I discovered recently from a post on this site that there was a suggestion that PD travelled from the gut to the brain so I looked for research evidence – with pretty stunning results. Since about 2010 research into microbacteria has vastly increased the understanding of PD.
I feel that at last I have an explanation for all my symptoms and, even better, an avenue which holds out some hope for alleviating them. I wasn’t sure whether to post about it – I may have misunderstood everything - but this new approach to understanding PD deserves to be recognised so I’m spreading the word. I’ll keep it as short as possible! And I’ll post relevant links at the end.
Very briefly and massively simplified (but not I hope to the point of being meaningless) this is what I have found out.
Re populating the bowel with healthy bacteria is an extraordinarily successful new NICE approved treatment for drug-resistant C. Difficile (Very nasty food poisoning). People with PD who have received this treatment report, anecdotally, that PD symptoms improve.
A Scandinavian PD patient with severe constipation was found to have high levels of H pylori. When this was treated with very high doses of antibiotics the constipation disappeared and PD symptoms improved very significantly and permanently.
Research suggests that PwP have 'the wrong' balance of microbes in the intestine and that this will go back years. Raised levels of H. pylori are more common in PwP than in the general population. H. pylori is associated with inflammation. Other microbes are found at lower levels than normal in PwP .The imbalance of microbes cause the bowel to be less effective, hence many PwP have histories of constipation/IBS long before diagnosis Gastroparesis (sluggish digestive system, bloating) is a significant problem for PwP.
The bloating of the stomach and abdomen together with the ‘hostile’ internal environment caused by microbial imbalance damages the vagus nerve. This is a nerve that ‘travels’ all over the body taking messages to and from the brain to all the major organs and all areas. If it is damaged the messages it takes will be scrambled.
". . . Vagus nerve relays motor nerve impulses to different muscles such as those of the tongue and voice box. It also receives sensory impulses from throat, organs of abdomen and chest, as well as ear. The vagus nerve also supplies visceral nerve impulses to abdomen organs, chest organs, and glands of throat. It is among the longest of cranial nerves. The main functions of vagus nerve are breathing, sweating, speech, monitoring and regulation of heartbeat, and keeping larynx open when breathing.It also informs the brain about food that’s being ingested and the one which has been digested. Vagus nerve plays a major function in emptying food from the gastric region. When there is damage to vagus nerve, it causes gastroparesis— a condition where there is loss of muscular function in intestines and stomach.’ (Psychology Today May 2015)
Sounds familiar? ALL my ‘non-motor’ symptoms – including the massive sweats I get as I wear off (hyperhidrosis) suddenly make sense; ‘wobbly voice’, running out of breath half way through a sentence, palpitations, vertigo – all due to my vagus nerve not doing its job properly.. And the severity of the bloating is explained by a negative feedback loop – as I get more bloated more pressure is put on the vagus nerve so it’s even less able to send the right signals to the digestive system so I get even worse gastroparesis – until eventually the whole system packs up.. My two most troublesome symptoms are massive bloating which by evening makes it impossible to do anything except lie flat and two to three episodes of severe hyperhidrosis every day – necessitating a complete change of clothes each time. No doctor or nurse has ever been interested in discussing these with me and have treated them them as irrelevant to PD. Now it’s obvious what’s happening. So much is falling into place I can almost hear the ‘ker-chings’.
The research findings support the idea that 'correcting' the microbial population in the bowel improves the functioning of the digestive system and also the functioning of the vagus nerve; hence the lessening of the PD symptoms. At the very least it could prevent further damage to the vagus nerve. So far, the way that the vagus nerve actually causes the brain itself to become ‘Parkinsoned’ , to coin a phrase, is not understood.. However, if changing the microbial balance improves PD symptoms surely we don’t need to wait until we fully understand the transmission method before introducing it as a therapy.. (Nobody knows how ECT works but it can be a very useful therapy for severe depression)
If by changing the make-up of my microbe load I can alleviate my terrible bloating and constipation I would jump at the chance – and if it relieves some of the other PD symptoms I’d break into song. However, there is one thing that may put people off – the re-populating of then gut Is done by faecal transplant – not quite as disgusting as it sounds but still not something perhaps to be discussed over breakfast.
Unfortunately NICE has licensed the procedure only for C Difficile at the moment. It is I think available in the States and there seems to be one clinic in the US offering it privately as a general cure -all but I would guess there needs to be more work done on using it specifically for PD. This is an avenue I’m going to pursue. In the meantime I’m going to ask my GP to test my level of h pylori – a very simple breath test.
