Case report D
Year of birth: 1951
PD diagnosed: 1999
Symptoms: mild until neck operation 2009 then rapid deterioration, Bell's palsy and eczema July 2010
Gait unsteady, poor balance, walking stiffly on tiptoe with support, speech impaired and depression, severe constipation (common PD symptom).
2010 (July) Started on PIPmix, B12 and probiotics
One month later (August) Feels better, steadier on feet, better balance with armswing when walking, constipation cured, back in his workshop able to work on car. Speech more normal.
Takes his wife breakfast in bed upstairs carrying tray with no spillage.
(December) Reduced prescribed medication by 50% (his decision), has more energy. Wife says he spends all day in workshop (keeps and maintains 5 old cars)
2011 (February) Walking well, more energy, good balance, delighted.
(May) Servicing all 5 cars using pit in garage, walking well, feels fine
(July) Digging foundations for extension to workshop!
Hi, your story is interesting, I do believe there is a lot we can do to improve our health/symptoms but it's massive trial and error to find out what might work for each individual...can you say what is your doctor's view of your experince, or the views of any alternative health professionals involved, or your explanation / thoughts around this?
Sounds like he took a long time to get over the operation.
Oh, and welcome back chewexpertor or have I missed recent postings?
Whats PIP mix
chewexpert, who pops up at regular intervals, has some interesting ideas on diet and pd. i have to admit that his theory is gradually seeming more plausible to me and i am thinking of trying it. google 'brainhelp pip' and you will find it. the site is owned by andrew carmichael, a retired dentist. there have been other reports of gut bacteria being involved in pd.
it includes palmitoyl ascorbate,but i skipped chemistry so i can't say anything about that.
i would be VERY interested to know how mr carmichael is doing personally.
I do not have PD - yet? Which of us knows. My kids just think I am old = decrepit!
The case quoted is one of those from a series of 68 PwP running or having taken part in the informal trial of the Parkinson's Improvement Programme over the last three years.
Others have done just as well but it must be said some have found no benefit.
It requires a formal trial but no neurologist has yet been bold enough to take the lead in it because they cannot believe that simple food additives can improve a condition that drug companies have failed to crack. Many in the informal trial have reported return of sense of smell which the neurologists refuse to believe. Reduction of pain, better sleep, better walking, return of smile, ability to do buttons/zips all reported.
Improvement in non-motor symptoms and an apparent slowdown in the expected PD decline over years are believed impossible and yet these have been shown to happen. All this with no apparent side-effects.
A submission to the NHS research fund 'Research for patient benefit' is well on the way to completion - all it needs is a courageous neurologist - know one? The thought of a retired dentist leading neuro research is a joke too far for the establishment.
I agree that Parkinson's may well start in the gut and that building up the bodies natural "fauna and flora" ie the millions of good bacteria that live in the gut and help to maintain our health, might well be helpful.Where I take issue among other things is the inclusion of commercial products , such as a yogurt that has a sugary fruit syrup in the programme.
Hold on people!!
Where has this connection of bowel contents and PD come from?
Work by Drs Dobbs showed that cleaning up Helicobacter could sometimes improve PD. see website brainhelp.info for development of this theme
for some reason i always assumed(note the first three letters) that you were a pwp.
I can imagine the difficulty you would have being taken seriously among gods gift to humanity. i have a very individualistic neuro here in oz, perhaps she might be interested.
it seems to me, as an interested amateur, that the differences in cause, especially between early and late pd, that there may be at least two different diseases with the same phenomena. so it would be suspicious if you had 100% success.
some pd seems to start in the nose (really!) some in the gut and some god knows where. its a bit of a mess. but its darkest before dawn. i really feel (note the irrational verb)that the answers are incredibly close, if not the cure.
can you explain why palm derivitives in particular???
Palmitoyl ascorbate was chosen because it is 100% lethal to H pylori in vitro (untested in vivo for this)and it is lipid soluble. It is also a powerful anti-oxidant (and angiogenic) and gets into brain 8 times more efficiently than plain water soluble Vit C.
am confused - bacteria can't get into the brain can they?
It is not necessarily the bacteria themselves that travel but your gut can absorb antigens produced by the bacteria (many of the species not even known) and also viruses, prions (many sorts). Some bacteria are blamed for causing gut cancers. The effects of chronic gut inflammation alone can influence PD. If any part of your body is damaged the rest of the body including brain is put on alert by circulating messenger molecules called cytokines such as TNFa. In defensive mode neurons do not do the normal job but concentrate on defence - therefore the transmission of nerve signals suffers. Production of amyloid or synuclein is a defensive measure - in Alzheimers it has been shown to 'entomb' HSV 1 virus particles (Wozniak and Itzhaki 2011).
While this is going on you suffer the symptoms of Parkinson's.
Eventually some nerve cells die under the strain but many can be rescued. That rescue is what the Parkinson's Improvement Programme sets out to do. Some users have shown remarkable recovery even ten years after diagnosis.
so you are saying pd is an immune system reaction gone wrong?
if so could this be triggered by various infections (including viruses?), H pylori being only one?
would your treatment therefore be limited to those cases caused by gut infections?
would it have an effect on a case triggered by a virus such as varicella zoster?
An immune system failure maybe. The Parkinson's Improvement Programme does not work for everybody but it works for enough people to make it worthwhile trying it as it seems to do no harm. It does not seem fair to deny it to all just because we don't know exactly how it works or in what specific circumstances it works best.
i think you may have misread my intentions, i agree that it is not necessary for a treatment to be effective for everyone to be useful or to fully understand how it works. Most treatments for pd seem to fall into one or both of those categories.
I would like to try your plan but am a little nervous of taking palmytol sulphate without checking with a doctor or pharmacist.
i mean ascorbate!!!
Check by all means but it is a recognised food additive widely used in industry as an anti-oxidant E - 304. It is used to keep prepack meat staying pink, in drinks and in salad packs among other things. More than 60 people have been taking it at 1 - 2 gm /day for up to 4 years with no noted ill-effects in the informal PIP trial.
You may find it listed as ascorbyl palmitate or as E-304 or as palmitoyl ascorbate or as 6-o-palmitoyl-L-ascorbate. These are all the same thing.