-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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Misdiagnosed Patients Deal With Truth About Their Diseases Jan. 31, 2003
Science Specialist Ed Yeates reporting
This story is a special report about people who have suffered through an extremely painful and unusual situation. And all because of a disease they were told they had, but really didn't. And another disease they DID have, but never knew.
Toby Lee was told two years ago he had Parkinson's disease. But now, a University of Utah physician at this clinic in Tooele is treating him for something else.
His is just one of several hard to believe stories about people who may have suffered the fate of being misdiagnosed.
Toby Lee had difficulty getting dressed, and doing things such as buttoning a shirt. His face and hands began trembling. He fell down stairs at work.
"I was losing feelings in my legs and that was causing me to drag or favor one side from the other," Lee says.
A neurologist first diagnosed his condition as "Stiff Man's Syndrome."
So, it was back to more specialists and more tests. Finally, he was told he had young onset Parkinson's disease - a diagnosis that would dramatically alter his life.
"The picture that we were painted as far as that went is that I would get to the point where I couldn't get around," Lee says.
Toby began making decisions based on what he thought would be the outcome.
"Trust funds for the kids, to ensure college, to set up wills and power of attorneys, somebody to help Missy when I couldn't make the decisions," Lee says.
For the past two years, Toby has been taking medications for Parkinson's.
"We have five that he had to take every day so each month, we were refilling that," says Toby's wife, Missy.
His own doctor, Jeffrey Lee - no relation incidentally - had no reason not to believe the original diagnosis.
His patient had classic symptoms of Parkinson's.
"The shuffling in his gate, what we call cog wheel rigidity where his arms would just move like this when they come up and down," Dr. Lee says.
Then something happened. Based on his exposure outdoors here and out of state, a friend -- not a doctor -- suggested the possibility of Lyme disease - a bacterial illness caused by a tick bite.
His blood test, sent to a specialized lab in California, came back overwhelmingly positive.
"And the test results came back and I couldn't even believe it. It just wasn't possible they could miss something that big," Lee says.
A big revelation for Toby - and apparently for others as well.
Lyme disease, when diagnosed correctly, is a great imposter, mirroring symptoms of many illnesses.
Shelly Wolf thought she had multiple sclerosis. But while back East with her parents, a physician there recommended a test for Lyme disease.
"And it came back positive and he said, 'you definitely have Lyme. You don't have M.S.'" Wolf says.
Like Toby, Shelly never remembers getting bit by a tick. But she's spent a lot of time outdoors here and in her hometown back East.
"We go up to the mountains and we go to the lake and we go camping in the desert, and so I've definitely had the opportunity," Wolf says.
Years of living with something they thought they had, when that was not their fate at all.
For Toby, Shelly and others we talked to, it's been a bittersweet experience.
"A lot of anger, very upset, thinking that I had lost time, time that I cannot ever get back with my kids, with my wife, pieces of life I cannot remember," Lee says.
How is Toby doing with his new treatment? And what about the controversy itself over Lyme disease? More on that and a look at some other patients fearing a misdiagnosis Friday on Eyewitness News at 10 p.m.
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
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posted
Very little in the medical literature about this. Hubby was told by 13 of 14 neurologists that his tremors were not Parkinsonian (too fast, he shook in his sleep etc etc.). The 14th neuro diagnosed a "bizarre movement disorder" caused by neuroborreliosis.
However, when anticholinergic drugs were tried (often the first treatment for mild Parkinson's) they came close to paralyzing hubby. He developed the classic Parkinsonian shuffle-step.
Parkinson's is caused in theory at least by not enough dopamine. Acetylcholine makes your muscles move and dopamine makes them stop. One is the gas and the other is the brakes.
Anticholinergics decrease acetylcholine to balance the 2 neurotransmitters. Includes such drugs as Benadryl and Artane.
L-Dopa increases dopamine in an attempt to achieve balance as well. Sinemet (a combo drug which includes L-Dopa) did not help hubby either. As it was a low dose don't think it did much either way.
Lyme patients do not have enough acetylcholine. The Lyme bacteria and also babesia use this lipid -- rob it from the brain and myelin sheath that protects nerves.
It is kind of like ADHD kids who look hyperactive, but require a stimulant (Ritalin) to calm them. Lyme patients with tremors can take acetylcholine and it calms their tremors -- the exact opposite of what would logically be expected to happen.
Oral acetylcholine probably will not help -- the P.K. protocol (a combo of IV phosphatidylcholine and IV glutathione) can be beneficial. The IV glutathione alone helps many Parkinson's patients and some Lyme patients as well, but for hubby it also required the IV Phosphatidylcholine to cause a significant decrease in tremors.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Many people originally diagnosed with Parkinsons have Lyme as one of the underlying causes. It is always, I know of no exception, caused by multiple factors. When all these, including Lyme Disease, are addressed, improvement and cure can happen.
My husband's experience was exactly like that, and no improvement was evident until all toxicities and all infections were addressed. That included heavy metals, chemical, dental infections, viral infections, parasites, structural problems, electromagnetic stress exposure, and of course Lyme treatment. Again, all the patients with Parkinson symptoms that I met over the years had most of these to deal with before they could get better or well.
Take care.
[ 24. May 2006, 01:28 AM: Message edited by: GiGi ]
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
Thank you all for taking the time to reply. I am traveling and may not be able to reply again until next week, so would appreciate help in keeping this thread visible to encourage more responses.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
I would very much appreciate if we could keep this thread on topic (links between Parkinson's and Lyme).
This person is very ill, and I am looking for any information which I can provide to help the family decide if they want to pursue evaluation for Lyme.
