posted
This coming Friday, May 10, is Worldwide Lyme Protest Day, and I'll be attending the Protest/Rally in NYC's Union Square Park. Even if I'm tired, herxing, have a headache, (insert lengthy symptoms list here) - I really have to go!
Please share what helps you get the energy, mental clarity, stamina to get to and through those events you really HAVE to show up for! Any supplements that help? What do you take or do or bring so you can function?
Since there are protests happening that day in 29 countries and 25 US States (wow!) I'm sure lots of us here are wondering how we're going to drag ourselves out and get through the rallies.
If you weren't aware of all this - please click over to the Activism board for links to all the Worldwide protests being held!!
Thanks! Dancer
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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posted
Dancer, I know many friends bringing those cane/seats. Sunglasses, visor - if sunny. Supplements - oh boy...different for everyone!
Posts: 67 | From New York | Registered: Dec 2005
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posted
VERY EXCITED though for first time ever LYME DISEASE RALLY UNION Square, NYC on Friday!!! 12-4pm! Supposed to be decent weather!
Posts: 67 | From New York | Registered: Dec 2005
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Thank you for going to the protest.
I like Researched Nutritionals Energy Multiplex- A particular formulation of adrenal support.
Don't know if you can get it in time, also a little pricey. People on here were also praising
Gaia herbs Rodiola Rosea herb, which I've seen in health food stores, never used.
Coffee, of course. Thanks again for going, just do what you can, perhaps have an exit strategy if too much.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
I think that maybe the day itself will boost energy. We have been pretty downtrodden for quite a while. THe icing on the cake was when the government just went ahead and re-approved the IDSA guidelines that say there's no such thing as chronic Lyme disease. I do get annoyed that they say I don't really exist.
But the thought of this historic event is giving me energy. It is very exciting. Lots of coffee and NT factor help. But mainly it's the thought of this glorious day, after which I can collapse for a while in the happiness that I've done something important. Ellen
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Posts: 819 | From New York, NY | Registered: Oct 2001
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sparkle7
Frequent Contributor (5K+ posts)
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posted
You might want to try some kratom. It's an herb that has some very beneficial qualities for people with pain & fatigue.
You can do a search on google for it to find out more. I don't sell it or make money from referring it.
It has helped alot of people.
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Keebler
Honored Contributor (25K+ posts)
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posted
- Please. Do not try to "boost" energy for that could cause damage. Even "lots of coffee" can have disasterious results for day, weeks, even months later from the damage to the adrenal system, the heart and the nervous systems.
GREEN TEA would be a more balanced approach as it has a gentle lift but also an ingredient that will not zoom you to the moon and crash.
Support is good but please, do not try to boost anything. Ever. Balanced approaches to help with endurance:
EXERCISE INTOLERANCE is (partially) explained in the article: "when exercise doesn't work out" (and what we can do about that - even for a one-day event)
CARDIAC, MITOCHONDRIA & MYELIN SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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sparkle7
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posted
PS - thanks for posting this. I didn't know they were having a protest. I'm happy they are organizing something like this. I hope it will get some publicity.
Keebler
Honored Contributor (25K+ posts)
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posted
- Even for short term, or for issues involved in getting through a one-day event:
When considering herbal / nutritional / adjunct methods:
if at all possible - because each person & each case is different - it's best to consult with an ILADS-educated LL ND (lyme literate naturopathic doctor) (or similar) who has completed four years of post-graduate medical education in the field of herbal and nutritional medicine -
- and someone who is current with ILADS' research & presentations, past and present, and has completed the ILADS Physician Training Program (see: www.ilads.org )
Many LL NDs incorporate antibiotics (depending upon the licensing laws in their state). Some LLMDs and LL NDs have good working relationships.
When possible, it's great to have both a LLMD and LL ND and even better when they have a long-standing professional relationship.
Integrative / Holistic M.D., etc. (Be aware that those in this category can have various levels of formal herbal &/or nutritional education, perhaps even just a short course. Do ask first.)
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures from all corners of medicine;
knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL & SAFETY links . . . . -
[ 05-07-2013, 01:44 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
I wasn't even aware of this event. I will be in Chicago that weekend for a commencement but look forward to getting involved. Will anyone else be in Chicago?
Posts: 478 | From Third Coast | Registered: Feb 2011
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posted
If you didn't know about this event, then please be sure to check GENERAL SUPPORT and ACTIVISM more often. Announcements about events are always posted in those two places.
jus sayin
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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First of all, Jaykay, I really did not think of those cane-chair things, me use a cane? But vanity be damned - I know that would be a convenient thing to own.
Surprise - thanks for suggesting Adrenal support because it reminds me I still have not seen an endocrinologist! Rhodiola rosea - excellent idea. I have used it in the past and can get that easily. Back before I was diagnosed, it was the thing I'd take so I could get myself out of bed.
