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Old 01-21-2007, 03:23 PM   #1
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Please consider this if you may have ALS

If you may have ALS, you may want to consider Lyme disease as a possibility. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. Lyme disease is the second fastest growing infectious disease in the US after AIDS, and it is the number one vector borne disease. It is in every state, yet little is being done to educate the public and medical community. It can cause many seemingly unrelated symptoms.

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

No Lyme test is completely reliable and results can vary by lab. It is my understanding the ELISA or titer is the least reliable and the one most doctors run first. It is important to be tested by a Lyme lab such as IgeneX in Palo Alto, CA.

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 Many doctors do not understand Lyme and treat with outdated protocols.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. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab also.

Lyme disease is known as the great imitator. Many people who have Lyme were fist diagnosed with other diseases including MS, ALS, CFS, and Fibromyalgia. There was an article in People magazine a couple of years ago about a man in Pennsylvania who was diagnosed with ALS, and he found out he has Lyme.

For some reason, tick-borne infections are often not considered as a possible diagnosis. I have been very debilitated from five tickborne diseases, and I am still being treated. I was seeing doctors for months, going through extensive testing, and tickborne infections were never considered a possibility. A nurse mentioned to me that she thought I might have these diseases, and she saved my life.

For more information on Lyme disease and other tick-borne infections, please read the post "Lyme Disease Information" on the Lyme disease board on this site at [url]http://www.healthboards.com/boards/showthread.php?t=259463[/url] If you need a doctor recommendation, let us know.

If you think this is a possibility, I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line) and the book
"Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.

My heart goes out to all who are suffering from debilitating symptoms.

Last edited by ticker; 09-09-2007 at 03:42 PM.

 
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Old 01-25-2007, 07:57 AM   #2
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Re: Please consider this if you may have ALS

Hi Ticker:

I was wondering what your symptoms are/were. Listen to this story and let me know what you think.

A 35 y.o male family member was bit by a deer tick about 1-2 yrs ago, had the bullseye rash, and at the time was mistreated with a one day dose of antibiotics. Gradually he has been experiencing left hand finger and wrist weakness. He has gone to a few neurologists who are leading down a diagnosis path of ALS. When tested for antibodies to lyme his blood test results came back as 0.91 which reads as equivocal (not positive/not negative). There was no evidence of lyme detected in any spinal fluid or through any other tests the neurologists ran. Over the last 2-3 weeks he has been treated by an infectious disease dr. who put him on IV antibiotics. While muscle twitches in his left arm have subsided/decreased, the weakness in his left hand fingers appears to be worse.

With your experience, what are your opinions and/or advise.

Thanks

 
Old 01-25-2007, 01:36 PM   #3
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Re: Please consider this if you may have ALS

Hi tsgkn. I am sorry your family member has been so sick. A bulls-eye rash is a definite sign of Lyme disease. The rash alone merits treatment regardless of test results.

It sounds like the test he had done was the ELISA or titer. No test is completely reliable, and from what I understand the ELISA is the least reliable and the one most doctors run first. Spinal taps show Lyme in less than 5% of cases.

What is his doctor's plan of action? How long will he be on the IV antibiotics? Do you know which med and dose he is taking? If he has had this for a couple of years, he will likely need long-term treatment. It is very important for him to also be tested for all the co-infections mentioned by a Lyme lab such as IgeneX.

It is very important to see a knowledegeable doctor. These diseases need aggressive and sometimes long-term treatment. 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.

When getting treated for tick-borne illnesses, it is normal to feel worse before feeling better and it can take some time (especially for someone who has been sick for a while). It is a good idea for this person to document his symptoms daily. One way to do this is to list the three main symptoms he has each day and a numerical rating of their severity, from 1-10. Over time when he reviews this, he can see when his herxes occur and how he is responding to the meds.

My advice would be for him to see a Lyme knowledgeable doctor as soon as possible and be tested for all the co-infections. If you need a doctor recommendation, let me know. It can be tough going through treatment, but with proper treatment he can get better.

Your family member is very lucky to have your support.

