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Old 07-13-2006, 07:35 PM   #1
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Neuro Lyme Symptoms-any one else?

I a am 28 year old mom of 3. I was diagnosed with late Lyme infection in Feb. I began antibiotics (Doxy-400 mg and Flagyl-500 mg) right away. I expected to see improvement for my symptoms but have only gotten worse. My Lyme symptoms were many: exhaustion, hypotension, arthritis pain all over, strange shooting pains, pain in one spot in mid spine area, weak muscles, some nausea/dizziness, no libido, horomone problems, dramatic weight loss, cognitive problems (memory, problems with speech) also irritability and of course, depression.
Also, I don't know if any of you have experienced this very bizzare sleep paralysis where you wake up and you are paralyzed all over-everything even your lips are completely numb. Takes a little bit to gradually be able to move a limb and when you do it is so heavy. If any of you know what I am talking about, please write so I don't feel like a weirdo!
The last couple of months I have continued to have the annoying pain in the mid spine area. Some days it is hard to sit back or lay on my back. If you have ever had an epidural, it feels like an epidural is in that spot in my back.
My left leg has been going numb and staying numb. At first it was a couple of days at a time, followed by heel pain. Now it is frequently numb and my hands and arms are starting to go numb as well. Some days, my fore arms feel very "weak" and sore and things are harder to lift. I have had 3 episodes of major lightning bolt like pain shoot through the top of my head and it was so intense, but only lasted a few minutes.
I saw a Neuro Dr. Monday and he made no speculations. Only said I needed to have several MRI's done asap. I go in next Thur. for those. I see him the following Mon. for the MRI results and game plan. He offered me no medication and no ideas as to what he thinks this is. I am wondering what you guys think? Could it be MS? I have read that Lyme can cause demylination SP? of brain/spinal cord.
My Lyme Dr told me I needed to get a port put in and go on I.v. rocephin. I have an appt. on the 27th of this month to get the port and begin rocephin the next week. I still can not picture me doing that, but it looks like that is where I am headed if I don't get a miracle.
Anyone else in this boat? Or do you have thoughts on alternatives? Anyone else with the neuro symptoms? Thanks for your help.
Thank you in advance for any comments

 
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Old 07-13-2006, 08:19 PM   #2
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Re: Neuro Lyme Symptoms-any one else?

I don't have the extreme numbness like you do but have had some of them. I definately wake up with that heavy feeling, almost like my limbs are dead weight. I don't have it very often though.

I wish you luck with your MRI's. Please let us know the reults ok? Hopefully someone here will be able to answer more of your questions.

Cindy

 
Old 07-13-2006, 08:30 PM   #3
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Re: Neuro Lyme Symptoms-any one else?

Hi,

Sorry you have been ill.

It may be possible that some of the worsening of symptoms is to to the Jarisch-Herxheimer reaction. Did the doctor tell you about this? This occurs when the causative organism is killed off. It releases neurotoxins and causes a symptom flare up. It can also produce new symptoms as the antibiotics start killing off Lyme in areas where it had previously been dormant. So it's good on the one hand because it indicates that the Lyme is being killed, but can be downright alarming to have your symptoms worsening.

Last edited by TINUVIEL; 07-13-2006 at 08:31 PM.

 
Old 07-13-2006, 08:32 PM   #4
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Re: Neuro Lyme Symptoms-any one else?

Thanks Cindy. Thankfully the sleep paralysis thing is only once in a blue moon. It just shows up, usually when I have a flare.
I will do my best to post results after my appt on 24th

 
Old 07-13-2006, 08:39 PM   #5
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Re: Neuro Lyme Symptoms-any one else?

Sorry you are having such a hard time. You probably are herxing. Hang in and detox as much as possible.

I also had alot of your symptoms. I do frequently wake with the extreme I don't have the energy to move feeling. But not quite like you describe. But lyme has such a wide range in symptoms.

It has to be hard treating lyme and being a Mother of 3 at the same time. My girls were practically grown when I was infected.

Please keep us informed on your progress. and there will be some. steps forward and back. but you will win the war. might lose a battle or two but the war is what counts.