I would like to be able to send them directly to this thread, but won't be able to do that if they will then have to wade through information that is not directly relevant.
I appreciate everyone's help, but please can we stick to the topic and skip the rants.
[This post was made in response to a post that has since been deleted, but I am leaving it here to help keep things on track so that I can provide this person and his family with information that will be the most useful.]
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
My llmd has been treating Parkinson's patients, especially those who don't respond well to the standard Park meds, with abx.
The lady I sent to him did make some improvement before she died.
Her obit was listed on this site, her cause of death was listed as Lyme.
Posts: 1572 | From Pa | Registered: Jun 2001
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Jill E.
Frequent Contributor (1K+ posts)
Member # 9121
posted
Hi Suzanne,
I am going to through one more tidbit into the mix here.
If your friend truly has Parkinson's, not Lyme, there were some studies showing that very high dosages of Coenzyme Q10 helped with Parkinson's.
I'm trying to do this from memory, but had researched this for a family friend.
I believe the information was on the Life Extension Foundation website at www.lef.org. I believe the dosage of CoQ10 was about 1,200 mgs. a day.
While I don't have personal information about Parkinson's and Lyme, I have directed information to friends/family of a few ALS patients that they might have Lyme. I forwarded a press release from ILADS about a doctor who had been diagnosed with ALS that turned out to be Lyme. So I would think that a similar situation could exist with some Parkinson's patients.
Take care, Jill
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
There are also some reports out that Parkinson patients are responding well to IV Glutathione treatments. They supposedly leave the doctor's office without any shaking. The problem is they need another treatment in 3-4 days because it wears off. And the treatments are not cheap.
Best, Karen
Posts: 1686 | From Maine | Registered: Jun 2004
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
This is a medical study on a parkinsons patient with Lyme:
I personally have Motor Tic Disorder that was caused by Lyme. It's more like Tourrette's than Parkinson's, but I do get shaking in my right arm and sometimes in my legs.
Additionally, although I am in no way saying he has Lyme, Michael J. Fox did publicly announce he was treated for Lyme during or right after the filming of Doc Hollywood. It was perhaps one of many triggers that led to his Parkinson's.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
As GiGi pointed out, there are numerous things that can cause a Parkinsonian tremor. Heavy metals (mercury toxicity from dental fillings) is one.
Hubby actually had this problem before the tickborne illness. Tremors were 90% gone as a result of chelation with DMPS and other oral chelators prior to Lyme symptoms.
Mercury also interferes with acetylcholine but in a different way than the Lyme does.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Wish to make this understood. Parkinson symptoms are not only brought about by heavy metal toxicity, as well as of course many other xenobiotics, but a major problem are dental toxins, i.e. the toxins that are put out by bacteria growing in root canals, cavitations, old toxic wisdom teeth sites, etc. The toxins are referred to as thio-ethers, thio-ethanols, mercaptans, and are the most toxic materials known to man and can move anywhere in the body causing immense damage.
Heavy metal toxicity and/or mercury toxicity becomes minor when compared to these toxins. It is the toxins put out by dead tissue --- that's why we embalm dead bodies today.
If you are not certain about the health of your mouth, do some reading up on the subject. It has put many a person in a wheelchair and worse.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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posted
With thanks to all who have taken the time to respond; bumping up for more.
-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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-------------------- Suzanne Shaps STAND UP FOR LYME Texas (www.standupforlyme.org) (Please email all correspondence related to protecting Texas LLMDs to [email protected] with copy to [email protected]) Posts: 977 | From Austin, TX, USA | Registered: May 2004
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posted
suzanne, check treepatrol's newbie links by ART DOUGHERTY. he had many links there about parkinson's/lyme!
he took down a lot, but there was still other good things there!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
My beother-n-law was dx with Post Traumatic Parkinson's Disease when he was 29 yrs. old.
Apparently he had been mugged a couple of times, which caused him to lose conciousness.
He saw the premier MD in Houston, Tx for movement disorders who thought he was showing symptoms for sympathy.
Dx. with Parkinson's at LSU med center here in New Orleans.
After being dx with Lyme and realizing the possibility that he could actually have it, prompted me to call my sister asap.
You see, he has been an avid hunter all of his life. Out in the woods, fields, etc.
She is a RN. Told me he had a Lyme test and it was negative.
Gave her tons of ino, but they just don't seem at all interested.
Told her about Igenex, etc. and how serological testing is not what a dx of Lyme is based on.
He goes up and down with symptoms. Sometimes can't walk. Sometimes can't talk. Can't remember things, etc.
In my heart of hearts, I believe he may have Lyme, but I guess they feel better with a Parkinson's dx.
By the way there is no link in his family, and Parkinson's Disease is known to run in families.
Oh well......I'll keep gently suggesting and praying.
He is now 34 and they think he will be wheelchair bound in the next 10 years. What a prognosis.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I added some pd links to page 3 newbie links.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
imanurse, specifically who is the webmaster o the above web site? got lots of possibilities in expanding it! a good start.
took a quick look at it but since it's such small font, can't read it without straining my eyesight! they didn't have LOW vision folks in mind when it was created.
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Dr. O in Exeter CA who is no longer treating from what I just heard put a few Parkinsons diagnosed people on longterm IV Rocephin and one woman I spoke with on the phone- this was years and years ago- was walking normally for the first time in YEARS of being bedbound!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! But the local Parkie people told each other and he had a BUNCH of Parkies at once all of a sudden!! And not all did as well as she did!!!! Still, when she called me and I heard about what he was doing I was just so impressed with him!!! Too bad he is no longer treating!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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