posted
I have so many questions, but am wiped out emotionally at the moment and will post more when I regain my composure a little more. I had a BAD experience with the neuro at JH today; who highly defended CDC...so basically I am screwed by these CDC happy ducks.
I have had 10 days Augmentin followed by 30 days doxy ~ back in July-Aug timeframe. I forget the mg amounts tho. Still sick.
I tested positive for IGG WB on bands 41 and 58 and told I am neg for Lymes. I dont believe that for a moment.
Anyway, I am still very sick, bascially being told I am cured, and now it is suggested I have somatization disorder. Lovely. I have never had a somatization anything before and refuse to buy into that. I am 39 and have never shown anything like that in all my medical history. How humiliating. I cant possibly be imagining all of the symptoms I have!!
ANYWAY~ went to a neuro today and he told me I must have had the rash (I didnt, but was exposed to ticks) AND must ALSO have bells palsy or some other huge complication like that to warrant longer term treatment.
My question is this~ can a lymie suddenly develop bells Palsy even after a course of abx??? Can it occur at anytime if Lyme is undertreated but once treated nontheless??
And What is this?? DO I have to wait til my face drops to be taken seriously even though I have a long list of other symptoms??? Why are the other symptoms just shrugged off like that and cast away is insignificant?? They are very significant to me and affecting everyday of my now miserable life.
Today is it, I have had it ~ I have exhausted all avenues of regular docs. The expense of a LLMD is so high for our family and I tried to jump thru the hoops with docs who will take my ins, but that has proven fruitless and a complete waste of time, but I am now forced into that option now. Thank you to everyone who has sent me LLMD referrals by the way, it is appreciated and I will get to one asap. I am terrified of the out of pocket expense, tho I would rather that money go to my children
I was also given a huge warning by one of my recent docs to avoid non-traditional protocols as it can cause other problems down the road such as Lou Gehrigs, etc...I felt like that was a scare tactic and not sure what to make of it. I do have that in writing from him. From my own understanding and I may be wrong in what I have researched, I thought acquiring Lou Gehrigs is more of a possibility with UNDERTREATED Lymes as a complication thereof.
I am at a complete loss. I am depressed and feel hopeless.
Thank you for the input everyone.
Todays visit put so much anger into me. Just spurs me even more to advocate and be proactive and make damned sure things pertaining to this disease/treatments changes.
Posts: 25 | From MD | Registered: Sep 2007
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posted
Well, I know I have had LYME for atleast 8 1/2 years-since 1999, no doubt about that. I didnt get Bells Palsy until 2 years and 3 months following in 2001. Fortunately for me it was
incomplete and "recovered" although my face spasms like crazy now and ever since. But it started up as I was driving down the road to work and BAM my left side of my face drooped down and FROZE! It scared me to death, then
it started spasing like crazy, I mean OFF THE CHARTS@ I thought I had a stroke. I went to the ER. By the time I got in it had "relaxed" but was still spasing like crazy.
Told them what happened, they looked me over and said....
drum roll please....
its a sinus infection.
Stupid me at the time was like - i didnt know a sinus infection coudl do THAT!!!!
and went on with my 10 days of abx and was happy as lark...except it kept on spasing like crazy and drooping, then releasing, then drooping, then...well you get the drill.
So, in my humble opinion, yes it can come on later. Took me long enought to answer that one didnt it!!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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stymielymie
Frequent Contributor (1K+ posts)
Member # 10044
posted
PLEASE PM ME FOR HELP
DOCDAVE
Posts: 1820 | From Boone and Southport, NC | Registered: Sep 2006
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posted
OMG ~ I literally am wondering how these doctors are earning their degrees. It is very scary to think about.
A Sinus Infection causing BP?? That is the stupidest dx I ever heard of so far in my research on Lymes.
I am very sorry you had to go thru that!
I do appreciate you taking the time to write a response to my post.
And thank you for the heads up there. If my face suddenly drops, I can imagine and brace myself to be given any number of reasons why it dropped OTHER than it clearly being lyme-related.
I am soooo stumped I am scratching my head on what those docs told you!!! Ugghhhh!!! I feel so much for you!!
posted
Thanks but unfortunately you get thicker skin the longer you go through this, sadly but true.