Marsha

 
Old 07-14-2006, 05:08 AM   #6
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Re: Neuro Lyme Symptoms-any one else?

Hi Southernbelle,

I too have the neuro symptoms you describe. I suffered with the sleep paraylisis for several years. I haven't had it in awhile. It scared the you know what out of me. I couldn't move any part of my body but I was mentally awake. I would try so hard to get some part of me to move but nothing would happen. Sometimes I would even hear a loud band inside my head. My neuro did a sleep study which showed everything was okay..because it didn't happen that night. I can't remember his exact explanation but it was something like my mind was going into deep sleep before my body. I guess that loud bang is very common. People have that almost every night when they goto sleep they just don't hear it because they are already in REM. One time it happened to me and my eyes were open. My husband rolled over and looked at me and that I was dead. As soon as he shook my arm I came out of it.

I have all of your other symptoms too. I have had lyme for at least 10 years but was just dx'd last March. I am currently taking amoxicillan 3000 mg a day. I had a complete remission of lyme for almost 2 months. Sadly, everything is coming back. It is just a bump in the road though. We will get better.

I take an anti depressant now. I have for almost a year. It really helps me out. It also stopped the sleep paraylisis.

I hope you feel better soon. Take care...deb

 
Old 07-14-2006, 06:00 AM   #7
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Re: Neuro Lyme Symptoms-any one else?

Hi.

Sorry to hear about how sick you are! I have neuro Lyme too and it stinks!

Everyone knows that feeling when you go into a room and then can't remember why they went in there. But for someone with Lyme, it happens all the time.

My memory was horrible and I felt drunk all the time. I had fevers and headaches and I lost my sense of balance. I was like an amnesiac with the flu who had too much to drink.

I suffered every single minute of every single day. I completely understand.

I'm a single mom of 2 - so I can relate a bit on that topic also. Its so darned hard to do even the little things like make snack or remember a play date.

The good news is that Lyme is curable. You will feel better someday. Hang in there.

Peace and health to you.

 
Old 07-16-2006, 10:39 PM   #8
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Re: Neuro Lyme Symptoms-any one else?

Hi southernbelle2,

Most of your symptoms sound like mine, but my numbness appears to be due to poor circulation caused by the Lyme. Yours sounds different and more extreme than mine. I've had my arms go numb when I am sleeping if I put them over my head. I only do that with one at a time thankfully---otherwise I don't know how I would get them to wake up. As it is, I have to lift the "dead" arm with the other one and move it down below my heart.

Your reaction to the medication might be so extremely bad because of the combination you were given as your first treatment---especially if your Lyme is chronic. How long do you think you've had it? Are the symptoms you are experiencing the same as before you started medication just more extreme, or do you have some new ones?

I haven't taken Flagyl yet, (it will me my third antibiotic) but I've heard it tends to cause extreme herxes just by itself.

I took the same dose of doxy as you were given, and my herxes on it were bad enough. I certainly wouldn't have wanted to have anything else on top of it, but I do know some doctors use combination therapy.

Maybe you could ask your doctor if you could back off of one of them for a little while?

I've read that Lyme can mimic MS so well---even the brain lesions---that only the Lyme test results really differentiate it. Be aware that if your neurologist isn't an expert in Lyme (especially Lyme testing), they very well could come to the conclusion you have MS. I know of one person myself that had been diagnosed as having ALS and was in a wheelchair; then they got diagnosed with Lyme and can now walk again. I've heard of the same thing occurring with MS.

Last edited by KCLyme; 07-16-2006 at 10:48 PM.

 
Old 07-17-2006, 02:19 AM   #9
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Thumbs up Re: Neuro Lyme Symptoms-any one else?


