Author Topic: Alternative approach  (Read 9160 times)

Offline Helenbell

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Alternative approach
« on: Jun 11 2012, 11:03 AM »
Hi folks,

just found this recipe for addressing MD with supplements by another sufferer  http://www.menieresfoundation.org/johnsregimen.htm
I'm going to try it...just ordered the vits today.  As ever, you need to make own decisions about supplements and research them thoroughly. 

Will hoot very loudly if I get any results  :D

(not sure how to add live links...ah got it..highlighted below, after about 7 edits - good ol' fog)

Offline Helenbell

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Re: Alternative approach
« Reply #1 on: Jun 11 2012, 11:07 AM »
Hi folks,

just found this recipe for addressing MD with supplements by another sufferer

http://www.menieresfoundation.org/johnsregimen.htm


I'm going to try it...just ordered the vits today.  As ever, you need to make own decisions about supplements and research them thoroughly. 

Will hoot very loudly if I get any results 

Offline The Wobbler

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Re: Alternative approach
« Reply #2 on: Jun 11 2012, 08:26 PM »
That link is a bit out of date.  Try this one for a later version of JOH.  You will see that it has changed somewhat.

http://www.zoominternet.net/~kcshop/JOH.pdf

It seems to work for many but not for all but in looking up the above link I stumbled across the following links on alternative treatments and placebos:

http://www.dizziness-and-balance.com/disorders/menieres/men_alt.html


http://www.dizziness-and-balance.com/disorders/menieres/menieres_placebo.htm

Interesting reading.

Give me a placebo that works?!  ???

Offline Helenbell

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Re: Alternative approach
« Reply #3 on: Jun 12 2012, 02:14 PM »
Thanks for that.  And yes, always good to keep an open eye to both sides.  My reckoning is trying something that won't harm or cost a fortune...kind of makes me feel I'm back in the driving seat a little.  :)

Offline angdunc

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Re: Alternative approach
« Reply #4 on: Jun 25 2012, 05:04 PM »
Hi Helen

I too read with interest John from Ohio's regime and thinking of trying it. Trouble is every vitamin site on line doesn't stock any of the compounds. If you find them could you post a link to the site where we can purchase them.

Thanks
Angela

Offline Emma

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Re: Alternative approach
« Reply #5 on: Jun 25 2012, 05:23 PM »
I really wanted to try this when things got bad but like Angela I couldn't find any of the vitamins available - it is an american approach - good luck finding them though xx
Be happy - Keep smiling :-D

Offline Helenbell

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Re: Alternative approach
« Reply #6 on: Jun 27 2012, 10:14 AM »
Hi Emma and Angela, I will post links to where I purchased. I'm pretty sure I got all but the Lemon bioflavonoids form Amazon uk.  Will go back through invoices. I'm also looking at natural immune response suppressants just in case that is the cause for me...I still don't know whether I have vestigial disorder from virus or MD....nor does my gp.  Will be just as well to look at immune response naturally as it involves a good diet etc.

Anything I find I'll just keep plugging on this thread  :)
P.S some more info on auto immune MD
http://www.hearinglosshelp.com/articles/aied.htm

Offline Helenbell

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Re: Alternative approach
« Reply #7 on: Jun 27 2012, 10:17 AM »
http://www.slideshare.net/cesposito/tinnitus-menieres-syndrome-a-natural-approach

Offline Helenbell

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Re: Alternative approach
« Reply #8 on: Jun 27 2012, 10:23 AM »
VHT exercises pdf download
I'm going to try these as I know it will probably winter or next year before I get a referral through for this....
http://www.brainandspine.org.uk/information/publications/brain_and_spine_booklets/vestibular_rehabilitation_exercises/index.html

I also have upper spine problems and looking into cervical connection - working on pc sticking my neck out just being one of the worst....thought this was very useful and promising

http://www.ncbi.nlm.nih.gov/pubmed/12555932

Another addition on natural approach auto immune diseases.  Interesting info and seems like a good springboard for further research. I have worked with toxic materials for several years......that sails, general lifestyles are toxic now re stress and diet etc.
http://drhyman.com/blog/conditions/how-to-stop-attacking-yourself-9-steps-to-heal-autoimmune-disease/




Offline Helenbell

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Re: Alternative approach
« Reply #9 on: Jun 27 2012, 09:39 PM »
[/size][/size][/size]
Lemon bioflavonoids
http://www.luxebc.com/health-supplements-c7/vitamins-c8/bioflavonoids-c181/bioflavonoids-500-mg-100-tablets-p14108?utm_source=froogle&utm_medium=ppc&utm_term=nature-039-s-life-bioflavonoids-500-mg-100-tablets-size-2-x-2-x-3-7-inc-size-2-x-2-x-3-7-inches-nli-00151&utm_campaign=froogle#141

