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Old 03-08-2007, 10:23 AM   #1
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Question Dazed and Confused over "Niece"

I'm new to all of this. Until about 4 days ago, I had no clue how invasive Lyme Disease might be. I am just beginning to learn. My "niece" was diagnosed with Lyme in middle January. She is twelve. Her mom said that when she was tested, it came back positive. From what I've read here, that seems a rare thing.
The Dr. started her on Doxy, it appeared to help. She then got even worse. She blacked out, her blood pressure did all kinds of wierd things. By the time someone would listen to her mom, she was bad. When they did the first spinal tap, her pressure was 50. There was so much fluid that it caused something behind her eyes to hemorrage. That's been a couple of weeks ago, she still can't focus.
She was weak to the point of needing her mom to carry her to the hospital. It took two nurses to hold her up to check her weight. She went into the hospital for four days, and they sent her home while she still had "mild" pain. She was home for 5 days and then went back in. She has tingling and burning in her hands and feet. Her spinal pressure the second time was 25. The doctors are beginning to think that she is dealing with the disease itself rather than the original explanation of a medication reaction.
My questions: What are the some of the long term symptoms? How frequently is this life long? How do we help her? What are the chances of her having a healthy family of her own, or is that completely unique to each case?
I'm looking for information from folks that have to live with this. I can learn from reading, but life experience can often be the best teacher to a willing student. Any information anyone can offer will be greatly appreciated.
Thank You.

 
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Old 03-08-2007, 11:09 AM   #2
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Re: Dazed and Confused over "Niece"

Hi angels_angel, welcome to the board!

I am sorry your niece is so sick. Lyme disease is not rare--it is the second fastest growing infectious disease in the US after AIDS and the number one vector-borne illness. It is in every state, yet many in the medical community are unaware.

Do you know how long she has been sick?

It is good that you want to learn. Knowledge is power. Below is a Lyme 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

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who ahve Lyme are co-infected. 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.

There are not many Lyme knowledgeable doctors. I don't know where you are located, but Dr. Charles Ray Jones in New Haven, CT is the best Lyme pediatrician in the country. I suggest calling his office for advice.

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks. This may have been what happened to your niece.

It is a good idea to document your niece's symptoms daily. One way to do this is to list the three main symptoms she has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when her herxes occur and how she is responding to the meds.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

Your niece is lucky to have your support. It can take time, but with proper treatment she can get better.

 
Old 03-09-2007, 03:28 AM   #3
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Beachgirl0916 HB User
Re: Dazed and Confused over "Niece"

Quote:
Originally Posted by angels_angel View Post
I'm new to all of this. Until about 4 days ago, I had no clue how invasive Lyme Disease might be. I am just beginning to learn. My "niece" was diagnosed with Lyme in middle January. She is twelve. Her mom said that when she was tested, it came back positive. From what I've read here, that seems a rare thing.
The Dr. started her on Doxy, it appeared to help. She then got even worse. She blacked out, her blood pressure did all kinds of wierd things. By the time someone would listen to her mom, she was bad. When they did the first spinal tap, her pressure was 50. There was so much fluid that it caused something behind her eyes to hemorrage. That's been a couple of weeks ago, she still can't focus.
She was weak to the point of needing her mom to carry her to the hospital. It took two nurses to hold her up to check her weight. She went into the hospital for four days, and they sent her home while she still had "mild" pain. She was home for 5 days and then went back in. She has tingling and burning in her hands and feet. Her spinal pressure the second time was 25. The doctors are beginning to think that she is dealing with the disease itself rather than the original explanation of a medication reaction.
My questions: What are the some of the long term symptoms? How frequently is this life long? How do we help her? What are the chances of her having a healthy family of her own, or is that completely unique to each case?
I'm looking for information from folks that have to live with this. I can learn from reading, but life experience can often be the best teacher to a willing student. Any information anyone can offer will be greatly appreciated.
Thank You.

