Doctor Improving from ALS joins ILADS

[Lymiecanuck]

Hi There,

Thought you guys may want to see this article. It is at www.canlyme.com on the Home page. Dcotor with ALS tested postive for lyme disease and is improving. Now a member of International Lyme and Associated Diseases Society.

Take Care
Lymiecanuck

 

[PALS Mike]

Hey Lymie...

This was in the news last week - http://www.fortwayne.com/mld/newssentinel/11580071.htm

With iron will, unconventional treatment, ALS patient gets stronger every day

...In December 2002, doctors at the University of Texas Southwestern Medical Center at Dallas told him he might have amyotrophic lateral sclerosis (ALS), often called Lou Gehrig's disease. It weakens the body's muscles and then paralyzes them. It kills its victim, sometimes slowly, sometimes quickly, but always. In June 2003, the doctors reported that the diagnosis "has been confirmed."...

...Harvey is 67 years old, a graduate of the Air Force Academy and a retired NASA aerospace physician. During his 23-year career as an Air Force officer, he served as a biomedical engineer and a flight surgeon, and later in clinical aerospace medicine and in space medicine research at the U.S. Air Force School of Aerospace Medicine. After his retirement, he managed medical facilities for NASA and for a Department of Energy nuclear facility and for Lockheed.

His resume says he's a clinician in general medicine, but all the nearly 900 patients he says he has treated in the past four or five years have had symptoms similar to Charlie's.

His board certifications are in aerospace medicine, not internal medicine or epidemiology. But in space medicine, he says, NASA physicians weren't able to depend on medical books, because the books they needed hadn't been written yet. Now he's working without books again, he says, because what he's doing is new.

His theory is outside the mainstream of standard diagnosis and treatment. Briefly and simplistically stated, it's this: Many patients who are diagnosed with ALS, multiple sclerosis, Parkinson's, chronic Lyme disease, fibromyalgia, chronic fatigue syndrome and other motor neuron diseases actually are victims of a bacteriological infection that can be cured or at least alleviated with massive doses of certain antibiotics.

The bacillus is Borrelia burgdorferi. Harvey says it's present in the blood of millions of people around the world, often from birth. It's relatively harmless, he says, until something triggers it to attack the nerves that activate the muscles.

Its presence in the blood can't be detected by the standard tests that most labs and hospitals use. According to Harvey, only two labs in the U.S. - one in Florida and one in California - are equipped to find and identify it.

 

[ricturn]

Lymie's report

Thankyou for sharing that article and bringing it to all of our attention. We can't be so myopic to not be aware of some other research on ALS and unaware of some other country's like the US !

I personally am going to read the sources quoted and decide for myself, whether or not there is any validity to them !

Keep up the good work, Lymie, and keep us informed !

Best regards,
Richard Turner

 

[Lymiecanuck]

Hi,

I am guessing this is the same doctor. My brain is foggy today. lol.
I also beleive I was born with lyme and my son has it, and will also get my husband tested. I just bet him $200.00 that he will test highly positive cause he shows little symptoms, and this is the way it goes.

Has anyone else done any investigating to see if they have lyme./coinfections?

I have been on treatment for 5 months. I feel like I am backsliding and will try to add another abx to my treatment. In this time though I have gained back 12 pounds, have more energy, and have my colour back, hair has been growing back like crazy, but still have lots going on.

Take a look at your family and see if they have "problems". This is what i did and could painly see what was happening. My parents both died young of so called natural causes, but complained of heatlh problems for years and my mother being female was told she was mentally ill, and this is very common with lyme. Lyme can also be responsible for these so called rare disorders that we don't see everyday. I have no research to back that up, just what i have observed through this nightmare.

Hope everyone is hanging in there and doing okay.

Take Care
Lymiecanuck

 

[PALS Mike]

Lymie - Your story is about a doctor who has ALS/Lyme and my story is about a doctor with ALS patients who is treating them for Lyme.

