The Orthostatic Tremor Forum (archive)

My daughter sent me this article. Has anyone ever heard about this? It sounds too good to be true.

Dear Joan,
Personally I know that my body reacts quite strongly on my intake of various things. I do believe that we can get better, or even cured, from various bodily problems by changing what we eat.
But I also very strongly believe that we are all different!
Someone might get very good results from one diet, others none at all. Some are allergic, others have various deficiencies... There is, I think, not one remedy that works for all - but if the remedy is not dangerous; why not give it a try?

I have been considering changing my diet a bit more and see what this brings. And reducing or removing some things for a while seems to be something I can manage. I will probably write about this in my thread.

So thank you for adding another interesting item to consider, Joan. And if you go the paleo-way, please write more here and let us know how it goes..

Take care!

Comments removed.

Hi Dave,

The article doesn't say that OT is an autoimmune disorder, it said that the lady had a number of health issues including one that was an autoimmune disorder. Below is a snippet I cut from it where I've pointed out wherever it has mentioned the word "autoimmune". In the first paragraph of the snippet it states that it is not an autoimmune condition.

I don't really want to mince words I just thought that this might be something that the OT community would be interested in. I was a bit skeptical too, since after extensive searching I couldn't find anything else on the net about the Paleo diet and OT tremors except for this particular article.

-link/reference removed by request

But if you reread the article you will see that the primary doctor decided to run a FANA test to check for other things than OT because this woman had a number of problems. And it doesn't say that they used the FANA test to tell if there was an improvement in OT. (In the article below I marked the paragraph that mentions the FANA test with a

Anyways, I don't think it would hurt anyone to try and change their diet for a month or 2 and see if they experience any positive results (and if so, why not keep on going?). Sure the guy is trying to sell a book, but he is not the inventor of the Paleo diet and there are plenty (and I mean tons) of free resources, information, recipes, etc on the internet for anyone who wants to give it a shot.

Here's the snip:
________
In our first conversation, I enthusiastically hoped OT was autoimmune. In typical Mat Lalonde fashion, he plainly and succinctly replied, “No.” My heart sank. From reading about Robb and Paleo’s success in the autoimmune community, I was hoping OT would neatly fit into this box. I think Mat sensed my disappointment because after a bit, he added, “don’t worry, we’ll resolve your Mom’s tremor issue.” Knowing the deep trenches my Mom was in with OT, I felt that’d be shocking. My Mom was completely skeptical. Mat was resolute.

Mat asked for a series of blood tests to validate various conditions. My Mom returned from her next doc appointment only to report the family care physician didn’t recognize some of the lab tests. My wife and I had a good laugh when the primary care doc was stumped. You did go to medical school, right? You have access to, The Google, No? Seriously. Take a second and look them up – Hippocratic Oath’er.

Because some of the specific labs were unfamiliar to primary care doc, she ran a catchall test called a “Fluorescent Antinuclear Antibody” (FANA) staining pattern. My Mom lit it up like a Christmas tree. Concerns then sounded from primary care doc – Eija may have Rheumatoid Arthritis (RA), or worse, Lupus – because the FANA lab just about had fireworks popping off the results. Based on the information I provided, Mat didn’t think Lupus was a player but he cautioned we should rely on test results.

Roundabout labs didn’t zero in on what we needed – testing for specific antibodies. Bottom line: it took tracking down a specialist to unearth specifics. Interesting, Mat – not one of her previous docs, who had been treating her for years – showed my Mom’s thyroid condition was in fact, autoimmune, Hashimoto’s Thyroiditis. Once at a specialist, we finally ran a number of labs, including the ones Mat recommended. One of the “unfamiliar” labs was Antithyroglobulin Ab. Normal range for antithyroglobulin is 0-40 IU/mL, my Mom’s result: 928 IU/mL. Screens for RA, Lupus, and other conditions were negative. The thyroid antibodies were so pronounced they impacted the FANA stain panel which sparked initial concerns about Lupus. Once again, Mat was spot on. Well… he is the Kraken.