I really think that those of us in the UK should be shouting about this gut bacteria-vagus nerve – brain – PD relationship . It makes sense and offers so much hope and is so less invasive and potentially hazardous than the DBS/apo pump/stem cell route which is offered at the moment. At the very least I would expect Parkinsons UK to be making significant funding available to scientists to investigate and to run clinical triaIs asap. If trials are not already taking place in the UK I am prepared to make a very big noise to get things happening . And I ‘d happily be the first guinea pig!
Has anyone else heard about any UK trials or any UK hospitals or clinics using this therapy?
Below are a few links – not exhaustive. Just google ‘Parkinsons and gut bacteria’ and sit back – you’ll be flooded with information.
Useful book: Follow Your Gut . Rob Knight published by TED 2015 ted.com/books
Wow. Pen you are on a roll :). Hope you get some good outcomes! You may also like to investigate Braaks theory which is gaining popularity . A few years back Kings in London was doing h pylori research. Don't know what became of it.
Braak has. a ‘dual-hit theory about idiopathic Parkinson's disease, . He said an unknown pathogen like a slow-virus enters the nervous system through both the nose and the intestine and eventually moves to the brain.
Good to hear from you. Yes I did come across Braak's theory - which seems to make lots of sense. I wonder if the microbial imbalance is a result of the pathogen or whether a pre-exisiting imbalance creates a 'friendly' environment for the pathogens to breed. Either way if changing the microbes improves symptoms I'd give it a whirl. I didn't pursue the Braak theory - I find that when I am researching PD I have to balance finding out things which could be useful against finding out things which are horribly depressing because I can't do anything about them. It's a constant tension between scientific enquiry and psychological health!
The current theory (so-called Braak's hypothesis) is that the earliest signs of Parkinson's are found in the enteric (or gut) nervous system, the medulla and in particular, the olfactory bulb, which controls your sense of smell. Under this theory, Parkinson's only progresses to the substantia nigra and cortex over the years. This theory is increasingly borne out by evidence that non-motor symptoms, such as a loss of sense of smell, hyposmia, sleep disorders and constipation may precede the motor features of the disease by several years. For this reason, researchers are increasingly focused on these "non-motor" symptoms to both detect PD as early as possible and to look for ways to stop its progression.
I'm absolutely sure this is the most likely route to understanding, treating and ultimately curing/preventing Parkinsons. You could say I have a 'gut' feeling that the are on the right lines.
Boy isn't THAT the truth ! (the constant tension between scientific enquiry and psychological health! I really think the people who bury their heads in the sand "and don't want to know anything" simply wish to stay in a state of denial. Honestly I don't want to dwell on the dismal... but I hate operating in the dark.
There is precious little to like about having PD.
There seems to be so much that is discouraging. Especially as there are these "promising drugs that lead to nowhere because research and followup is not done. What happened to LDN (low dose Naltrexone that showed such promise 15 years ago.?* Wither Nilotinib from Novartis? (Such incredible success with 10 of 12 patients. Then nothing). Uridine's ability to reversed the genotoxic effect of Levodopa and Carbidopa (tested very successfully in mice, no followup). Most recently the apparent application of simvastatin a common STATIN readily available and cheap - appears to serve a neuroprotective function and may possibly stop advance of Parkinsons altogether.
A fundamental obstacle in finding effective treatments for Parkinsons lies in the fact of the economics. Research organizations and the Pharmaceutical Industry are looking for the silver bullet that is going to make large profits first (and foremost) and cure the disease, second. Drugs that are currently available and often cheap (like LDN) that may be in used for treatment of other maladies and can be prescribed "off label" are off the table.
Why investigate LDN at the cost of millions of dollars if its currently available for less than a dollar a day? In the United States, its increasingly common for unscrupulous companies to buy up the rights to manufacture drugs (particularly those that treat rare cancers) and then boost the price of those drugs 300% in one year. Why should any self respecting Pharmaceutical company be interested in a drug that generates only a few hundred dollars per year per patient.... when there are opportunities to make $100,000 per patient?
There appear to be many "causes" of Parkinsons... probably a lot more than exposure to Agent Orange, pesticides, genetic history. bacteria in the gut and family genetics. My answer for treatment once PD is diagnosed lies in creating as neuronally nurturant environment as possible ( wisking those Lewy Bodies away as quickly as possible and keeping those cellular mitochondria chugging away ) and ultimately by correcting the "misfolding" of the Alpha synnuclean molecule (which is no easy task).