L LYSINE
 http://www.amazon.co.uk/s/?ie=UTF8&keywords=l+lysine&tag=googhydr-21&index=aps&hvadid=9533812040&hvpos=1t2&hvexid=&hvnetw=g&hvrand=14603144682099655596&hvpone=&hvptwo=&hvqmt=e&ref=pd_sl_6mt7cavaa4_e

BETA GLUCANS
http://www.amazon.co.uk/s/?ie=UTF8&keywords=l+lysine&tag=googhydr-21&index=aps&hvadid=9533812040&hvpos=1t2&hvexid=&hvnetw=g&hvrand=14603144682099655596&hvpone=&hvptwo=&hvqmt=e&ref=pd_sl_6mt7cavaa4_e#/ref=nb_sb_noss_1?url=search-alias%3Daps&field-keywords=Beta+glucans&rh=i%3Aaps%2Ck%3ABeta+glucans

Vinpocetine
http://www.amazon.co.uk/s/?ie=UTF8&keywords=l+lysine&tag=googhydr-21&index=aps&hvadid=9533812040&hvpos=1t2&hvexid=&hvnetw=g&hvrand=14603144682099655596&hvpone=&hvptwo=&hvqmt=e&ref=pd_sl_6mt7cavaa4_e#/ref=nb_sb_noss_2?url=search-alias%3Daps&field-keywords=vinpocetine&rh=i%3Aaps%2Ck%3Avinpocetine


All others can be sourced Amazon, Ebay, Holland and Barret etc etc

Offline Andrew H

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Re: Alternative approach
« Reply #10 on: Jun 28 2012, 02:07 AM »
I tried this regimen and sourced the lemon bioflavonoids from the USA, so it was quite expensive in terms of shipping costs. After a month or so it actually made my symptoms worse. I had 'thicker' general unsteadiness (if that makes sense), a kind of continuous fuzziness which ceased immediately once I stopped taking the pills. So, they obviously do have an effect, but in my case not the one I was hoping for. Other people's experiences may vary of course, but I was not convinced by the central argument that MD is viral.

Offline The Wobbler

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Re: Alternative approach
« Reply #11 on: Jun 28 2012, 07:01 PM »
Bear in mind that the latest version of JOH has no Beta Glucans in it and the dosages of other components have changed.

I provided a link to his May 2011 update in an earlier post.  Make sure that you are not following out of date advice!

He claims an 80% success rate.  I think I am one of the 20%.

Offline angdunc

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Re: Alternative approach
« Reply #12 on: Jun 30 2012, 05:34 PM »
Hi Helen

Thanks for the links, I managed to get them all! (Phew, exhausting it was) Going to try with the lemon bioflavonoids tomorrow for a week, then keep adding them on like John says. We can but hope that they make some difference. As for Andrew saying he feels worse, I think John did mention that they did make some people worse initially but to be persistent and keep at them. Must admit if something doesn't work overnight for me I tend to give up :) but I promise I will keep on taking the tablets which I must say are pretty large :)

Lots of luck Helen
Angela

Offline Summer

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Re: Alternative approach
« Reply #13 on: Jul 01 2012, 10:06 AM »
My husband was diagnosed with MD in November last year.  He had a terrible time for several months, drop attacks lasting 7 hours, vertigo and nausea.  He started on JOH regime just over two months ago, together with a "hunter gatherer's diet or cave man dient".  Eating no processed foods, only what a cave man would eat.  I think the supplements and the regime go hand in hand, no dizzy or drop attacks, fingers crossed, but I am so sure it is due to the diet and supplements.

Offline chrissieg

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Re: Alternative approach
« Reply #14 on: Jul 01 2012, 10:35 AM »
My son did a school project on the safety controversy of aspartame as a sweetener in food . Although there were no firm conclusions, clearly many people are worried about its impact on health. It made me think that I was actually eating loads of the stuff for years in diet products such as yoghurts. Then when I started reading labels for salt content, i realised that it is in masses of "ordinary" products instead of sugar.

I have made a conscious effort to cut it out of my diet and this coincided with my current period- 20 months of remission from attacks. I have no idea whether this contributed or is just coincidence, like everything else with MD but figure it cant hurt to cut out a chemical additive from your diet.

Just thought I would add this as people are considering diet alternatives.
Chrissie
Chrissieg

Offline The Wobbler

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Re: Alternative approach
« Reply #15 on: Jul 01 2012, 03:54 PM »
I have been watching ‘The men who made us fat’ on TV.  Fascinating viewing.  I think somewhere in there was the advice that the best foods have one ingredient only.

Like Chrissie I have found that in avoiding salt you avoid processed food.  The spin off is that my diet now has a lot less stabilisers, colourants, preservatives etc.  I can’t be sure that it is helping MD directly but I am convinced that it helps general wellbeing, which in turn helps MD somewhere in the background.

