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Old 07-30-2007, 11:27 PM   #1
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Post Lyme Disease?? or Parkinsons??

Hi everyone,
I am 36 female stay at home
mom of 3 and Navy wife.

We have lived in Groton CT/ Newport RI/ Chesapeake VA/ and other
area's. These 3 are significant because I know they have had high
reports of Lyme disease.

Currently been refereed to a "movement disorder specialist"
specializing in Parkinson's. They have pretty much ruled out MS
they cannot find any lesions. I have had MRI's (found disk herinations)
spinal tap and EMG/EEG and blood work.
My Neurologists are just baffled.


Never noticed a bullseye rash but I was alone alot
husband deployed could have just missed something.
Fatigue and limping started in 2003 while living in Chesapeake VA
and has declined since.

I just recently looked into/considered the possibility of lyme disease
after Daryl Hall's interview on fox news recently when he talked about
TREMORS in association with Lyme disease. And looking into the sympoms
it seems very similar to mine and association with late stage Lyme.

SYMPTOM CHECK LIST

Unexplained chills -started at night as attacks
Fatigue, tiredness, poor stamina
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach/nausea especially during tremors
diarrhea
Joint pain or swelling -knee pain
Stiffness of the joints, neck, or back
Muscle pain or cramps -especially in feet/toes
Headache
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, vertigo, poor balance
Lightheadedness, wooziness
Tremors in hands/arms/legs
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Rigidity and stiffness
Difficulty getting up from sitting
Light sensitivity and noise senitivity is extreme
and causing headaches.
Cannot wiggle toes on feet
Balance issues


Curious if it's standard practice to test for Lyme disease
when testing spinal fluid. Or do you have to specifically ask
to be tested for Lyme's disease.

Curious how many of you have tremors?
And anyone taking Requip?

I am going to demand the tests for Lyme's.
Any wisdom would be fantastic.
Jennifer

Last edited by jenillumine; 07-30-2007 at 11:33 PM.

 
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Old 07-31-2007, 01:30 AM   #2
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Re: Lyme Disease?? or Parkinsons??

Getting a lab that can reliably test for Lyme and the Coinfections is crutial.
Igenix has an excellent rep. Maybe others here have suggestions.

Michaeal J Fox was diagnosed with Parkinsons after being bitten by a tick infected with Lyme.

 
Old 07-31-2007, 07:36 AM   #3
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Re: Lyme Disease?? or Parkinsons??

jenillumine,

I'm so sorry that you have to go through this. My story sounds very similiar to yours. I have neurological Lyme's which causes all kinds of tremors, muscle weakness, nerve pain, memory loss, loss of coordination and balance etc etc etc.

I was sent to a Rhuematologist and a Neurologist. All they could find is that my EEG and EMG came back "quirky"...great techical term they gave it. He said that my nerves worked "right" just different and it was quirky. He also said I had a Rhythmic Mid Temporal Discharge. He said that neurologists really don't know what that is. After taking w/ people on this board, they had said they had weird brainwaves too on their EEG's. My MRI was normal.

So, I wouldn't rule out Lyme. It's a great imitator of other diseases or conditions. Basically I had to rule everything else out and then I was able to get a doctor to listen to me about Lyme.

What really sealed it in for me that I had Lyme's is anytime I would take antibiotics (for a sinus infection etc) I would get horribly sick on them. Then, after I was done, I would feel like a million bucks for a month or so. Then, it was downhill after that. It's a typical Herx response that happens when the Lyme bacteria are being killed. They release toxins into the body and exasperate symptoms or create new symptoms.

Check into Igenex in Palo Alto, CA. They have the best testing for Lyme. You can order up a kit and have your doctor's office draw the blood and mail it.

 
Old 07-31-2007, 10:41 AM   #4
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Re: Lyme Disease?? or Parkinsons??

Quote:
Originally Posted by standishtrio View Post
jenillumine,

I'm so sorry that you have to go through this. My story sounds very similiar to yours. I have neurological Lyme's which causes all kinds of tremors, muscle weakness, nerve pain, memory loss, loss of coordination and balance etc etc etc.