I hold out hope in the area of "maintaining as neuronally nurturant environment as possible and not holding my breath as far as a cure is concerned. It is just difficult at times to cope with the "exciting discoveries" that pop up every six months and then hearing . . . nothing.
I heard from The Cure Parkinson's Trust recently that they are hoping (with an American partner) to start Clinical Trials on Nilotinib in 2017.
Like Pen11, I lie the sound of a Neuronally Nurturant Environment and would like to know more?
I have recently entered my 14th year since diagnosis and have taken the bull by the horn and subscribed for daily (30 minutes} of intense exercising to get me stronger again (I lost over 30 lbs since having a brain op as part of a clinical trials program - which did not work out for me - and have developed freezing and falling
As part of this regime, I a trying to get an appointment with a dietitian who is knowledgeable about PD to best figure out how to compliment the muscles I must surely be developing !!
The answer to what? is the question. About 50% of humanity harbor H. Pylori to begin with.
It's no surprise that PWP have different gut bacteria - PD dries out the gut from one end to the other. Let's not confuse cause and effect!
I can buy that eradicating H, Pylori might improve absorption of meds, but this a far cry from demonstrating they are a cause of PD.
That said, it is possible PD could begin in the gut. Interesting study you cited re protection from PD from severing the vagus nerve. The idea that a pathogen might travel up the vagus nerve is interesting and worth investigation. However, the stats fall short of conclusive:
onlinelibrary.wiley.com/doi... of PD was decreased in patients who underwent truncal (HR = 0.85; 95% CI = 0.56–1.27; follow-up of >20 years: HR = 0.58; 95% CI: 0.28–1.20) compared to superselective vagotomy. Risk of PD was also decreased after truncal vagotomy when compared to the general population cohort (overall adjusted HR = 0.85; 95% CI: 0.63–1.14; follow-up >20 years, adjusted HR = 0.53; 95% CI: 0.28–0.99)."
Note that the confidence interval (CI) of the hazard ratio (HR) includes values >1.
Compare to exposure to pesticides which results in hazard ratios in the neighborhood of 10 for acquiring PD.
I agree - I don't think anything is going to be conclusive for a long time! But it's always worth investigating a relationship between variables though I agree it's very dangerous to assume cause and effect without an impressive array of experimental data. On a pragmatic level if I can make sense of an explanation for why I feel half dead most of the time and if that explanation also includes a (relatively) low risk suggestion for feeling better (as opposed to invasive brain surgery) I'm inclined to give it a try. If nothing else the placebo effect would be welcome!
Yes more research has to be done but the researchers are on the right track. Discounting pesticide exposure, which is the cause of my parkinsonism - since I know the cause it has a lower case p and an ism on the end, bacterial involvement is the best hypothesis going. Forgive the length of this posting....
Consider Parkinson's disease is genetically related to tuberculosis and the following study shows there is an increased risk for getting PD after contracting TB:
Association Between Tuberculosis and Parkinson Disease
Leprosy is caused by Mycobacterium leprae and the putative (though to be) cause of Crohn's is Mycobacterium avium subspecies paratuberculosis which is called paratuberculosis or MAP (for short).
Dr. John Herman Taylor, an English doctor, has been studying MAP in relation to Crohn's for decades and has developed a therapeutic Crohn's disease vaccine which he is trying to get funded:
Nocardia asteroides is a bacteria closely related to Mycobacterium tuberculosis because it is a bacteria with fungal properties. Myco in greek means 'fungal' and about 20 yeabrs ago researchers discovered Nocardia species are not fungus's, they are bacteria. Dr. Blaine Beaman, recently diseased from PSP, attempted to show nocardia species caused Parkinson's after discovering nocardia infected patients who had a parkinsonism syndrome. The following is one of his experiements:
L-dopa-responsive movement disorder caused by Nocardia asteroides localized in the brains of mice. ncbi.nlm.nih.gov/pmc/articl...
Rhodoccus aurantiacus is a species of bacteria which too has fungal characteristics and has been shown to induce parkinsonism in mice. Like nocardia species it was thought to be a fungus until about 20 years ago:
Movement disorders in encephalitis induced by Rhodococcus aurantiacus infection relieved by the administration of L-dopa and anti-T-cell antibodies
Streptomyces is also a bacteria with fungal properties and it produces a chemical toxic to neurons and has induced parkinsonism in worm studies. Nocardia asteroids also produce proteosome inhibitors:
Mitochondrial dysfunction, oxidative stress, and neurodegeneration elicited by a bacterial metabolite in a C. elegans Parkinson's model. ncbi.nlm.nih.gov/pubmed/244...
