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HIPHOPDIVA · 09-11-2006, 06:24 PM

So....here I am again. I have been out of work since the beginning of July....it is now September 11.
Initially when I was taken off work I was very lathergic, severe headaches, neck aches, and back pains. I would wake up with severe pains in my ears (the cartelidge)...so bad that I didn't want to pick my head up off the pillow for I was afraid they would fall off. Sick to my stomache, didn't want to eat. Lost weight.....and looked "green" as my boss stated.
Being as how I remembered these symptoms from my first "relapse" I knew what it was. I went my MD and he put me on muscle relaxers, pain killers, something for the nasua, and anti-biotics. After I finished the anti-biotics I went back to my MD and guess what....I had a fever. Couldn't believe it! How could I when I just finished 2 weeks of anti-biotics??? I continued to lose weight.
When I was first put on my medical leave of absense I could still do what I love...and that was play with my kids a little at a time, and do interviews for a magazine that I work for.....however...now....I only enjoy my children. I dont even want to do what I love anymore.
I am unable to drive....because I am disoriented even when Im not on my medication. I tried to drive the other day and wrecked my car. I was not on any medication at the time. Just misjudged....and on top of that....I couldn't even figure out my north, south, east, and west. I was irritated and confused because I didn't know where I was going. I felt like a stranger in a place so familiar to me.
So I finally got into see the Rumatologist (spelling...sorry) and he took blood to check my auto immune system...whatever that is.
Then today I went to see the oh so wonderful IDS. What a waste of trip that was...oh, and money too. He tells me there is no such thing as chronic Lyme and that the "bars" on the Lyme's test do not detect how active the Lyme's is. He also did not take blood to even check, said that it wasn't necessary. All he did was tell me to go back to my regular MD and have him refer me to a Neurologist. He stated he wont treat me unless the Neurologist states I have "inflamation around the brain" which would be meningitis.
This is my second time to an IDS and neither time has been of any help at all. My regular MD's treat me better than these IDS do.
Im frusterated as can be....however, I have come to a conclusion.....
With other health issues, such as cancer...the treatment is text book.....go thru surgery, chemo, medications....etc....
However, with us as well as MS patients there is no text book answer. There is no treatment....and we continue to get tossed from one DR to another.
I just want to throw up my hands and say I give up!!! However, when I look into those beautiful eyes of my children I know I can't.

Of the symptoms I have:
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sexual dysfunction or loss of libido
Upset stomach
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
History of a heart murmur and valve prolapse
Joint pain or swelling
Stiffness of the neck and back
Muscle pain or cramps
Twitching of the face or other muscles
Severe headaches
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness,
Lightheadedness, wooziness
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty writing
Mood swings, irritability
Disturbed sleep-too much, too little, early awakening

Pearlscale · 09-11-2006, 07:32 PM

Hiphopdiva
Sounds like you have reason to be tired of the run around. I'm sorry about your accident. But sounds like you made it out in one piece which is a blessing.

My opinion, I'm tired of the run around too. I go tomorrow to a different Dr at my Family Dr's office. I don't know how receptive she will be. I'll tell you tomorrow nite.

I have seen so many different drs in different specialitys and most do not get it. They don't want to try. Lyme in one ear and out the other. I do go to IDS that is also a LLMD. He is very good. But it would take both hands to count the other drs that didn't listen.

I understand the problems with your head. I wish it were possible to put a garden hose in one ear and wash out the brain, all bacteria, and toxins and let it all come out the other ear.

But I'm sure the CDC will change their guidelines and that will help us all. right???? LOL I know they are to make some decisions on guidelines around the first of OCT. I really hope and pray they do something that will put the spotlight on chronic lyme.

When it seems you can't put one foot in front of the other. Remember the faces of those kids. They need you.

Hang in there. This road we face is very difficult. Only other lymies can understand. But we're here.

Prayers...Marsha

TINUVIEL · 09-12-2006, 07:37 PM

Hi,

Sorry you are so ill. Your symptoms sound so much like mine were before I started treatment. I can definitely relate to the bit about being confused and disoriented. I used to get lost in my own neighborhood where I've lived for 20 years.

Don't give up, there really is good help, it can just be hard to find. The IDs are generally not very helpful. Is there a Lyme support group in your area? They can be great sources of support and help even if you are not officially diagnosed. Since many people with Lyme get the run-around from doctors before getting a correct diagnosis they are used to this and may be able to find you competent medical help. In the meantime you may want to consider using some herbal or natural methodologies to try and keep things at bay. I had to rely on this for years before I found a competent doctor. There is a very good product, Host Defense by New Chapter. It's very helpful for boosting immune response.

Your kids are lucky to have such a devoted and caring mom. Hang in there.

mizhanks · 09-12-2006, 10:39 PM

hello. I to am tired of the run around, the runaround of the federal disabilty office. SSD. I have had every symptom in the world for 5 years. I have tested positive several times. Been on all kinds of antibiotics, etc.
Has anyone been successful with their social security disability? I am 59 years old and cannot handle this anylonger.
Nancy in Calif.

6Blues · 09-13-2006, 06:39 PM

Hi HIPHOPDIVA, good to hear from you.

So sorry that you feel discouraged. I've been there.

Not getting any answers, tests coming back normal for this or that, going from one doctor to another, getting sicker and not feeling that anyone was taking me seriously ... but the worst was that scary feeling that there was something really really serious wrong with me and that I may die or get permanently disabled and never know what the cause was.

I feel for you. I've been there.

My apologies if you've said this before, but have you found an LLMD (Lyme Literate Medical Doctor)? There a few in sunny Cal. I hope you can contact one of them and get an appointment.

Also (again - sry if you've told me before - my memory can be like swiss cheese) have you been tested for Lyme and co-infections?

There is a great book "Everything You Need To Know About Lyme Disease ..." by Karen Vander-something. I'm sorry that I can't recall the right spelling of her name. If you do a search on this board, you can find it easily.

I hope you can read that book - it helped me in the begining.

I know that feeling of frustration you have, but please don't give up. Keep fighting to be heard and taken seriously. Keep researching, keep asking questions, keep going to doctors (an LLMD I hope) and stick up for yourself.

I have trouble walking, talking, driving, thinking, staying awake for very long, etc. Living life with kids is tough enough. To parent when you have Lyme is a heroic effort.

We are here for you. Peace and health to you.

HIPHOPDIVA · 09-15-2006, 10:28 AM

I Have Tested Positive 2 Times. The Ids Doesn't Think It Will Do Any Good To Poke Me Again Being As How I Have Already Tested Positive. But He Is No Help. He Wants Me To See A Neurologist For Pain Control. They Want To Do A Spinal Tap, But Last Time They Stuck Something In My Spine I Had The Ultimate Headache For A Couple Of Weeks....no Pain Killers Helped At All.
I Dont Know What Strand I Have Or Anything Like That.....i Feel If I Lived On The East Coast I Would Be In Better Hands.
At Least My Md Is Takin Care Of The Symptoms, But Im Tired Of Being Drugged Up All The Time. I Miss My Job And Want To Go Back....but That Wont Happen Any Time Soon.
Thank You Everyone For Your Support!!

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