Well here it goes im 56 yr old male.I wasn't sure were to put my reply,Cause i also have Neuropthy,from caner treatments i had in 2002,I have had almost all your symtoms you are describing,With Neuropthy i have had since 2002,But then 2005 I was engaged with this Deer Tick that put me down for afew days before i realized what it was,Soonm after i came down with a fever and took myself to the VA hospital,They directly gave me atibiotics,for 30 days,But i don't think it worked,I can't sleep at night wake up to every little sound now,If i lay om my right sied My left side fulls to sleep and vise a versa.Sometime i try laying on my back.My feet will not stop moving around,I have no control in stopping them.My hans right now are going pins and needles while typing.My left backside shoulders get numb for no reason while standing or sitting sometimes.Ive been taking methadone since 2002,Ive taking all kinds of antidepresents,for the pain,But to no luck.I get headaches so guick,My wife is so tired of hearing me complain about all my symtoms im afraid to say anything to her when i get a new one.I get so tired so fast out of breath just walking,Depression comes fast,Pain in legs continuely,Memory loss,Temper flare ups,My Prayers are with you. God Bless

 
Old 07-17-2006, 05:56 AM   #10
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Re: Neuro Lyme Symptoms-any one else?

Hi southernbell2, welcome to the board!

I am sorry you have been so sick. How long do you think you have had Lyme? It can take time to recover and it is not unusual to feel worse before feeling better. I am glad you are seeing a Lyme doctor. Were you also tested for the co-infections ticks can transmit: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? This is important. Many people who have Lyme are co-infected.

I don't have experience with the sleep problem you describe, but Lyme can cause so many symptoms. Below is a symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
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
Exaggerated symptoms or worse hangover from alcohol

IV treatment seems very scary and overwhelming in the beginning, but it really is easy once you get the hang of it. A nurse will show you how to do the infusions until you are comfortable doing them on your own. When you have an IV line, it is very important to keep the site clean and dry at all times. An infection in the line can be deadly. If there is ever any question about how the site looks or feels, call your doctor or nurse immediately.

There is a product called Aqua-Guard that is a plastic square that can go over the port site so you can shower without getting the site wet. The adhesive on these is pretty strong so be prepared when you remove it!

Hang in there okay?

 
Old 07-17-2006, 06:01 AM   #11
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Re: Neuro Lyme Symptoms-any one else?

Hi Jagee, welcome to the board!

I am sorry you have been so sick. How long do you think you had Lyme before you got treated? Thirty days of treatment is not long enough for Lyme. Did you see the symptom list posted above? Many people who have Lyme also have restless leg syndrome.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Babesiosis can cause the shortness of breath you describe.

If you post where you are located we can tell you of the closest Lyme doctors to you that we know of.

Hang in there okay? Good help is available and you are not alone.

 
Old 07-19-2006, 03:55 AM   #12
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Re: Neuro Lyme Symptoms-any one else?

will i thank you for that info,I live just out side of augusta,ga.i go to the VA Hospital there,I think i had it for approx 4 or 5 days before i really started feeling the affects,When i had started i was doing something that i had always enjoyed duing and thwen all of a sudden i found out i couldn't due it anymore,I had a fever of 104 and i just felt so week and Blah so I went in and told my wife i thought there was something wrong with me.A week before me dog that sleeps with me under the covers died from a tick,So i think i was bitten by the same one,At first it looked like a little red pump but later threw the days it started to take on a bigger reddiness up to the point a nice looking target,Approx when i started getting sicker .

 
Old 07-19-2006, 05:18 AM   #13
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Re: Neuro Lyme Symptoms-any one else?

Hi Jagee. I am so sorry your dog died. The co-infection Ehrlichiosis can be deadly to dogs. Maybe this is what your dog had.

I highly recommend that you see a Lyme doctor. The bullseye rash you describe is a definite sign of Lyme. You need further treatment. The closest doctor to GA that I know of is either in Huntersville, NC or Temple Terrace, FL (near Tampa). Would you like one of their names?

I hope you can see someone soon so you can get the treatment you need.

 
Old 07-19-2006, 12:55 PM   #14
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Re: Neuro Lyme Symptoms-any one else?

Will the thing is,Ive had thelyme for a yr. now,so isn't it to late to seek other help?

 
Old 07-19-2006, 01:30 PM   #15
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Re: Neuro Lyme Symptoms-any one else?

Hi Jagee. It is never to late to get help. Many people who have Lyme went undiagnosed for years before starting treatment. With proper treatment, you can get better!

 
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