Parkinson's Disease Tulip


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Old 10-07-2008, 09:46 AM #1
Virginia Therese Virginia Therese is offline
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Default Off-label medication relief of PD symptoms

Good morning, everyone...I have not posted in a very long time, but I read the messages, here, regularly.

I would like to ask if anyone has ever experienced relief of a PD symptom while taking an antibiotic? My pwp has been taking an antibiotic for an infection for 5 days, now, and her tremor (her predominant symptom) SEEMS to have disappeared! It almost seems beyond coincidental. I wonder if this could be considered to be an "off label" use (I believe that's the term used when a medication geared to treat a specific ailment results in relief of another symptom for which it has not been specifically prescribed. It seems to me that there has been some speculation about viruses having some connection to PD (not really certain about this). I would appreciate any input that you may have about this.

Thank you...it's good to be back. I always know where I have to go when I have a question related to PD.

Therese
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Old 10-07-2008, 05:18 PM #2
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Default therese

There have been numerous "anecdotes" about this. Unfortunately, in the medico world, "anecdote" means "silly patient story" so they are dismissed.

A couple of years ago, Ron Hutton ran across a letter in an "Ask the Doc" column from a PWP who had gone to the emergency room with an abscessed tooth and had been given Penicillin VK. His symptoms totally disappeared within a couple of days and returned a couple of days after he ran out. The doc dismissed it out of hand.

The tetracyclines have long produced such stories, as well. In fact, a member of that family called minocycline has a good bit of research published on it.

There are a couple of questions to be answered. What is going on? The first thought is that some bacterium is causing the symptoms, but, if so, why don't more antibiotics produce results like this? Why hasn't someone been cured accidentally?

I suspect that the answer is a little more interesting. As I have posted from time to time, I believe the theory that we are hypersensitive to the bacterial endotoxin lipopolysaccharide (LPS) due to our having encountered it in the womb. Now as adults, the barest whiff of LPS wafting through our system makes our brain's microglial cells go berserk and start pumping out cytokines which, uncontrolled, do great damage in the long term and screw up our neurofunction in the short term.

If it isn't beating back bacteria, then what is the antibiotic doing that makes a difference in PD? Glad you asked!!

These antibiotics have another property of note- they bind LPS and render it harmless! That, in turn, allows the microglia to stand down. The antibiotics are acting as anti-inflammatories.

Some other things that support this- Remember how ibuprofen offers protection bt aspirin does not? Ibuprofen binds LPS but not aspirin.

And then there is cholesterol. Despite what Big Pharma wants us to believe, low cholesterol increases one's chance of getting PD. One reason is probably the fact that cholesterol is a component of the neuronal wall. But there is another- the body handles LPS by binding it to cholesterol for transport to the liver.

And, as Paul Harvey says if they pay him enough, "That's the rest of the story..."
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-08-2008, 01:57 PM #3
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Default Thanks, Ron

...for your response to my question about off-label relief of PD symptoms...and yes...I AM glad that I asked!!!!!!
You have such a great ability to explain/describe things in technical terms, but, believe it or not, I understood what you said!!!! LOL Interestingly, I think, was the fact that you mentioned the Penicillin VK. Doreen is taking Amoxicillin (same family, right, Ron?)...both within a classification of "older medications" which, quite frankly, I feel work better and are safer than many of the newer medications that are "rushed" onto the market these days. Of course, Doreen's response to all this was: "How long, though, can one continue to take an antibiotic?" I told her that something like this might fit into the category of a type therapy (cannot recall the exact name right now)...that is used wherein a person takes a specific antibiotic for a certain length of time; then, the antibiotic is changed and taken for a length of time, etc. You probably know the techinical term for this, Ron!!! It just escapes me at this moment. At any rate, we'll see where this might go...and thank you again, Ron, for your response. I appreciate it very much.

Therese
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Old 10-08-2008, 04:40 PM #4
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Default one big happy family

You know what I like about this place? It's just like home!
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-09-2008, 03:58 AM #5
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Default Mix up!