Clostridium difficile can cause constipation in PD patients thus worsening their motor symptoms. Dr. Borody of Australia has successfully treated Parkinson's patients with faecal microbiota transplants. 3 PD patients had the operation and their symptoms went away to the point where other neurologists could not detect their symptoms.
"While Dr. Thomas Borody was experimenting with patients who were afflicted by both CDI and Parkinson's disease, he realized that after fecal therapy the symptoms of Parkinson's in his patients began to decrease; some to the point that the Parkinson's could not be detected by other neurologists."
MAO inhibitors like Deprenyl/selegiline and Azilect/rasagiline are common therapy for PD. It just so happens that MAO inhibitors were initially developed to treat TB:
The number ! TB drug is called isoniazid and it is an MAO inhibitor. The number 2 TB drug is called rifampicin and it has proven to be neuroprotective in multiple PD studies:
Cycloserine, brand name Seromycin, is a second line TB antibiotic and has been shown to neuroprotective in a PD model:
Potential of D-cycloserine in the treatment of behavioral and neuroinflammatory disorders in Parkinson's disease and studies that need to be performed before clinical trials.
Mycobacterium tuberculosis, leprae, MAP, nocardia asteroides, Rhodoccus, Clostridium difficile and streptomyces all have peptidoglycocan in their cell walls. It is a fatty, lipid, polymer like substance which is difficult to penetrate and protects the bacteria from antibiotics. It is also is a risk factor for PD:
All the above bacteria are characterized as Gram positive and Gram negative bacteria are associated with PD too. Lipopolysaccharides (LPS) are a toxin in the cell wall of bacteria like E. Coli and Salmonella. LPS is one of the standard models used to study drugs/supplements to see if they can protect dopaminergic neurons. There is a case of a lab assistant who had a cut in her thumb and 10 mcg of LPS entered the cut and it gave her parkinsonism:
The bacteria which causes Lyme disease can imitate many disease including Parkinson's and there is a case of neuroborrelosis which depigmented the substantia nigra thus causing parkinsonism:
For the sake of brevity I kept this 'short' because there are lots of other indicators which I could list. During the course of my documentary I thoroughly investigated the relationship between pathogens and PD. Yes there are also indicators that viruses may be involved but there has not been a case of a viral infection leading to PD. They are thought to weaken the immune system making the person susceptible to PD.
Taken together, this body of information is the best hypothesis as to what may cause PD. Sure toxins like pesticides cause PD but not all cases of PD.
I went 'over the top' here because I know people on this site are interested in hypothesis's explaining the origin of PD.
I had TB age 12. Is it true as I recently read that TB lurks in the system and can come back in old age? I can trace PD associated symptoms right back to that age or earlier , e.g. stiff face which I thought was dry skin until the spots arrived!!, nightmares, "Eileen is slow to get going" PE teacher's report when 13, slow transit, slow handwriting etc.. etc. I always thought something was wrong and when I was diagnosed with under-active thyroid, aged about 40 I thought well that's it then. I am now 76 and my PD is slow in progressing which ties in with how long I suspect I have been affected by whatever it is. All highly theoretical of course but I'll keep taking the bio yoghurt.
b. Both my maternal grandfather and maternal uncle had Parkinsons. Two years before my PD diagnosis I contracted Lyme disease which was detected when symptoms had progressed to joint swelling with fluid (not red circle around bite)
I have always made the "connection" or maintained the belief that Lymes "pulled the trigger" on my getting Parkinsons. The abstract from your extensive research led to the link to abstract (below). (My internist - who specializes in infectious diseases and who worked in Kenya with AIDS for many years dismissed the connection with a wave of the hand.).
Perhaps a bit too hasty ! THANK YOU for your write up. Value of HealthUnlocked has increased two fold !
Parkinsonism caused by Lipopolysaccharides
of Salmonella Minnesota (a Case Report) endotoxin.gmxhome.de/
The bacteria which causes Lyme disease can imitate many disease including Parkinson's and there is a case of neuroborrelosis which depigmented the substantia nigra thus causing parkinsonism:
Lyme-associated parkinsonism: a neuropathologic case study and review of the literature. ncbi.nlm.nih.gov/pubmed/129...