 
Old 01-26-2007, 10:38 AM   #4
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Re: Please consider this if you may have ALS

Hi Ticker:

Thank you for your reply.

Do you think his hand getting weaker might be a sign that the antibiotics are working?

Also, what were your first symptoms and how are you doing now --symptom wise?

Thanks

 
Old 01-26-2007, 01:54 PM   #5
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Re: Please consider this if you may have ALS

Hi tsgkn. Yes I think it is possible the weakness is a sign that the antibiotics are working. It is good that the twitches have decreased. Be aware that Lyme symptoms can wax/wane and migrate around the body.

I got five diseases from a tick bite and almost died. By the time I was diagnosed, I was about 3% alive. I had the majority of the symptoms on the Lyme symptom list, including fatigue and neurological problems. Babesiosis, one of the co-infections, is similar to malaria. My case was severe. Hallmark symptoms of it are shortness of breath, heart palpitations, night sweats, muscle pain and weakness, severe headaches.

I had five diseases and now have two. It has been a long, difficult road, but I am getting better. In my opinion, the most important thing someone with tick-borne illnesses can do is to see a knowledgeable doctor.

 
Old 01-28-2007, 04:00 PM   #6
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Re: Please consider this if you may have ALS

Hi Ticker!

In which state are you located? We are in Connecticut. We did see an LLMD in CT that we learned about by reading these health boards. He did not seem to be much help ---took our $ and told us to go to some place on Colorado.

Do you have any recommendations for a good MD in Conn. --not so much an LLMD but maybe an infectious disease specialist that knows alot about lyme?

Thanks

 
Old 01-28-2007, 04:19 PM   #7
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Re: Please consider this if you may have ALS

Hi tsgkn. I live in TN and travel out of state to see a knowledgeable doctor. Which doctor did you see? Dr. Steven Phillips in Wilton comes very highly recommended.

Unfortunately, infectious disease doctors are usually the worst to see for tick-borne illnesses.

 
Old 04-12-2007, 06:52 AM   #8
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Re: Please consider this if you may have ALS

Apparently 2 years ago, there was a Lyme Disease Conference in Connecticut, where one of the doctors (a Dr Whitaker) theorizes that ALS could be the end stage of Lyme Disease. This is due to the fact that many ALS signs and symptoms exactly mirror the symptoms of Lyme Disease. As well, she states that her test has found that most if not all blood sent to her from ALS patients, were positive for Lyme.

Very interesting..

 
Old 04-12-2007, 08:28 PM   #9
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Re: Please consider this if you may have ALS

Hi datgrlstef. I agree that it is interesting.

Many people who have Lyme were first diagnosed with other diseases including CFS, Fibromyalgia, MS, and ALS.

 
Old 09-09-2007, 03:43 PM   #10
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Re: Please consider this if you may have ALS

Bringing post up

 
Old 09-10-2007, 04:30 PM   #11
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Re: Please consider this if you may have ALS

You die from ALS but you don't die from Lyme. Right? Just feel miserable.
So if someone is diagnosed with ALS and they don't die, isn't that a clue that the diagnosis is wrong? I am really tired of these wrong diagnosis.

I was terribly sick for 2 months from a flare-up of LYME (most likely) (the fever, chills, shakes, muscle aches....)
and no one could figure out what was wrong with me. Finally my sister---who remembered my bout with LYME 12 years earlier, said maybe it is Lyme.

My flare-up finally burned itself out and hid again --- I have been symptom free for 4 years.

However, I have a lot of the other insidious symptoms that could be put down to stress, overwork and menopause.
I recently went thru a bout of rashes all over my body and literally nothing I did would get rid of them/ We tried cortisone and benadryl. I eliminated everything I could think of. No matter what, in a week or two I would break out again. My dr was going crazy and me too.

Finally, the rashes stopped. But now I am wondering if this was just another form of flare-up....Lyme== it's your bitter enemy.