I was sent to a Rhuematologist and a Neurologist. All they could find is that my EEG and EMG came back "quirky"...great techical term they gave it. He said that my nerves worked "right" just different and it was quirky. He also said I had a Rhythmic Mid Temporal Discharge. He said that neurologists really don't know what that is. After taking w/ people on this board, they had said they had weird brainwaves too on their EEG's. My MRI was normal.

So, I wouldn't rule out Lyme. It's a great imitator of other diseases or conditions. Basically I had to rule everything else out and then I was able to get a doctor to listen to me about Lyme.

What really sealed it in for me that I had Lyme's is anytime I would take antibiotics (for a sinus infection etc) I would get horribly sick on them. Then, after I was done, I would feel like a million bucks for a month or so. Then, it was downhill after that. It's a typical Herx response that happens when the Lyme bacteria are being killed. They release toxins into the body and exasperate symptoms or create new symptoms.

Check into Igenex in Palo Alto, CA. They have the best testing for Lyme. You can order up a kit and have your doctor's office draw the blood and mail it.
TY so much for the wisdom and support.
I haven't been on antibotics for a long while.

My EEG came back odd too. They really don't discuss
details with me because much of it doesn't make since to them

My Nerve study tests came back bad in my legs.
And my spinal tap was fine except for high spinal fluid still within
normal range.

I will check out the Igenex in Palo Alto, CA.

Quick question: Are your tremors gone? Could you discribe your
tremors? And what are your symptoms now?
Best Regards,
Jennifer

 
Old 07-31-2007, 10:56 AM   #5
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Re: Lyme Disease?? or Parkinsons??

I just ordered the test from CA. Igenex
They are putting it in the mail today to FL.

They said the costs run between 95.00 and 400.00 but well
worth the money to rule it out at this point or find answers.

Once I get the test I will not stop till I find a Dr. to run the bloodwork.
Any ideas on what to bring to the Dr. so they can decide what panel to
run? Should I just print the WHAT TEST TO ORDER page from Igenex??
I think perhaps because of the neurological problems I am showing I should
push for the full panel.

WISH ME LUCK~~~
Jennifer

 
Old 07-31-2007, 11:30 AM   #6
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Re: Lyme Disease?? or Parkinsons??

If you have the funds available, I would suggest to the run the full panel. Typically, you can talk to the doctor on staff at Igenex and he'll tell you which test to run. My doctor (who's an LLMD) just had me do the Western Blot through Igenex right now ($180 or so). He'll order more tests if needed...I actually appreciated him not going for the $500 tests b/c I just can't afford it right now.

My tremor is in my right hand. It will shake hard if I try to hold anything. I also, drop items from my hands ALL of the time...drives me nuts. I did end up going to a chiropractor and through his adjustments, my tremor did get better. It only flares up if I in bad sorts. I also have muscle twitching everywhere (kind of like when your eyelid twitches..but it's everywhere on me). I also have creepy crawly sensations everywhere and it keeps me up at night. My speech isn't so great and I sound like a broken record sometimes. I've also been driving around and can't remember where I'm at. Sometimes, I'll forget how to do simple tasks like using my computer. My reflexes are slow and sometimes I have problems writing with a pen..it's like my hand gets stuck. Also, there is nerve pain on varying degrees. Going to the Chiropracter has helped a little.

Also, if I drank any type of aspartame, I would break into horrible convulsions that would last for hours. Aspartame is a neuro-toxin and it also can activate Lyme bacteria or make it worse.

On a daily basis, I deal with low grade fevers, exhaustion, nausea (but no weight loss!!), joint stiffness/pain, confusion, lack of concentration, VERY moody, lack of menstruation (I've used to be like a clock in that dept), chronic yeast infections, blurred vision/eye twitching. And the list goes on and on......