Thank you silvestrov for these valuable infos. honestly i was a very healthy person until diagnosed with Crohn's disease in 1991 sense then my health started declining .
I think my husband's Listeria -generated bacterial meningitis in 2001, from which he nearly died - brought on his PD. which only got diagnosed last year.
That's really interesting, windhorsepixy (great name!). I really think you've hit on something very important.
Maybe we are made vulnerable, by earlier infection, to the 'wrong' bacteria colonising and inflaming our gut which then makes it easier for pathogens to penetrate. I had measles very badly as an 8 year old (sadly 51 years ago now!) and have always felt it had some sort of role to play in my getting PD. I'd assumed it damaged my brain -though I didn't get encephalitis from it as some do. But it was only after having measles that I began to have incredibly vivid,often terrifying, dreams during which I shouted, talked and screamed and which have gradually got more frequent so that now I talk scream etc non stop in my sleep! I started to get constipation a few months after having measles which again has got worse as I've got older.
I have a gut instinct (groan!) that I was right about measles playing a pivotal role in PD but I'd got the mechanism wrong.
It would be very interesting to hear if other people had severe infections at any time in their life before being diagnosed with PD, regardless of whether it appeared to have any role in the subsequent PD.
If people want to either post on here or PM me with details of any previous infections I would be happy to collate the data and pass it on to anyone interested. It would of course be massively skewed, unrepresentative and as such completely useless in itself but it might trigger an idea for further research.
(I'm very aware that my attribution of measles as the cause of my PD is as unscientific as its's possible to be! To get any sort of evidence would need the incidence of PD in a large group of people who had measles at the same degree of severity as me and at about the same age, compared with the incidence of PD in a group of matched individuals who hadn't had measles. Only if the incidence of PD in the measles groups could be shown to be significantly higher than in the other group could we begin to think there might be a relationship between the two- though not cause and effect. It could be done! But not by me! And there must be thousands of people who had measles and didn't go on to develop PD!
I had mumps, measles, and chicken pox as a child. None of these cases were severe, just run of the mill. I may have had West Nile Virus approximatey 12 years ago (the first summer the media made a big deal of it). I was diagnosed with PD about 4 years ago.
I would like to know if PWP had improved symptoms while taking meds or without taking meds. If not taking meds and had improvement it sounds promising. but if taking meds and they improved sounds like their gut just got better at absorbing the meds. Either way it would be a good thing.
What a very interesting question Bailey. It opens up a whole new way of thinking . That's what is so good about this site - lots of people with lived experience of PD and lively minds- we're a great untapped resource for researchers!
Wow Pen. I think it was me who mentioned it because I had been told of a fellow who cured himself of PD with taking a Probiotic for gut / brain connection. I am on my second bottle but no real difference yet.
I think it was Bridielena - coupled with something I heard on the radio about the gur-brain connection. I then read Follow your Gut by Rob Knight published by TED books which doesn't specifically mention PD but which presents very convincing evidence about the critical role gut bacteria play in health. I highly recommend it - very accessible but also thoroughly referenced with 'proper' peer reviewed academic research. I also have tried various pro-biotics to reducen bloating. The only thing that has had any effect is a particulalr brand of yoghurt but unfortunately it also has fruit and sugar in it -so what it gives on the one hand it takes aay with the other. I've tried the plain variety and capsules but I've not hit the right one . . . . . yet.
I have read and tried to absorb all that has been written above.
Hard.
You all seem to have some medical background and articulate beautifully. I can't and feel if I understood it more easily then I would try to follow.....but it just isn't comprehendable enough for me to want to try.
I wish to read the KISS method from somebody.
Sorry....kind of depressed at the moment. ( have other problems not related to PD)
I'm happy to post on here anything I come across about trials. I only know about the UK. I'm about to take part in The Institute of Neurology's research into the role of genetics in idiopathic Parkinsons. You can find more details here
I did have a look at this site - certainly shows a bit of initiative! I don't really think I could recommend a DIY approach; the donors used by the NHS are throroughly screened. There may be a few issues that haven't surfaced yet .... . . . .