I had a Lyme test (ELISA) done a couple of weeks ago and it came back negative...D'oh!
But on a positive note...I spoke to my neurologist today.
He's gonna refer me to an 'Infectious Disease Specialist'.
His thoughts were "I'm not an (Lyme Disease) expert and I can't offer you anything to cure you of ALS...so let's refer you to a specialist and explore this further."

I'll be sure to update you on what happens.

 

[ricturn]

to Mike and Lymie:

Keep us all informed - I'm sure we all are interested !


Richard Turner

 

[Lymiecanuck]

Hi Mike,

I hate to tell you this but you must know that ID docs are the worse for denying lyme. They most likely will look at your negative elisa and tell you, you don't have lyme, even if you do. This has happened to me and many others, but hey you never know. Those of us finally getting treated here in Canada, were tested with an american test from Igenex. It is not 100% but is more sensitive than Canada. know someone who tested neg on Canada's elisa but postive on the american and even most test negative on that. It is the western blots that people are showing up postive on.

This is the reason they keep saying lyme is so rare here, when it isn't.
And they viciously deny it. Same with the states, as most labs are like canada's labs unless you use Igenex. They specialise in testig for tick borne infections.

You need to find a doc willing to test with this test and go from there.

Good luck
Lymiecanuck

 

[Patsy]

This is taken right off the Canadian Lyme Disease Association webpage;
"Lyme borreliosis is now acknowledged as the most highly prevalent arthropod-borne human disease in northern temperate regions of the world5. Canadian medicine and science, due to the lack of recognition of the clinical diagnoses, combined with lack of surveillance and research, places us at the bottom of the scale in dealing with this serious disease. We are years behind. "
I used used to in public health in Ontario and our country is not looking for Lyme disease, at least not while worked there! For one thing, our lab testing for Lyme are not very effective to identifying the infection; so why look for something that you can not identify!

 

[Theresa2004]

I have a couple of questions and a statement. Question...there have been comments about the Canadian vs US testing for Lyme on the forum and a ton of scientific articles recently that honestly confuse the heck out of me. Is the IGENEX company's test the most reliable? If it isn't, what is the most accurate test available in North America? How do Canadians get access to that test? What is the Western Blots?

Point to make is for Mike and others. Mike, it is great that your doctor is willing to refer you for another opinion. If any one diagnosed with ALS, along with the other diseses mentioned, can have a positively accurate test to confirm or deny Lyme disease as their illness, or perhaps a trigger to ALS, Parkinsons etc etc, they need to know that. With that knowledge, as patients, you demand to have it done. You are the patient, the doctor is there to help and be responsible for as accurate a diagnosis as possible.
It may be up to the patient to push. I am not about to say that everyone with ALS has been misdiagnosed. Not true, however, as the information unfolds, we can't deny that may be the case for some.

I posed this question and comment some time ago, no one had experienced this, but we have new members reading who may be able to shed some light on this. For those who remember it, they can think up new logos for Mike to design...(kidding..gotta add some smiles ...)...my information is limited, but my association with an ALS patient told me they were on an intravenous drug every 10 days, (can't say if it was done at the doctors every 10 days or self administered...I am guessing self administered), origin, groin area. Has anyone out there been exposed to this type of treatment or had it suggested?I found it strange.

 

[Patsy]

From the research that I have done, the Western Blot and the Elisa blood tests for Lyme are not that accurate. They often get false positives with these tests and that would include the Igenex as well. I believe that the only accurate testing right now is through the Bowen laboratory. Although this test is not accepted by the main stream medicine, yet! Bacterias and viruses are not always detected by our present day main stream medical laboratory testing. We have to be open minded and at the same time cautious about new discoveries and new research. Some of the big researchers are usually sway to their own theories and hypothesis, and not always open to ideas that would take away research dollars away from their research. Not to say that all researchers are this way but it is very competitive for research dollars funding! Most out of main stream medical researchers were thought to be Quacks by the main stream medicine thinking/standards in their time, only later to become vindicated and sometimes becoming Nobel Peace winners! That is why I am being open minded about this and my own medical history regarding the Lyme ALS connections. I pray and hope that we get more published research on this very thing.