Be vigiliant and never give up. I kick myself over and over again for not getting help when I first got bit and had a rash. I would be so much better off today if I would have listened to my instincts. Getting a positive test is half the battle. The other half is finding a doctor who will treat your Lyme's properly. If a doctor tells you they can treat Lyme's w/ six weeks of antibiotics, then they are not knowledgeable about Lyme Disease.

What I have done that has been helpful, is I have requested copies of every test/lab that's been run on me. I have a file now (it's huge literally) that I will take to any new doctors I see. I have them make copies of my file and I keep the originals.

I also make a detail list of my symptoms (what they are, when they started, details), medications and questions I have. I then give this to the doctor. Since my speech isn't so great and my concentration is lacking, I have found that having these things on paper makes things easier for me and the doctor.

 
Old 07-31-2007, 11:58 AM   #7
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Re: Lyme Disease?? or Parkinsons??

Quote:
Originally Posted by standishtrio View Post
If you have the funds available, I would suggest to the run the full panel. Typically, you can talk to the doctor on staff at Igenex and he'll tell you which test to run. My doctor (who's an LLMD) just had me do the Western Blot through Igenex right now ($180 or so). He'll order more tests if needed...I actually appreciated him not going for the $500 tests b/c I just can't afford it right now.

My tremor is in my right hand. It will shake hard if I try to hold anything. I also, drop items from my hands ALL of the time...drives me nuts. I did end up going to a chiropractor and through his adjustments, my tremor did get better. It only flares up if I in bad sorts. I also have muscle twitching everywhere (kind of like when your eyelid twitches..but it's everywhere on me). I also have creepy crawly sensations everywhere and it keeps me up at night. My speech isn't so great and I sound like a broken record sometimes. I've also been driving around and can't remember where I'm at. Sometimes, I'll forget how to do simple tasks like using my computer. My reflexes are slow and sometimes I have problems writing with a pen..it's like my hand gets stuck. Also, there is nerve pain on varying degrees. Going to the Chiropracter has helped a little.

Also, if I drank any type of aspartame, I would break into horrible convulsions that would last for hours. Aspartame is a neuro-toxin and it also can activate Lyme bacteria or make it worse.

On a daily basis, I deal with low grade fevers, exhaustion, nausea (but no weight loss!!), joint stiffness/pain, confusion, lack of concentration, VERY moody, lack of menstruation (I've used to be like a clock in that dept), chronic yeast infections, blurred vision/eye twitching. And the list goes on and on......

Be vigiliant and never give up. I kick myself over and over again for not getting help when I first got bit and had a rash. I would be so much better off today if I would have listened to my instincts. Getting a positive test is half the battle. The other half is finding a doctor who will treat your Lyme's properly. If a doctor tells you they can treat Lyme's w/ six weeks of antibiotics, then they are not knowledgeable about Lyme Disease.

What I have done that has been helpful, is I have requested copies of every test/lab that's been run on me. I have a file now (it's huge literally) that I will take to any new doctors I see. I have them make copies of my file and I keep the originals.

I also make a detail list of my symptoms (what they are, when they started, details), medications and questions I have. I then give this to the doctor. Since my speech isn't so great and my concentration is lacking, I have found that having these things on paper makes things easier for me and the doctor.


So many of the things you mention here ring true for me as well.
The brain fog typically kicks in right when the DR starts asking questions.
I cannot think about more than one thing or a time. And.. cannot think or do at the same time. I pretty much went from being well adapted at multitasking mom of 3 kids to pretty much one thing/task at a time or it just doesn't get done..

I have brought lists, my neurologists hate those I think.

My tremor is pretty everywhere. Hands/wrists/arms and legs and it effects
my speech too. I too drop things I am holding and my grip is weak. I also have this stiffness and rigidity that become very painful in my joints.
The tremor is what the neurologist cannot figure out. They say I show some entrainment which could be a psychogenic tremor. So, I am in the fight of my life right now trying to prove my tremor organic not psychiatric.