Pen. Thanks for the above which I have read, although I must admit not understood all of it. When I was first diagnosed, dare I say, about 10 years ago I asked a lot of questions on this Site. One about h pylori, which I have had at least 3 times. I was surprised to see how common this was amongst people with Parkinsons. I also asked about a frozen shoulder, once again this had been experience by a number of people. At this time I was searching for a reason why I had been diagnosed with Parkinsons. As time went on Diabetes 2, Acid Reflux and Thyroid joined the list. However, I have always believed that my helibactor lapses were linked with Parkinsons. It now appears that I may have been right. Thank you for all the work you have done, and I am sure, will continue to do. Keep up the good work.
uBiome.com "uBiome is a microbiome sequencing service that provides information and tools for you to explore your microbiome. " wait for one of their 5 for 1 deals which tests all of you. awaiting my results...
What a goldmine of information on this thread! Thanks to all above to contributing to it. I suspect it will be someone on this site who will solve the PD mystery. After all, among the PWP community are some highly motivated folks who are quite brilliant PLUS now have time to research and post info, and BONUS - they know how to write well! I hope this thread doesn't vanish - it will take me a while to process it all. I too believe there is something to the gut-bacteria cause/theory . In my past (especially in my teens and twenties), I had a few incidences of ulcerative colitis flare-ups. From then until now, I often felt that I had a weak/nervous bowel. At night, when I am quiet, I can almost hear it making creaking sounds...hard to explain this sound to my doctor, but that's the best way I can describe it. Even though I had a colonoscopy that turned up nothing unusual in my 30s, I knew something wasn't feeling right. And like others on this site here here, have had bloating/cramping which comes and goes. So, my gut has always been a problem, and wondered if there was a connection with PD.
The other reason I think gut bacteria are involved is from stumbling upon some welcome relief, albeit short-lived, from something I ate. Living in Vancouver with the influence of Asian cuisine, I try different foods that one might not know about in Europe or other parts of North America. One day, a couple of years ago, I went to a Korean restaurant for lunch and tried some spicy Kimchi - a mix of fermented cabbage with garlic and a hot spicy sauce. I had an amazing feeling about an hour after eating it - I felt so much better! I googled "kimchi" to see what magic ingredient might be lurking inside it - the answer was "probiotic" qualities from the fermentation. Despite not being a fan of spicy food, I make an exception for kimchi because it seems to make me feel better. (I now keep some in my fridge). The other experience I had which makes me suspect a bacteria-causal theory, is an experience I had last winter. I had had a cold/bug that my doctor thought might be a bacterial infection, so she put me on a course of antibiotics that made not just my cold symptoms, but also all my PD symptoms disappear for a few days . I could walk without a limp, breathe freely, walk with a straight spine, and my mood was elevated too! Sadly, when my course of 10 days had finished, my PD symptoms returned. It did make me wonder if the antibiotics I took were starting to work, but not strong enough to get rid of whatever it was(is) responsible for my PD symptoms.
That's so interesting Oceanflower. I'm so pleased for you that you've found kimchee and it's having such a positive effect. And although science would say your experience with the course of anti-biotics was anecdotal and couldn't be generalised to others, it is so very striking and lends support to the 'bad gut bacteria' model of PD. But of course if we find something that works for us then we'd be nuts if we didn't use it just because it's not been tested empirically.
The more I read the more keen I am to try the anti-biotic route - just have to persuade my GP to do a heliobacter pylori test - but given that even a hint of spice in food has me writhing in agony I feel that if I ate kimchee I would probably explode. I've not seen it in the UK but if I do I will very cautiously nibble some and await events!
Kimchi frightened me too since I am a wimp with spicy food, so I was amazed that it only caused my eyes to water, and not a problem with my gut. But the smell of kimchi is off-putting, so you might find that probiotic relief easier in yogurt.
What antibiotic did your Dr prescribe? Also you made me hungry for kimchi. While living in Atlanta we (my roommate's & I) used to make kimchi plus there is a farmer's market that sold 16 different varieties. I miss those days.
Very impressive that you made your own kimchi! Sounds like a fun house of roommates!
To answer you question, the antibiotic was Clarithromycin (Generic Biaxin)
"Clarithromycin is a macrolide antibiotic that kills bacteria and prevents their growth by impeding with the formation on proteins in the bacteria. It is used to treat tonsillitis, bronchitis, pneumonia, sinuses and infections of the skin, respiratory tract, ear, skin and throat.It can also be used to prevent duodenal ulcers and Mycobacterium avium complex, which is a lung infection that impinges on people with HIV."
Our home made kimchi was goodand I now have the urge to go ahead and purchase some. One of my favorite versions of kimchi is daikon because it is hot and cool. Korean cuisine is one of the hottest in the world and kimchi is their national dish. I heard the kimchi museum in S. Korea has 300 different types to try. One day there and it would be a gastronomical nightmare - no matter how much you love kimchi.