As a matter of fact, there was a post not too long ago about teh dumbest or worst thing ever said to you by your dr - I ahd forgotten about
this until the topic came up! WOW!
Oh, guess that is just an age thing...memory issues...couldnt be Lyme - heck every woman in their 30's does that, right!?!? LOL
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
As a Mom of two young children (who also have Lyme)
And still trying to rebuild our lives since Katrina,
I can understand the financial burden of seeing a LLMD
As well as your desire to spend that money on your children.
By taking care of yourself, you are spending that money on your children.
I hope you can see that you getting well and being able to do more
Things with them is the greatest gift you can give them.
I am sending you prayers and positive thoughts.
Let me know how I can help you.
PM me if you need to.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Unfortunately, JH drs are among the worst. Forget Mayo as well. They are all clueless.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
I got Bells about 10 yrs after becoming sick- it lasted about 6 months and then went away-
this was All before I figured out that I had lyme --Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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daise
Unregistered
posted
Hi folks,
I agree Geneal. Katrina, too? Oh my. You're strong.
CJNelson: Sinus infection, ya right. That's terrible.
Dear sickoflymeo7: Here are some of my reactions from conventional docs:
"You need an antidepressant." (3 docs: no screening. Guess they could tell just by looking at me! I refused. Exactly what did they base that on?)
A rheumatologist FROM LONG ISLAND who moved here thought he could intimidate me when I said the phrase, "Lyme disease." I figured he was a Long Island reject. I live a couple thousand miles from Long Island.
After 7 months I proclaimed to my PCP, "I feel very strongly that I have Lyme disease." He replied, "Lyme disease is rare and only in Connecticut."
After seeing my PCP for 7 months more (and flying over his head to get a nurse case manager) he said: "I wonder if this is menopause." (I was done with menopause--if he'd checked his records, he'd have known that. This was after a CD57 showed chronic Lyme disease and my case had been consulted with a top-of-the-line ILADS doc.)
I rattled off some of my signs that could not be ignored: bad limp, locked shoulder, right arm didn't swing when I walked, and more. I stood up and I walked out.
I got a new PCP and my antibiotics--Hurray!
But then that PCP called an infectious disease doc--the enemy--and, so, cut all antibiotics.
Very soon I started up again with LA Bicillin shots and flagl (metronadozole.) By then I'd gotten an in-state LLMD I could drive to see, as my insurance changed to Medicare.
(I was looking for a new PCP)"My new LLMD handles my Lyme disease." She replied, "First, I want to take you off some of the drugs." And a couple other condescending remarks. I'd seen her all of 2 minutes, tops. There was no screening or asking--of anything. She spent the two minutes reading my note, explaining that I have Lyme.
I quietly said, "People with Lyme disease are not bad people." Then I walked up to her and repeated quietly the same thing. I walked out. She said nothing. When I was going out the door she shouted down the hall to me. Don't know what she said.
The financial burdens for all of us are overwhelming, sickoflyme07 .Please hang in there, just hang in there. Get creative. Do you have a nurse case manager with the insurance company? They can be a huge help in handling the details for testing, arranging for an out of network LLMD and so forth. Unless you have a bad insurance company.
You are welcome to PM me, OK? I have had antibiotics for over a year, and oh dear God yes, these are helping me.
Do you know if your insurance will pay for meds? If so, that leaves the LLMD office visits to pay for ... but probably not with an HMO. Some insurance companies don't pay for meds.
A PCP can administer an LLMD's program for you. You will likely have to visit a lot of PCP's to find one who will do that. Can the nurse case manager help with that?
One woman said that when she got enough idiot misdiagnosis', she figured she must have Lyme!
This has been the very short story.
I had Bell's palsy for 4 1/2 months, with other Lyme signs and symptoms. The VA deliberatly misdiagnosed me with a stroke. I was severely hypothyroid. That was a factor!
People with Lyme are used to being told crazy things from most conventional doctors.
There are good docs out there.
Do you have the support of your family? It's very important to share in detail what you are going through, so they understand.
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!
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I would rather that money go to my children 
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![[group hug]](graemlins/grouphug.gif)
sickoflyme07 ![[hi]](graemlins/hi.gif)
You are welcome to PM me, OK? I have had antibiotics for over a year, and oh dear God yes, these are helping me.
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