | IP: Logged |

Lymetoo
Moderator
Member # 743

posted

I was wondering! The Jimmy Dean I know sings country!! [Wink]

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001 | IP: Logged |

tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159

posted

The Jimmy Dean I know makes sausage [spinning smile]

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Tabby

California Lyme support group

Posts: 2098 | From San Diego, CA, USA | Registered: Sep 2002 | IP: Logged |

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