I asked about the antibiotic because of the obvious relationship between bacteria and PD. I personally am in favor of a PD + antibiotic trial and the only question is which combination to use?
It is possible that clarithromycin improved your condition for reasons other than killing bacteria. It is a powerful anti inflammatory and immunomodulator:
I am familiar with clarithromycin because it is a component of RHB104 - a new antibiotic targeted for the treatment of Mycobacterium avium subspecies paratuberculosis (MAP) in the treatment of Crohn's disease. There is a lot of evidence that MAP causes CD (and I think it does):
Thanks for sharing your research findings. It is interesting. I had a colonoscopy in April due to some feeling of inflammation in my colon, and my gastroenterologist mentioned that my terminal ileum indicated "highly suggestive of Crohn's disease". He then told me not to worry unless I have more discomfort. Maybe the clarithromycin relieved my CD symptoms and also made my PD symptoms disappear for a few days.
It is very possible this is the case. As a final thought (a little paranoia-inducing thought) some people think PD is caused by MAP and his name is Dr. Dow:
M. paratuberculosis and Parkinson's disease--is this a trigger.
Thanks Rich! You're amazing. I am trying to avoid too many meds, so would rather try natural things (for fewer side effects, hopefully), but will do my reading on all your suggestions.
My pleasure to help out. I have more time this morning than I thought I would. I stated and finished a painting yesterday (late last night) so I can surf the web. I found a number of supplements which can help both inflammatory bowel disease (Crohn's) and PD. The best candidates are berberine and allicin;
Berberine & PD: Berberine prevents nigrostriatal dopaminergic neuronal loss and suppresses hippocampal apoptosis in mice with Parkinson's disease.
What makes allicin and berberine excellent choices for therapy is they both have antibiotic-like activity and are shown to be neuroprotective for PD. In my segment on Lyme disease I featured a company who was curing Lyme infection with allicin. I like both of these choices and think they would help anyone with PD (and CD).
Rich
PS. I am sure either allicin or berberine has an enteric coated form and if you want to try either of these supplements buy the enteric form. All this means is the pill is specially coated to withstand stomach acidity and then it will be delivered to the small intestine. At this time it will be dissolved and absorbed. Sending an antimicrobial to your small intestine sounds like a good idea to me.
Well, I am stunned by this string. I have read it all but some of it is a bit too 'high brow' and technical for me to understand. Having said that, I found it fascinating reading.
PD is as individual as we all are, how did we get it? Well that is the big question. I have read about Dr Janice Walton-Hadlock's theory of an untreated foot/ankle injury, and the unresolved emotional issues [which resonates with me]. I have also read about the frozen shoulder connection with PD, interestingly my mother had a frozen shoulder (but not PD) and on a visit to the physiotherapists, she told me that the FS was linked to some kind of emotional trauma, which we do read a lot about in connection with PD.
I would be the happiest person alive (well that might be a bit of an exaggeration) if I could pin down just exactly how I came to have this strange condition. As a girl I wore high heeled shoes [days long gone now - of course I did not listen to the teacher who told me that I would pay for wearing this kind of footwear in the future, why should I bother about what would be going on with my feet when aged 50?] and of course I fell off them more than once. The result being both ankles distorted out of shape from sprains... Today I cannot wear even the tiniest of kitten heels, but am doomed to wearing flat shoes for the rest of my natural.
So Dr Janice has me on that score. However, I cannot find anyone who does Tui Na, close to me and despite trying I cannot feel the energy flow myself.
I recall jumping on my bed aged around 11, and hurting my neck quite badly. My mum didn't take me to the doctors or get me x-rayed, she just made me a collar that kept my head still, which I wore till my neck didn't hurt any more. I cannot recall who came up with the trapped nerve in the neck/shoulder area (sorry), but that person has me, too.
Then what about the toxins? I worked for a chemical company in a laboratory for about a year... I have used talcum powder, hairspray, deodorant, face creams... etc. etc. until fairly recently. The reading I have done has encouraged me to buy an eco-friendly mattress, replace all personal care items for ones containing zero % nasties and clean my house only with chemical free products...
So what about the intestinal flora? Not too sure how I feel about the faecal transplant, sounds awful - but I'll check it out. I eat as healthily as I can, I know that grains and sugar are the enemy and avoid them whenever possible. I've cut right back on my alcohol consumption, sadly I've not managed to cut it out altogether, which is an aim of mine. I don't like the way I feel if I drink more than 1 glass of wine.