And there is my walking. It's horrid. The more tired I get the more I drag my legs. And lately cannot keep my upper body straight when sitting. I lean usually to the right. They have found weakness in my legs and my right side.
I really limit the amount of time I walk. Only doing 2 or 3 outings a week. And if i go grocery shopping its at night when it's less crowded.

Aspertame is found in soda? I usually drink juice.
I have a thing for grape juice or cranberry lol

Another biggie for me is light sensitivity/noise.
My husband often jokes we live in a cave.
Cold/dark and quiet. My head hurts the instant
sunlight hits me or any kind of light.

I am glad to hear your tremor got better.
And can certainly understand the creepy crawly sensations
keeping you up at night. I found requip helps some with that.
As you can tell I jump around a lot in thought. I basically try to
get my thought out as quick as I can before I forget something
I am trying to say. lol

Anyway, i am blessed to found this community of support.
Jennifer

 
Old 07-31-2007, 12:00 PM   #8
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Re: Lyme Disease?? or Parkinsons??

Quote:
Originally Posted by itsmylife View Post
Getting a lab that can reliably test for Lyme and the Coinfections is crutial.
Igenix has an excellent rep. Maybe others here have suggestions.

Michaeal J Fox was diagnosed with Parkinsons after being bitten by a tick infected with Lyme.


I had NO idea Michael J Fox was bitten by a tick. -wow
I know he has early onset parkinsons. And this connection with
Lyme to Parkinsons is very interesting.

Congrats again on your test results.
Jennifer

 
Old 07-31-2007, 12:22 PM   #9
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Re: Lyme Disease?? or Parkinsons??

I would not be surprised if he really had Lyme and Coinfections. It would not shock me to find he was misdiagnosed.
Daryl Hall also had Lyme disease. That was several years ago and he had to cancel a tour. I'm curious if he is still suffering with after effects.

 
Old 07-31-2007, 12:22 PM   #10
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Re: Lyme Disease?? or Parkinsons??

I can understand where you're coming from. During college I was able to memorize huge amounts of info and have excellent memory recall. I'm also a pianist and was able to play intricate musical pieces from memory. I had a 3.8 GPA and was involved with everything. Now, it's all I can do to remember the name of a common everyday object. I used to never have to write anything down b/c I was the ultimate multi-tasker, now I can't hardly remember if I brushed my teeth in the morning or not.

Besides being sick, I feel so bad for my kids. I have two small children who deserve a Mommy who's healthy and able to take care of them properly. There have been times where I have been so tired, I'll just pass out on the couch. Nothing can wake me up and it scares me to death that my two year old is going to get into something and hurt herself. I try really hard to keep it together and stay awake but it's just unbearable sometimes.

I'm just missing out on so much and I hate it. I try to keep going for them and take them to activities or parks but all I can do is just sit on the sidelines and watch. It breaks my heart for them.

Don't let those dr's feed you a line of this being psychosomatic. They tried to pull that on me when I was having the convulsions and I told them "How on earth can I fake a severe convulsions for 4 HOURS!!!" That's one thing that us Lymies have to deal w/ is people or doctors saying "Oh, you're just depressed...oh, you're just stressed out.."...."GIVE ME A BREAK!!!!!" I told someone if I hear one more person tell me that my problems are psychological, then I'm going to get psychological on them!!! Sorry to vent, it just makes me so mad when dr's can figure out what's wrong w/ someone and they just immediately assume it's psychosomatic.

You're tests are NOT coming back normal. Maybe they don't understand the results but to completely dismiss them as psychosomatic is unethical. If they don't know, then they need to send you to someone who does.

Keep on track and MAKE your doctor write the order to have your blood drawn for Igenex. You probably won't have any trouble w/ it but don't take no for an answer if by chance the doctor decides to make things hard.

Aspartame is artificial sweetener. It's found in most sugar free products. Splenda isn't any better. Just check the labels really good and stay away from Nutrasweet, Splenda, Aspartame. Stevia is okay. I can also use Sweet N Low b/c it's made of saccharin which is natural. People normally will stick up for Splenda by saying "It's made from sugar."....I can tell you w/ all certainty that I have the same convulsions on Splenda as I do w/ Aspartame.

