[leonore]

well, I just got my biopsy results back from endoscopy, and quick research shows this h-pylori bacteria, when treated, helps reabsoption of levadopa, and returns one to longer "on" periods. Anyone care to share what they know?? Leonore (on vacation in Cape Cod at cell at 347 489 9123)

[reverett123]

leonore, there is some serious danger here so be careful. Do a forum search and you will find the full story, but the condensed version is that the standard way of doing things is to hit the HP with a mix of antibiotics and wipe it out.

A healthy person can do that but for a PWP it can be the end and I'm not kidding. The problem is that all those dead bacteria flood the system with toxins. Our slow GI tract, leaky gut wall, and leaky BBB combine to spread the toxin to places that we definitely don't want it. It can do serious nerve damage and even put you into a wheelchair.

You may remember Ron's experience with his infected tooth recently. Same toxin but in the case of HP eradication there is a lot more of it, it hits all at once, and it is in areas beyond your defenses.

So, what to do? Good question. My own answers are tentative so don't put too much faith into them, but....

First, consider the possibility that HP is not the problem but that its overgrowth is. There is reason to suspect that it may be beneficial in lower numbers. It lives nowhere but the human stomach. Killing one's host is bad design.

Second, get the GI tract working before doing anything. Whatever it takes.

Third, one thing that both stimulates the GI tract and kills HP is rhubarb root. I try to take it a few days evey now and then and it seems to have it under control. But remember hat the idea is reduction of numbers, not eradication.

Fourth, follow up with probiotics. I know that HP is in the stomach and everyone else is downstream, but I do it anyway.

Finally, and I haven't tried this yet, there is an intriguing treatment using healing clays to absorb toxins from the GI tract. Seems like it would fit right in.

Anyway, be careful.

Originally Posted by leonore

well, I just got my biopsy results back from endoscopy, and quick research shows this h-pylori bacteria, when treated, helps reabsoption of levadopa, and returns one to longer "on" periods. Anyone care to share what they know?? Leonore (on vacation in Cape Cod at cell at 347 489 9123)

[lou_lou]

this is for Leonore She wants more info please - Ron Hutton? was it you? looking for your thread...
...

[annefrobert]

Eleonore,

Indeed, your question is a hard one, nobody having really much experience.


From a neurologic point of view

1. May Helicobacter Pylori be the main cause of your IPD?

On its own, no, PD is for sure a multiple hits on-going process.

As a co-factor, yes most probably, in a certain amount of cases, but the big problem is to know by who and to which extent?

(see the case I report, #1 in pdf file).

2. Is it important to eradicate your Helicobacter Pylori

Classically, there is no consensual protocol defined about this problem, very few searchers and MD are aware of the different problems involved.

Theorically, yes, it could be an interesting improvement to get rid of a cause of chronic inflammation

(see #2 in pdf file).

3. Is it dangerous to try?

The problem is not the eradication itself but the way to do it

(see the studies of SM Dobbs, #3 in pdf file)

4. Who could help?

I would suggest you or your doctor or neurologist to search Marshall protocol on Google and then, if convinced, to contact Trevor Marshall

(see # 4)

I hope all these data will help you.
If you don't want to go that far, I would suggest you to follow Rick's expert advices as they result from his own experience (the rhubarb trial) and from our collaborative works upon the question.
Please give us news about your choices.

Anne

[annefrobert]

Still, the fact that my stalevo has been so irrregularly working, means that there's a good chance that this is the rest of the explanation why I'm off so ridiculously often lately. Leonore

I would not bet for this, Eleonore,
could you please give the exact treatment -doses and schedule- that has been prescribed to you and approximative schedule of your off sessions please

Anne

[Chemar]

just wanted to share our success eradicating h.pylori with Mastic Gum (aka Gum Mastica from Greece) which kills the bug (we got ours in capsule form at our local Vitamin Shoppe branch (www.vitaminshoppe.com) and also DGL- licuorice root, which heals the ulcerated areas.

It *must* be DGL-liquorice (usually comes in cheawable wafers- we like the one by NOW Foods which i get at www.iherb.com ) Other forms of liquorice root are not the same in GIT mucosal healing properties, and regular liquorice root can elevate blood pressure, so do be sure to only use DGL-liquorice root for this (DGL = Deglycyrrhizinised liquorice )

hope that can maybe help if you need to try to avoid the chemical rx drug route.