My morning routine starts with (coconut) oil pulling. I have a glass of hot water and after a bit I drink a glass of Aloe vera juice, followed by my breakfast of porridge with freshly milled Omega seed mix and fruit (sorry Gillian McKeith). Like the sound of kimchi, will definitely give it a go. Periodically I will have live bacteria (I take Bio-Kult) just to keep my friendly bacteria level up. I am quite perplexed by all the talk of taking anti-biotics for PD... I always avoided them like the plague simply for the fact that they kill ALL the bacteria - both good and bad. So reading that here has me confused?
I was diagnosed with PD 18 months ago, however, I suspect that it's been creeping up on me for some time... My first indication was when I noticed that my writing had gone all wierd. When I look back to when this change occurred it was around Christmas 2009. I know that when my Dad died in 2008, my writing had been fine. Which brings me to my emotional issues... both parents died in 2008, first my Dad and then 6 months later my Mum. I started the menopause. I left work. My lovely little grandson was born and my husband's estranged son returned from (a 20 year unplanned stay in) USA to live with us for a while. All of that happened at around the same time.
By 2011 I couldn't write even my name! So I just avoided writing. In 2013 my granddaughter arrived and it was whilst looking after her that my daughter asked me about my well-being. Why did I struggle so much to get down to the floor and back up again? Why was I so slow and clumsy, fumbling about with fiddly little fastenings on baby clothes? She asked my husband if he had noticed anything different about me, he said my shuffling walk and quiet speech. Anyway that started the ball rolling, I eventually had a DAT scan, which indicated that it was PD, but I didn't need any medication. Phew!
How did I feel about this news? Relieved. At last I had an answer for the way I felt in my head. I knew now the reason that I didn't feel like me any more. After a honeymoon period filled with self-pity, I picked myself up, joined loads of groups and started Voluntary work. I soon began to discover that the drugs given for PD have horrible side effects. The PD 'dance' is not due to the condition but is a side effect of taking drugs that are supposed to help the condition. I became afraid of these drugs and don't actually want to take any until I OBSOLUTELY have to. I hate the idea of starting to take drugs that you can never stop taking, so intend to stay off as long as possible - we'll see what the PN has to say on my next visit next month.
So to round off this very cathartic session, that is why I have read anything I find on what has worked for other people, like Howard Shifke and Dr Gary Sharpe, about how what you eat is significant (whether you have PD or not), importance of movement, whether that's Conductive Education, Boxing, dancing or yoga, the value of meditation and mindfulness.
Phew, I feel loads better now, if you've made it to the end, give yourself a pat on the back...
Thank you for sharing your story and your thoughts. It's so interesting to hear other people's experiences. I am having a rubbish morning but will respond more fully as soon as I can. We all have so much knowledge and experience - it's so beneficial to share it. Thanks again.
Hi Pen1.Sorry I have been off the air for such a long time but I'm back now.
I really like your post (I have just spent the last two hours reviewing the follow up Posts and am staggered by the quality) and I'm going to copy it for my meeting with my PDNS on 27 July. I only intend to raise the gut and it's place in the PD story
I had my H Pylori level checked by my GP some time ago and it came back negative. I did not really understand the response although they were looking at an infection Helio bacterial or something similar to that so I might be confusing things here LOL
Just saw this in Parkinson's news today from another study done on gut bacteria and PD (Dec 2 2016) Not a lot of detail, but the study should be found in the journal CELL.
For the first time, researchers have found a functional link between the bacteria in the gut and the onset of Parkinson's disease, one of the world's most common debilitating brain disorders.
A team of scientists from several institutions in the United States and Europe showed how changing the bacteria in the guts of mice affected the manifestation of Parkinson's symptoms — even including bacteria taken from the guts of humans with the disease.
The findings suggest a new way of treating the disease: The best target for treatment may be the gut, rather than the brain. The researchers hope the new information can be used to develop "next generation" probiotics, more sophisticated than the sort of probiotics found on the shelves of health food stores today.
"One can imagine one day, maybe in our lifetimes, patients will be prescribed drugs, and in the pills will be the bacteria that protect them from disease or even maybe treat their disease symptoms," said Sarkis Mazmanian, one of the researchers on the team and professor of microbiology at the California Institute of Technology.
The scientists published their findings Thursday in the journal Cell.
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