Offline jacky112

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Re: Alternative approach
« Reply #16 on: Jul 01 2012, 09:31 PM »
Hi I watched that program, I have cut salt to a minimum, and also been on a wheat free diet for 6 months, I have had less migraines, "which used to make me more dizzy" I didn't know about cutting back on tea and coffee, I am useing  a cup instead of a mug now. p s lost 1/2 a stone not eating wheat,  ;)

Offline Helenbell

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Re: Alternative approach
« Reply #17 on: Jul 02 2012, 09:56 AM »
I think this this the updated link you gave...thanks.  I notice it's minus the Beta Glucans but need to scan it more closely: http://www.zoominternet.net/~kcshop/JOH.pdf
Bear in mind that the latest version of JOH has no Beta Glucans in it and the dosages of other components have changed.

I provided a link to his May 2011 update in an earlier post.  Make sure that you are not following out of date advice!

He claims an 80% success rate.  I think I am one of the 20%.


Offline Helenbell

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Re: Alternative approach
« Reply #18 on: Jul 02 2012, 09:57 AM »
I haven't been on it long enough to say Andrew, but I'll keep plodding on for a while.
I tried this regimen and sourced the lemon bioflavonoids from the USA, so it was quite expensive in terms of shipping costs. After a month or so it actually made my symptoms worse. I had 'thicker' general unsteadiness (if that makes sense), a kind of continuous fuzziness which ceased immediately once I stopped taking the pills. So, they obviously do have an effect, but in my case not the one I was hoping for. Other people's experiences may vary of course, but I was not convinced by the central argument that MD is viral.

Offline Helenbell

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Re: Alternative approach
« Reply #19 on: Jul 02 2012, 10:15 AM »
Has anyone tried Vitamin D therapy.  A lot of talk out there re the benefits,  and for auto immune originated disorders. 

Found this site with a general mention about supplements at end of page.  https://sites.google.com/site/drgeraldlewis/meniere-s-disease
He notes that some of the anti inflammatory circulation boosting supplements may help or hinder.  Worth a further look into why.

I've packed in coffee and nicotine as both can significantly constrict and, or block blood vessels. Can't cope with caffeine any more because I'm already getting adrenaline rushes with this ...peaking to panic level.  Sugar is off the chart too, plus all processed food.   i could kill a fag and a strong coffee often times when this drives me over the edge  :)



Offline angdunc

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Re: Alternative approach
« Reply #20 on: Jul 02 2012, 12:11 PM »
Oooh Helen I feel for you!  No cigarettes, coffee or sweet stuff all at once. Good on you, not sure I could do all three at once!!.

I started the John from Ohoio regime although had to crush up the lemon flavonoids and put in my tuna mayo sandwich, just too big to swallow :!

Offline The Wobbler

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Re: Alternative approach
« Reply #21 on: Jul 02 2012, 07:00 PM »
Has anyone tried Vitamin D therapy.  A lot of talk out there re the benefits,  and for auto immune originated disorders.  

Found this site with a general mention about supplements at end of page.  https://sites.google.com/site/drgeraldlewis/meniere-s-disease
He notes that some of the anti inflammatory circulation boosting supplements may help or hinder.  Worth a further look into why.

I've packed in coffee and nicotine as both can significantly constrict and, or block blood vessels. Can't cope with caffeine any more because I'm already getting adrenaline rushes with this ...peaking to panic level.  Sugar is off the chart too, plus all processed food.   i could kill a fag and a strong coffee often times when this drives me over the edge  :)





That is an interesting link Helen.  I like the way that Doctor Gerald says of some things that might make your MD better that they might equally also make it worse like caffeine avoidance.

I have to say though that advice like ‘worth a try’ and ‘it may help’ are starting to sound less than impressive endorsements.  You could say the same thing about bathing in lukewarm custard!

In saying that I do quite fancy a double espresso.  Absence truly does make the heart grow fonder.... :P

On a more serious note I took vitamin D3 alongside the JOH regimen.  I can’t report anything conclusive I am afraid.  MD just seemed to carry on doing what it does – random, episodic, frustrating!

That being said ‘it might help’ someone else.  Who knows?

Offline Penny1871

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Re: Alternative approach
« Reply #22 on: Jul 02 2012, 09:20 PM »
The vitamin D link is very interesting and one that I discussed last week with the reflexologist that I've been seeing.

She gave me a leaflet "Are you getting enough Vitamin D?  For at least 50% of you, the answer is probably not....". 