I'm very sensitive to light and noise. I have to wear dark sunglasses even on cloudy days. It's strange b/c I've actually lost hearing but I still find moderately loud noises unbearable.

I think you're on the write track to getting better.

 
Old 07-31-2007, 12:27 PM   #11
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Re: Lyme Disease?? or Parkinsons??

Quote:
Originally Posted by itsmylife View Post
I would not be surprised if he really had Lyme and Coinfections. It would not shock me to find he was misdiagnosed.
Daryl Hall also had Lyme disease. That was several years ago and he had to cancel a tour. I'm curious if he is still suffering with after effects.
That is SOOO insane about Michael J. Fox. Did they ever confirm that he does have Lyme's? What's the details on his tick bite? Did it happen when he was an adult or child?

You know, Michael J. Fox was on a sitcom when he was really young (before Family Ties). I think it was filmed in Canada? They said that EVERYONE who was on the show (minus one or two people) have all been diagnosed w/ Parkinson's. Makes you wonder if it was something environmental.

 
Old 07-31-2007, 01:26 PM   #12
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Re: Lyme Disease?? or Parkinsons??

Besides being sick, I feel so bad for my kids. I have two small children who deserve a Mommy who's healthy and able to take care of them properly. There have been times where I have been so tired, I'll just pass out on the couch. Nothing can wake me up and it scares me to death that my two year old is going to get into something and hurt herself. I try really hard to keep it together and stay awake but it's just unbearable sometimes.

I'm just missing out on so much and I hate it. I try to keep going for them and take them to activities or parks but all I can do is just sit on the sidelines and watch. It breaks my heart for them.



Okay now I am becoming emotional.

For the first time since I have been sick I feel/share another MOTHER's emotions united as parents of children.

Tears are rolling down my face because your words are EXACTLY the way I have felt and continue to feel about being a mother and being sick.

When one member of the family is sick the intire family is effected. You are exhausted 24/7 on top of just trying to get thru one day to the next.

You have teachers and other parents asking: "Why do you tremor" or "What's wrong with you". in front of your children. Then you are forced to explain basically, what the neurologist of the month thinks "it could be"... or the ever reliable "They are still running tests on me".

Right now, my children are 13 -Kyle 11 -Kiersten and 6 -Owen. My daughter helps me each and every day because I am unable to awake till noon or sometimes 1pm each day. Because it's summer and everyone is out of school. Kiersten gets everyone fed and sometimes gets lunch around. Kyle is old enough he can feed himself. They all watch tv or play computer games and occupy themselves well quietly.

The guilt of not being able to arise before noon is just incredible. On the weekends my husband takes over mornings. And then when I awake I can clean and get things done for about an hour before exhaustion sets in.

I just cannot imagine having Lyme disease and any other neurological disease and or having a baby and toddler. Especially any late stages of either.


You must have family near you or some kind of help.
And you must be exhausted to the point of collapse every single day. I can imagine you push yourself each day thru the pain and exhaustion.

I was in physical therapy till I graduated lol. Or kicked out because my insurance decided I had enough therapy to have either learned how to help myself or they have helped me a little. One of the first questions my therapist asked me was did I have a baby or toddler. Some sort of social services questions because apparently I am not safe to walk and hold a baby. -big sigh

It is just incredible how much being sick can change a person.
I was reading obituaries of those with Lyme disease. Often those people had
an INCREDIBLE ZEST for life. They loved life and the outdoors. They became sick and transformed them no longer the person they had once been. And many of them died from suicide and or Lyme complications.
Some had no diagnosis till the AUTOPSY!!! -just incredible.

My heart breaks for children of sick parents as well.
And we all continue to push on, carry on and do the best
we can while being parents. And love our children no matter
how bad of a day we are having.

Jennifer

Last edited by jenillumine; 07-31-2007 at 01:28 PM.