Mat suggested the standard dietary intervention: grain (wheat), legume, and dairy free. Plus, because of the thyroid results, he added the additional caveat of the autoimmune protocol. I spelled out the protocol for my Mom… she was not amused. Nonetheless, my Mom labored through the autoimmune protocol, calling me at times to ask if she really needed to be this strict. She had brief excursions in those first weeks where she dove back into a sandwich or some other vice. Mat simply commented we really need compliance. I reined her in. I showed her results of other folks embarked on Paleo and their subsequent disease remission (this is the advantage of anecdotal testimonials, they provide grit for sticking with a program that shows promise). One person stuck in my Mom’s mind. It was the MS reversal and blog comments that somehow connected with my Mom. Maybe it was the disease & CNS relationship, but Whitney certainly played a role in convincing my very much doubting Mom. Despite a handful of digressions, my Mom became fully committed. With Mat’s input and autoimmune considerations, we later successfully reintroduced eggs, cooked tomato, and some fermented diary.
_________
Below the article there are some comments and someone said they had OT and wanted to know what to eat for the autoimmune protocol. The response to the question was this:
________
Thanks Amy, very good info. Robert, let me first say I understand how frustrating navigating any tremor condition can be – I applaud your research efforts. For a quick and dirty review of the sheer number of autoimmune diseases: http://en.wikipedia.org/wiki/Autoimmune_disease

Because OT is not autoimmune, we didn’t run labs to focus on the tremor condition. As you’ve read, my Mom had a number of health issues running concurrently – working in conjunction with the medical specialist, we used antibody tests to identify (or rule out) various autoimmune conditions. The Hashimoto’s Thyroid (not OT) required implementation of the autoimmune protocol. There are many good MD’s – our experience showed we needed to use an Endocrinologist (beyond the GP). A Functional Medicine Doctor maybe helpful – also consider the Paleo Physicians Network in your health-hunt.

There are some interesting connections with brain health, the CNS, and cholesterol. If I may suggest, do some reading on Dr. Campbell-McBride. Basic LDL numbers are only part of the story. Far more important, LDL particle size. If you’re taking statins, the great news is Paleo (like my Mom) can shed you of this drug type. Here’s a blood-test everyone can run: check your LDL size, pattern A or B (sometimes referred to as a VAP test).

I cannot emphasize enough, Robb’s book is an important read. Mat Lalonde has an eye-opening cholesterol discussion occurring roughly at 3:00,

Many regards – thank you to all the best wishes for our family.

______

Karin

If interested, the latest information on movement and other neurological disorders can be found by researching Neurologist David Perlmutter, MD

I do not frequent forums, if interested in direct inquiry, you can email me: sean//dot//korhonen/at/gmail//dot//com

Sean

Comments removed.

We received a request to remove this discussion on the Paleo diet. The request is based upon 2 very reasonable thoughts. One, that it ultimately involves some advertising of products and services, and second, it involves claims of reversing OT without any medical or clinical trials as proof.

There's plenty of information available on the internet that discusses this controversial diet, although most of the information is from the providers, and publishers of product or services. Anyone searching the web will find those links, so you should always consider the source of the information. This is true of any information that you find on the web. But the question that we have is how to deal with this issue on the forum.

Nothing posted on the forum can or should ever be considered as being condoned or supported. This is an open forum and the forum members provide the content and discussion.

In the past there have been discussions about acupuncture, shoes, blueberries, travel chairs, etc. and it appears that it has been beneficial to entertain these conversations. If we can't have these discussions here, then where? Even if the conversation concludes as the original post says "It sounds too good to be true".

The original question from Joan is an honest one, so it would not seem correct to remove the topic at this point. But, I have removed the links within the discussion as they may point towards advertisements.

I hope this satisfies everyone and is an OK compromise.

regards,


admin

I think if anyone finds something on the Internet and it is not harmful why not discuss it, even if it is some advertising and it worked for some , that would be great , we all are looking for help, like acupuncture worked for some and I know it did not work for me, but why not give it a try, I am all for trying harmless things.

Above

Hi Sean, and all of the members,

Lot's of things to discuss : )

As you can imagine there are many moving parts to a forum and sometimes divergent wishes of the members. I received a very strong complaint from a member. It is not my place to dictate what can be discussed on the forum, but I do need to listen to a member if they take the time file a complaint.