 
Old 09-11-2007, 04:30 AM   #12
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Re: Please consider this if you may have ALS

Hello again Ticker,

I know this isn't related to ALS... but I wanted to talk to you again about what's happening with my family. If you remember, I wrote back in August about the diagnosis of my son (and possibly my wife) that was given after vacationing in TN (your home state)... wanted to give you an update. Both my son and wife have been on antibiotics since my sons diagnosis (3 weeks of amoxocillan for my boy and dexicycline for my wife) (please excuse any mispellings)... I contacted the pediatrician that you recommended in CT and have scheduled an appointment... but it's not until late November... Meanwhile, I found a Holistic Family Practice Docter in Sarasota, FL (that is allegedley a Lyme specialist, according to one of the Lyme websites)... we will visit her this week before his 3 weeks of antibiotics are completed (Our pediatrician refuses to go past 3 weeks as per his Infectious Disease Bible). Meanwhile, both my wife and son tested negative to the preliminary tests administered by there associated doctors. I have since ordered test kits from IgeneX and had my daughter was tested (awaiting results). We have two more test kits and will use them for my wife and son after the antibiotic regimen is complete.

I guess my question is this... I know this forum is primarily for those infected with stage 3 Lyme disease... Are there any happy endings for my son and wife who hopefully caught this early and are pursuing a cure?... AND... is 3 weeks enough antibiotic use... when going much further could damage my 5 year olds intestinal system with continued treatment... I'm willing to take the risk if the downside is worse.

I will get the opinion of the Holistic Doctor on Thursday... but wanted to hear what your thoughts were?

What are your thoughts?

Thanks,
Dan Z

My question to you in your obviously educated opinion, is...

 
Old 09-13-2007, 07:37 PM   #13
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Re: Please consider this if you may have ALS

Hi Dan Z, I am so glad you posted. I have been wondering about you and your family. How is everyone feeling?

Wow you have all been through so much. As you know, I am not a doctor. I believe that when someone has Lyme disease, it is very important to get proper treatment as early in the infection as possible. Early infections are the easiest to cure.

I am not trying to scare you, but it is unimaginable how serious and debilitating tick-borne illnesses can be if untreated or undertreated. This is often why people become so sick, sometimes even years after being bitten. Getting the proper treatment early in the infection may reduce the chance of long-term complications.

Many people were given 2-4 weeks of too low a dose antibiotic to treat their case. Sometimes they can keep the infection at bay for awhile, even years. Then when the immune system gets suppressed (illnesss, accident, divorce, etc.) symptoms emerge. Once it is disseminated, it is much more difficult to eradicate.

In my non-medical opinion, three weeks is never long enough treatment for Lyme disease.. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment.

I am very glad your children will be seeing Dr. Jones. I have heard only wonderful things about he and his staff. He has helped many children all over the country. In case you did not know, I believe his patients can stay at the nearby Ronald McDonald House for about $15.00 per family per night. This helps a little! You may want to call in advance to book the room.

It is also good you are having the testing done at IgeneX. Did you know they have a 15% discout for multiple family member testing? I am sure you can call for the details.

In my opinion, the damage that untreated or undertreated Lyme disease can cause pales in comparison to possible side effects of antibiotics. If it were my child who had Lyme, I would definitely make sure she was treated long enough and aggressively enough. Ask the doctor about acidiphilus that is safe for children to take, or if eating yogurt would be enough. This can help replace the good bacteria in the body. Just be sure the acidophilus is taken at least two hours apart from the antibiotics.

I am sorry I did not see your post before your appointment with the holistic doctor. How did it go?

Yes, there definitely is hope. These infections are early. As I stated before, early infections are the easiest to cure.

You are doing everything right. I think you are an amazing husband and father! Your family is very lucky to have your support.

Please keep me posted on how everyone is doing okay?

Last edited by ticker; 09-13-2007 at 07:38 PM.

 
Old 09-13-2007, 07:40 PM   #14
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Re: Please consider this if you may have ALS

Hi golfhat. It could be that you were not treated long enough and/or aggressively enough initially. Lyme symptoms can cycle like you describe.

What did your rashes look like?

You may want to consider seeing a Lyme knowledgeable doctor for an evaluation.

 
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