 
Old 07-31-2007, 01:50 PM   #13
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Re: Lyme Disease?? or Parkinsons??

I can COMPLETELY understand what you're going through. It's one thing to deal w/ your own sickness but it's another to feel the guilt and sadness from not being able to take care of your own kids.

I pretty much am a zombie all day long. Since my kids are little, they still take naps so I hang in there until they go to bed...then, I sleep too. I know it's only by the grace of Jesus that I'm able to make it through as best as I do. Fortunately, I been able to get on a small dose of antibiotics every few months or so for reasons like "sinus infections" "yeast infections" etc. It will typically lesson my symptoms for a month or so. We do have family around but they all pretty much think I'm a hypochondriac. Luckily, my husband "tries" to help a little but he's frustrated w/ the whole situation and is tired as well. The doctor I'm with right now is trying to get me on a PICC line and worse case scenario, I'll just do oral antibiotics. This should start up in 2 weeks or so.

In January 2007, I was at my worst. I couldn't hardly walk b/c it hurt so bad, I couldn't think and I was worried about the safety of my children. My doctor, who was of course unsympathetic said, "It could be a lot worse.". I about wanted to choke him. At the time, all I wanted was to be put on Celebrex or something that would help w/ the pain. I didn't want to be on narcotics b/c that just created new problems. I looked him in the face and started sobbing. I told him that he HAD to help me and give me something that will help w/ my pain b/c I was unable to take care of my kids. He then found a little shred of feeling left in him and wrote me a rx for Indocin. It's not a narcotic which is good. It's an anti inflammatory and it has helped me get a little bit of my life back. I'm still really tired but at least I can walk w/out hurting so bad.

The worst is when I had lost a lot of feeling in my finger tips and kept dropping things. At some point, I must have dropped an Ativan pill. I of course couldn't hear the pill hit the floor b/c I have hearing loss. Then, my daughter (who was 18 months at the time) found the pill and ate it.

Long story short, I had to call an ambulance for her (at the time I had no idea she had swallowed a pill) and rush her to Children's Mercy. The poor thing could stand up, sit up or walk. She just kept screaming and crying. Eventually, they found out she had swallowed the pill. I of course felt like the most horrible mother on earth. They kept her all night and she literally screamed the WHOLE night b/c ativan makes kids aggressive and combative...she was every bit of those.

Luckily, my kids aren't old enough to realize how sick I am and how serious it is. My son is 4 and almost every night, I hear him praying in his room for Jesus to make Mama all better. Talk about ripping your heart out. I have such wonderful kids.

I can't imagine how difficult it is for your kids to hear the possible diagnosis' of your problems b/c all of them are very serious conditions. I know people are trying to be kind by asking what's wrong but they really need to be mindful of your children overhearing your conversation. Perhaps there's a way that you can politely tell them that you don't want to discuss it in front of your children but you appreciate their concern. I think people would completely understand.

Of course, I have to be so careful what I tell people b/c I'm so afraid someone might say, "You're not a fit mother". That would absolutely devastate me. I just keep pushing myself and doing what I can...even if it's just sitting on the couch.

 
Old 07-31-2007, 02:09 PM   #14
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Re: Lyme Disease?? or Parkinsons??

Quote:
Originally Posted by standishtrio View Post
I can COMPLETELY understand what you're going through. It's one thing to deal w/ your own sickness but it's another to feel the guilt and sadness from not being able to take care of your own kids.

I pretty much am a zombie all day long. Since my kids are little, they still take naps so I hang in there until they go to bed...then, I sleep too. I know it's only by the grace of Jesus that I'm able to make it through as best as I do. Fortunately, I been able to get on a small dose of antibiotics every few months or so for reasons like "sinus infections" "yeast infections" etc. It will typically lesson my symptoms for a month or so. We do have family around but they all pretty much think I'm a hypochondriac. Luckily, my husband "tries" to help a little but he's frustrated w/ the whole situation and is tired as well. The doctor I'm with right now is trying to get me on a PICC line and worse case scenario, I'll just do oral antibiotics. This should start up in 2 weeks or so.