I've found the leaflet on line should anyone be interested in reading it:

 http://www.nutri-online1.co.uk/Portals/1/Patient%20Guides/PIG%2013.Vitamin%20D.pdf



Offline Lindsey

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Re: Alternative approach
« Reply #23 on: Jul 03 2012, 08:18 AM »
Interestingly, I have been in contact with Dr. Gerry Lewis and his wife, Dr Monica Lewis, by e-mail a couple of months ago and have ordered some supplements through Dr. Monica Lewis.  (I live in Auckland as they do).  Dr. Gerry Lewis recommended that I continue with Bendrofluazide (diuretic) which he says excretes sodium and not just water, along with Betahistine (I take 144mg/day) and he recommended that I take magesium and calcium, ginkgo, a multi, CoQ10, bioflavnoids and plenty of Vitamin C and D.
Dr. Lewis and his wife recommend and use USANA supplements, as they believe them to be of high quality.  They did appear to be a very genuinely helpful couple.

Offline Helenbell

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Re: Alternative approach
« Reply #24 on: Jul 03 2012, 12:00 PM »
Lots of great answers - couldn't agree more with change of diet for the good anyway.  I do find I have much more energy behind the symptoms:)
Angduc:  my mother can swallow about 20 tablets in one now!!  I'm getting better and braving 2 or 3.  I am quite an addictive random person but I had such a fright when my last gp went down the stroke route (cleared of that now) I hit instant quit!! I don't think ever would have otherwise. So a misdiagnoses for two months...even though it knocked ten bells out of me did me great favour.  Caffeine and sugar definitely exasperate my symptoms, especially those nasty little adrenalin rushes.  I think Cercs having an impact on that too ...including gastric upsets :o

Wobbler...Lol...lukewarm custard....eloquent description of how effective I feel nowadays too  :D  Yes, each to their own, and it seems this whole inner ear disorder spectrum has all sorts of tricks and surprises ...a bespoke minefield!!

Lindsey - that's useful to know, I'm jotting down.  My supps include Q10, Ginkgo, mag, calc, Vit C, Butcher's Broom and Hawthorn tea, thick Chamomile tea when going gets tough, fresh ginger tea - lots of, Jon of O's first regimen...need to cross ref and revise - just printed off updated version today. Wasn't too worried about original listed as had a bit of prior knowledge about most. Meds: betahistine only 8mg x3 daily.  Was on Stemetil but my stomache hated it.  I'm also thinking about natural diuretics.  Never short of Dandelions. 

Penny I had no idea about Vit D till I my gp started to look at MS origin a couple of weeks ago and I discovered so much info about it in relation to auto immune.  Internet is a curse and a blessing. I know we have to be cautious about the latest fads pushed by the market, but even my 78 yr old mother in law, who is/was an orthodox nursing sister new we were notoriously short in the UK
Another link for natural diuretics http://www.your-healing.com/naturaldiuretics.html but there is LOADS of stuff out there as y'all know.

NEWOSA65

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Re: Alternative approach
« Reply #25 on: Jul 14 2012, 09:19 AM »
Interesting reading... it pays to take a powerful multi vit/mineral tablet such as Quest one-a-day?!  Cheaper alternatives are a waste of time.  Thx for adding this... Simon :) ps., as i recall like VitA , VitD has to be taken in moderation though?

Offline Helenbell

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Re: Alternative approach
« Reply #26 on: Jul 16 2012, 08:19 PM »
I always understood od'ing D was dangerous because body stores it however seems there is a lot of interest in the benefits of higher therapeutic levels.  This is some info I received from a Labs sufferer :


Table 1: Serum 25-Hydroxyvitamin D [25(OH)D] Concentrations and Health* [1]
nmol/L**   ng/mL*   Health status
<30   <12   Associated with vitamin D deficiency, leading to rickets in infants and children and osteomalacia in adults
30–50   12–20   Generally considered inadequate for bone and overall health in healthy individuals
≥50   ≥20   Generally considered adequate for bone and overall health in healthy individuals
>125   >50   Emerging evidence links potential adverse effects to such high levels, particularly >150 nmol/L (>60 ng/mL)

Watch this most excellent video
http://www.youtube.com/watch?v=yhUuf2QZd_E&feature=related 


And apparently toxicity from D is rare...anyway ...Like most of these things, I'm guessing this new high dose interest isnt backed by clinical trials ?

Offline Spunkmeyer43

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Re: Alternative approach
« Reply #27 on: Feb 21 2013, 10:44 PM »
I know it's been a while since anyone has posted but if your thinking of trying john of ohio's regimen, please email him... He's a really pleasant chap and got back to me immediately... I find one of the upsides to this disease is people suffering to what ever degree are so willing to help...

Offline bluespurs

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Re: Alternative approach
« Reply #28 on: Mar 11 2013, 08:36 PM »
Tried out this regimin last year, bit of a mission to get hold of all pills,,,, had to get the lemon bioflavanoids from the vitaminshoppe in america and a couple of other things as I recall.
Best of luck to all those who try it.
No matter how hard we try
the man can never hear us cry
we could scream and yell
but he is in his heaven while we're in our hell!!!