Hi Theresa (and Rick)
I can't bask in the glory any longer!! LOL
Theresa, it was Rick who replied to you not me, but then what you probably don't know is he is wearing my hat in his photo, hence the confusion.
Rick and his wife Wanda, came over to Merry England and stayed for an enjoyable 2 weeks with us. The photo he uses is part of a photo of him and I sitting in our garden. If I could find the photo, and then find how to include it in my post, I would let you see it.
Best wishes
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Old 10-09-2008, 06:31 AM #6
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Lightbulb this reminds me of the PANDAs issue.

When some people as children are infected with Strep, they make antibodies to the bacteria which when the infection is over, then attack the brain (it is thought there is a genetic sequence on the antibody that resembles something in a brain structure) which then malfunctions and gives TOURETTE'S. (this is similar in mechanism to thoughts on how Type I diabetes occurs...that autoimmune complexes to Bovine insulin in milk products induces reactions to human islet cells--Type I often occurs after a triggering infection).

What is Tourette's? A MOVEMENT disorder.
And typically the treatment involves long term use of a pencillin derivative to keep the Strep at bay (we all have bacteria in us, which are in low level amounts, that our immune system is successfully dealing with). So these kids take Penicillin VK or Amoxicillin or if allergic cephalexin.

So if an antibiotic works, it may be MORE than affecting inflammatory cytokines, it might be a form of ADULT Tourette's? It is something to think about.
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Old 10-09-2008, 07:20 AM #7
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Default We were often mistaken for brothers

You must admit, the resemblence is uncanny!



Quote:
Originally Posted by Ronhutton View Post
Hi Theresa (and Rick)
I can't bask in the glory any longer!! LOL
Theresa, it was Rick who replied to you not me, but then what you probably don't know is he is wearing my hat in his photo, hence the confusion.
Rick and his wife Wanda, came over to Merry England and stayed for an enjoyable 2 weeks with us. The photo he uses is part of a photo of him and I sitting in our garden. If I could find the photo, and then find how to include it in my post, I would let you see it.
Best wishes
Ron
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Off-label medication relief of PD symptoms-rick-ron-jpg  
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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"Thanks for this!" says:
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Old 10-09-2008, 07:56 AM #8
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Default but back to the topic

I have to wonder if the usual action of an antibiotic would have that effect that quickly, but who knows.

Regardless of the mechanism at work, it should be darned easy to test some of these with the help of just our own GPs. I will be seeing mine in the spring and should be able to get his help. In the meantime, if anyone wants to do a quick-and-dirty experiment,the ones that I have heard anecdotes about:
Penicillin VK
Tetracykline
Minocycline
Remember that the claims are symptom relief (possibly total) in just two days! Even a conservative doc should be comfortable with that.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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Old 10-09-2008, 12:56 PM #9
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Default Sorry about the mix-up

...but, you know...you're both so good looking that it was easy for me to make a mistake!!! ..and the hat...certainly a way to confuse me!!!! lol...at least I got the first letter of your names correct..."R"...thanks for your responses.

Therese
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Old 10-09-2008, 02:22 PM #10
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Lightbulb I do think it matters...the mechanism.

Minocycline and tetracycline are hard on the body. Over time
they cause significant dysbiosis of the GI tract which may even lead to C.difficile infections/colitis.
They also deplete a boatload of nutrients..a very long list.

The Penicillins are easier to tolerate. Penicillin VK has a narrower spectrum of action (but it does hit Strep) and the fewest side effects over time. Amoxicillin may cause GI problems, Candida and colitis with time. Same with cephalexin.

Luckily for PANDAs patients the pen VK is often enough. But when you don't know exactly what you need to kill off, well, choice of drug then becomes more difficult.

Minocycline and tetracycline and doxycycline are all bacteriostatic--they do not kill only prevent spread.

The penicillins do kill bacteria.

The tetracycline family has been used in the treatment of rheumatic disorders for their anti-inflammatory actions.

If anyone here decides to go the minocycline route, then PM me and I'll get you the list of nutrients you need to attend to.

Also plan on using a good probiotic and/or a good yogurt daily, with any long term antibiotic. Stay away from the fluroquinolones..they are CNS toxic.
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
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