In January 2007, I was at my worst. I couldn't hardly walk b/c it hurt so bad, I couldn't think and I was worried about the safety of my children. My doctor, who was of course unsympathetic said, "It could be a lot worse.". I about wanted to choke him. At the time, all I wanted was to be put on Celebrex or something that would help w/ the pain. I didn't want to be on narcotics b/c that just created new problems. I looked him in the face and started sobbing. I told him that he HAD to help me and give me something that will help w/ my pain b/c I was unable to take care of my kids. He then found a little shred of feeling left in him and wrote me a rx for Indocin. It's not a narcotic which is good. It's an anti inflammatory and it has helped me get a little bit of my life back. I'm still really tired but at least I can walk w/out hurting so bad.

The worst is when I had lost a lot of feeling in my finger tips and kept dropping things. At some point, I must have dropped an Ativan pill. I of course couldn't hear the pill hit the floor b/c I have hearing loss. Then, my daughter (who was 18 months at the time) found the pill and ate it.

Long story short, I had to call an ambulance for her (at the time I had no idea she had swallowed a pill) and rush her to Children's Mercy. The poor thing could stand up, sit up or walk. She just kept screaming and crying. Eventually, they found out she had swallowed the pill. I of course felt like the most horrible mother on earth. They kept her all night and she literally screamed the WHOLE night b/c ativan makes kids aggressive and combative...she was every bit of those.

Luckily, my kids aren't old enough to realize how sick I am and how serious it is. My son is 4 and almost every night, I hear him praying in his room for Jesus to make Mama all better. Talk about ripping your heart out. I have such wonderful kids.

I can't imagine how difficult it is for your kids to hear the possible diagnosis' of your problems b/c all of them are very serious conditions. I know people are trying to be kind by asking what's wrong but they really need to be mindful of your children overhearing your conversation. Perhaps there's a way that you can politely tell them that you don't want to discuss it in front of your children but you appreciate their concern. I think people would completely understand.

Of course, I have to be so careful what I tell people b/c I'm so afraid someone might say, "You're not a fit mother". That would absolutely devastate me. I just keep pushing myself and doing what I can...even if it's just sitting on the couch.

Exactly,
I need to come up with better answers for those that ask in front of
my kids. I know my children worry about me.

And once again brain fog sets in when I am ever put on the spot.
And I usually just end up babbling.

You must have been completely besides yourself when your daughter found
that adivan. The guilt of that I cannot even imagine. Its hard not to blame yourself especially when your children are involved. And as mothers we always blame ourselves.

So, basically you cannot get antibiotics? To help you feel better?
Sorry, i am new here and don't know your complete story.

I get the impression you are having difficulty finding a good DR. to
treat you aggressively. I get the feeling this is more common than not.
I have read with chronic Lyme's disease it is important to treat aggressively with antibiotics.

I am frightened. Not because I need to convince a DR. that I need this test sent to CA to detect a tick disease, because I fear the testing could be the easy part.

Jennifer

 
Old 07-31-2007, 02:23 PM   #15
Senior Veteran
(male)
 
Join Date: Oct 2004
Location: USA
Posts: 541
itsmylife HB User
Re: Lyme Disease?? or Parkinsons??

Quote:
Originally Posted by jenillumine View Post
I had NO idea Michael J Fox was bitten by a tick. -wow
I know he has early onset parkinsons. And this connection with
Lyme to Parkinsons is very interesting.

Congrats again on your test results.
Jennifer
I honestly think the connection in Michaels case is a misdiagnosis. I watched his E hollywood biography and he didn't start to experience the tremors until he went on a drinking binge....he was also working 20 hour days...and he described his finger wiggling just like with Lyme.

And of course on top of all that, he was bitten by a tick with Lyme before the onset of his chronic "Parkinson's."

Who has has his phone number, I'll give em a call.

Last edited by itsmylife; 07-31-2007 at 02:24 PM.

 
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