Before this complaint we had no intent to alter or remove this topic. This discussion was started by a member who received information about a diet that claims to help OT and wished to open a discussion about it with other members. Isn't this the correct place to have this discussion? Everyone should be able to freely discuss any topic concerning OT and this fit that requirement. The complaint requested that the discussion be removed.

In an attempt to make a compromise, I decided to remove the links and keep the context of the discussion. This would allow anyone to google/search for more information if they were so inclined, and I felt that this compromise might satisfy the complaint from the member.

Unfortunately this compromise was not accepted and instead he wished that the entire discussion be removed. As a result this member decided to leave the forum and remove his own posts.

I don't feel comfortable losing any members and I wish him well. As I mentioned earlier, a forum of this nature and the number of members has many moving parts and many people to satisfy. In this case, he was not satisfied and I personally would prefer for everyone to be satisfied with the content of the forum, but it is not my place to dictate the discussions.

The events of this topic should not make you hesitant to posting about OT. And possibly we can grow from this, and realize that the open nature of this forum is what gives it strength. Where else can you discuss freely with other OT members, your ideas, thoughts and experiences.

to - Sean -

Claims about blueberries or similar oversimplify the diet protocol we followed.

I apologize for picking on blueberries, but it was not mentioned in context to the Paleo diet. I didn't actually know that blueberries were a part of the diet. I mentioned blueberries because this has been a common discussion over the years on the forum and I believe the first mention was back in 2004. I had only used this as an example of topics that would seemingly be unrelated that have been discussed on the forum.

It is unconscionable that Admin would remove links to legitimate clinical research papers conducted by well respected researchers.

As I mentioned above, this was an attempt to make a compromise with a complaint that was issued. I would feel more distressed if the Admin (me) would not at the very least try to listen to a complaint from a member.

I hope that this has answered some questions as to the recent history and actions taken concerning this topic. I don't claim to always make the right decisions, but we do try to accomodate the members requests and maintain a forum whose goal is solely for the members.

My hope is that the discussion and forum can return to the focus on OT support, topics and compassion that due to the members (you) has always been the foundation of this site.

best regards,

admin

Hello "admin",

Thank you for letting the thread stay. I must have read everything differently for I didn't see ads for personal gain (which is not allowed I think) nor did I see claims for a cure for all (which definitively would have needed massive proof). I read a story, an anecdote, about something that had helped one person. And I found it very interesting - food being so very much part of the everyday life.

The forum is made up of our stories, our experiences and us sharing them - let's continue to do that.

respectfully
your golfnut

Above

Hello all,
I'm a bit surprised that there are not more posts in this thread.
I find it very interesting if something "as simple as" changing what I eat might influence OT. The idea of a dietary help seems much nicer than the thought of brain sugery or trying various chemicals/medications. I know the results mentioned relates only to one single person - but isn't there anyone else in this huge group that consider giving this a try? And if not - why not?

I am definitively interested!

Sean; without getting into details about any specific "trade-mark diet", can you say something about the main change in diet your mother had to make. I mean, what/how was she eating before?
In Scandinavia there has been a lot of debate about wholegrain, real fat (not lowfat substitutes) reduction of white rice/bread aso. Also about reducing prepared meals and the last year the main issue has been about all additives that are found in various products.
Did your mother eat a lot of prepared meals for example?

Best regards
the golfnut

Above

Many thanks Sean,
I have read quite a lot on several pages here and there - but it is so nice to read posts here too. And there are many of us reading here!


I have for a long while been on a reduced carb intake and I must admit that bread is a "hard nut to crack" so to speak. I love hard bread... but I manage without most weeks. Rice and pasta is less of a problem to leave out in my opinion.
Leave out all diary... hmm, creme fraiche, real butter and some cream for my coffee is in the fridge. And all legumes???? Oh - that needs consideration. Especially now as I'm on a train heading for a weekend at a vegetarian spa/hotel!

Vitamin D is already supplemented as my neurologist did a test on vitamins in the blood and suggested I add a bit extra.

So, lot's to think about.
(especially the strudel!! )

best,
the nutty golfer