[leonore]

thanks so much for your heads-up. My neurologist is going to thoroughly research this, and get back to me. I appreciate the time you took to warn me of treatement risks. Luckily, colonoscopy done at the same time as endoscopy showed GI was ok, otherwise. But the HP was found in a biopsy done on a node, so there's more to the story. Still, the fact that my stalevo has been so irrregularly working, means that there's a good chance that this is the rest of the explanation why I'm off so ridiculously often lately. Leonore

[leonore]

Thank you for all of the information, again. What is the doseage of rhubarb root that you recommend? I ordered and just received it, one with alcohol, one without, from Herb Pharm and Nature's Answer.

It's been quite an experience trying to coordinate my h-pylori treatment from Cape Cod, given my pencicillin/sulfa allergies, and my conscientious but over-extended neurologist headed to Italy tonight for 2 weeks, trying to be sure my internist is overseeing all of this from Brooklyn. I'm only rushing this because I've spent too long (several months) becoming increasingly dependent as my "off" periods have inexplicably increased, causing me to close my private family therapy practice., and on my last week of 2-week vacation, I want to give my family members a break and return to my old exceedingly independent self where I can go places alone without fear of "freezing" and thus needing chaperones, or people to check on me all the time.
Mucuna has been my saving grace, but is inconsistent.
So my regimen just arrived of Biaxin, Flagyl and something for my stomach.
Wish me good luck. I've started the licorice root wafers, already.
best, Leonore

Originally Posted by reverett123

leonore, there is some serious danger here so be careful. Do a forum search and you will find the full story, but the condensed version is that the standard way of doing things is to hit the HP with a mix of antibiotics and wipe it out.

A healthy person can do that but for a PWP it can be the end and I'm not kidding. The problem is that all those dead bacteria flood the system with toxins. Our slow GI tract, leaky gut wall, and leaky BBB combine to spread the toxin to places that we definitely don't want it. It can do serious nerve damage and even put you into a wheelchair.

You may remember Ron's experience with his infected tooth recently. Same toxin but in the case of HP eradication there is a lot more of it, it hits all at once, and it is in areas beyond your defenses.

So, what to do? Good question. My own answers are tentative so don't put too much faith into them, but....

First, consider the possibility that HP is not the problem but that its overgrowth is. There is reason to suspect that it may be beneficial in lower numbers. It lives nowhere but the human stomach. Killing one's host is bad design.

Second, get the GI tract working before doing anything. Whatever it takes.

Third, one thing that both stimulates the GI tract and kills HP is rhubarb root. I try to take it a few days evey now and then and it seems to have it under control. But remember hat the idea is reduction of numbers, not eradication.

Fourth, follow up with probiotics. I know that HP is in the stomach and everyone else is downstream, but I do it anyway.

Finally, and I haven't tried this yet, there is an intriguing treatment using healing clays to absorb toxins from the GI tract. Seems like it would fit right in.

Anyway, be careful.

[leonore]

thanks, all of you, for your attention. Ordering products you suggested, NOW DGL licorice root chewables, and looking into rhubarb root.. Still developing a western med. plan, too
My neurologist leaves for 2 weeks in Italy tomorrow and is doing alot of research on this. We've been back and forth by phone, and he wants a covering competent doc while he's away. Awaiting call.
Meanwhile, I switched to a superb GI doc at NYU where my neurologist is, who my friend with colon cancer likes alot(she's ok). This doc is away, but I'll see him in 2 weeks.
Got my biopsy report by fax, which is a bit more troublesome: duodenitis; antral nodule; gastritis.
Antral nodule shows showing "gastric mucosa" on an "antral lode with focal reactive atypia," with h-pylori on Giemsa stain.
AND!!! biopsy in body of stomach, more gastric mucosa, marked chronic and mild acute inflammation" with "focal mild intramucosal hemmorrhage."
And, just to complicate things, I'm allergic to penicillin and sulfa, primary components of western med h-pylori eradication.
This is all quite scary.
Have been googling all of this, naturally...need to keep a step ahead of doctors...

[leonore]

Just a quick word to say that after five days of Biaxin, Flagyl and licorice root lozenges, I jumped out of bed and made everyone breakfast today. Last few days were a roller coaster of infinitely long frozen hours and feeling better than in a long time. I took a break from rhubarb root, as it seemed to make me feel weaker. Thought you all would be intrigued by the proof of connection between helicobactero-pylori demin and PD "off" periods. It obviously has been messing with levadopa absorption, big-time, to the point where I haven't even had dyskinesias when I dose up on Stalevo and Parcopa to get myself moving,and still have had no response to med's for up to five hours!

Each day has had longer "on" stretches, with an ability to move around and bicyvcle rapidly underwater with my noodle like I haven't done since last summer. The numerous daily "off" periods, however, have been also worse than ever, but seem to be shortening. Wish me luck. Leonore