Oh my! I am 19, and I have lost the use of my legs from Lyme....it can go from bad to severe in a matter of a week. I would know, it happened to me. I have been to 5 LLMDs here in NY for consults- and they all agree I have been infected for at least 8 years, I had a bullseye rash 2 years ago, but I didnt get treatment becasue to doctor said the bullseye could be an allergic reaction to the bite- not lyme. Im so tired of doctors who arent knowledgeable!!!!!!!!

 
Old 03-09-2007, 05:42 AM   #4
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Re: Dazed and Confused over "Niece"

Hi Beachgirl, welcome to the board!

I am sorry you have been sick for so long. Are you currently being treated?

Have you been tested for all the co-infections: Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma? This is important. It is estimated that 60% of people who have Lyme are co-infected. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective.

 
Old 03-09-2007, 08:05 AM   #5
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angels_angel HB User
Re: Dazed and Confused over "Niece"

Thanks for the support and information Ticker. Beachgirl, I'm so sorry to here about your legs. My niece has had trouble with hers as well. She has been very weak and has had lots of problems with standing: dizziness, low blood pressure, week legged and sore knees.
As far as we know, she got infected some time in Nov of last year. The Dr.s are thinking that her worsening symptoms, like the increased spinal fluid (is that considered menigitis even if the fluid is clean?) were do to an allergic type reaction to the doxy. They are testing her for other infections. Her Dr. is an Internal Disease Control Dr. working in Marshfield, WI. His name is Sullivan. I don't really know too awful much else about him. I'm 15 hours away by car, and the phone can be a poor substitute.
She has several different specialists working together. an opthamologist, a nuerologist, a rheumatist, as well as students that are observing the case. I think that Mom said there were 6 Dr.s involved, but I can't remember what else, perhaps a pediatrician is overseeing something.
Right now it is a waiting game. They have run some tests and are waiting for results to come back. I don't have any idea where they were sent to.
The one thing I do know is that they are planning on keeping her at least a week to try to get her some relief from the pain. So far they seem to be treating the symptoms. I'm praying that they can start to treat the cause soon too.

 
Old 03-09-2007, 12:23 PM   #6
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Re: Dazed and Confused over "Niece"

Hi angels_angel. When getting treated for Lyme, it is normal to have a worsening of symptoms (Jarish-Herxheimer Reaction as described above).

Unfortunately, as many others here can attest to, the majority of the medical community is dangerously ignorant about these diseases. People often become much sicker because of this. You are right that the cause of her symptoms needs to be addressed.

I highly recommend calling Dr. Jones. Maybe he could consult on her case. It is very important that she is tested for all the above mentioned co-infections. As someone who has had several, I know firshand how important it is to know if they are present.

It sounds like your niece's infection is relatively early, which is good. Getting the proper treatment early in the infection may reduce the chance of long-term complications. Lyme disease needs continuous, aggressive treatment. Most Lyme doctors will treat until all symptoms are gone plus at least two months longer.

 
Old 03-13-2007, 09:59 AM   #7
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Re: Dazed and Confused over "Niece"

My niece has come home. Some of the pain that she had, they found a totally unrelated cause for and have managed to get that handled. She is still in some pain, but they manged to get that under control. She is a walking pharmacy right now, and has more Dr. appts the next few months than the average pregnant mom.
There is still no definate answer to what is going to happen. There has been some damage done to the back of her eyes. Her joints are still very sore. She is moving on her own now. Getting up and sitting down are a challenge, but she's doing better. If she is chronic, they suspect that she could wind up in a wheel chair inside of 15 years.
I don't know what is going to happen from here, but one hurdle has been crossed just in getting her well enough to come home.
Right now, I'm grateful for that.

 
Old 03-13-2007, 11:35 AM   #8
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Re: Dazed and Confused over "Niece"

Hi angels_angel. I am glad you niece is home.

Again, I highly recommend that she see a Lyme knowledgeable doctor and get tested for all the co-infections. Lyme disease can affect all systems of the body.

 
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