Ellenluba - yes - come to think of it, I managed just fine to get through rallies in the past, because the energy of being together with everyone was very empowering! Though I do remember lying down on the sidewalk waiting for the train that time after Westchester protest. And lying down on the train coming back from Long Branch. lol!
Have more replies to read.... more to follow.
Please keep suggestions coming y'all!
[ 05-08-2013, 03:03 AM: Message edited by: Dancer ]
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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posted
Ellenluba, is NT Factor something you need an Rx for? Or maybe I'm confusing it with something else?
Sparkle - I've never heard of Kratom, thanks for the link, I'll check that out. I looked at the page quickly sounds kind of strong, but I'm glad to know about it and will bookmark.
Keebler, you are a geyser of information. Thank you so much. I hear you about not overdoing it. I definitely can't tolerate much coffee. I do remember reading that Rhodiola increases energy production at the mitochondrial level and I think it's pretty safe. Green tea - good idea. Exercise intolerance - I'm one of those people who on a good day can do dance aerobics and run up and downstairs doing housework, and on a bad day, it's draining to just sit upright. This is such a weird disease. (The energy variations may have to do with my being a rifer and the cycles of my reactions to whatever frequency sets I run. Sometimes I get the most fantastic energy day the day after rifing, and then herx the following day, but other times the herx comes right away. Too unpredictable - no rifing for me on Thursday! )
Thanks for posting about sleep and adrenals - my sleep cycles are out of whack and I keep meaning to get an endocrine workup. Bookmarked all this for further reading. (I knew I would learn alot from this thread
More reading....
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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posted
Keebler, thanks also for posting about LL ND's etc. I don't take abx anymore, so that's not an issue for me with health provider selection. But I have been wanting to get a work-up by someone holistically oriented to see what I can improve upon. It's just so hard to keep paying for docs that aren't covered by insurance. Well... the more we get out there and protest, *hopefully* the more attention we will get for research, better healthcare, and a CURE Posts: 227 | From South of the North Pole | Registered: Jan 2007
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posted
BorreliaBrain, would you consider getting one of those cane-chairs? I think they'll be allowed, while regular chairs aren't. I know I know, but hey, we're sick, and why be miserable? I was also thinking to bring a small rolling suitcase (with green tea and rhodiola and healthy snacks inside!) And then I could try sitting on it and see if they let me. If I sit on the ground, is that against rules? I'm imagining a bunch of sick people getting arrested for resting on the ground! Could be an adventure and good publicity. But I'll probably go for the safer cane!
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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posted
Dancer, that store surprise surprise - i bet they have those cane chairs - OR those tiny folding chairs - if they allow that (maybe they don't). Wheelchairs are allowed - if you know anyone with extra one?
Posts: 67 | From New York | Registered: Dec 2005
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posted
Dancer, that is so funny a bunch of sick people resting on the ground.
I'm herxing from just starting IV Zith but really want to go. Thought of bringing a folding chair but Ellen says that's not allowed.
Park has some wheelchairs or park benches. Which will all be occupyied.
Can we double up in the wheelchairs?
I have serious gut/colon issues and cannot take vitamins orally at this time. So what does one
do for stamina ? Coffee is a no no for me.
Will they arrest us for passing out there? Or is that to be considered as resting on the ground?
-------------------- RI Posts: 440 | From New York | Registered: Sep 2005
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sparkle7
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posted
Dancer - I find kratom to be extremely helpful. I have had chronic pain & fatigue for a long time. It can be strong but you can take a small amount & ramp it up to see if it helps.
I would avoid any of the kratom that advertises itself as "legal highs" or extract form. Look for the actual plant form.
it may not be for everyone but it's a great herb & should not be discounted or demonized. It can be very helpful for many conditions. Obviously, the drug companies want to keep it a secret or make it illegal. It is illegal in a few states but there are organized efforts to keep it legal & battles have been fought in several states to have it removed from being banned.
If you take took much it may make you feel nauseated & a bit weird but it wears off in a few hours. The proper dosage can be quite helpful for a number of ailments. People also use it to get off opiate addiction but it helps for pain, low energy, mood & a number of other things.
Just start off on a very low dosage if you are sensitive.
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Rumigirl
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1Hmmm, this is a good reminder----what AM I going to do myself in this regard?? The sitting/standing is a BIG issue. I do NOT do well with standing long, passing out comes next! Are little folding chairs allowed? If not, where do you get the cane/chair thing? Esp on short notice.
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glm1111
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posted
Coconut water
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
Sparkle - thanks for the info. I will read up. Sorry about your pain and fatigue but I'm glad you found something that helps you so much
Rumigirl - the cane/chairs (I think they're called Seat Canes) can be found at surgical supply stores. I was almost convinced to get one, but they seem to be around $40... more research turned up a little tripod folding camp stool for $22 at REI.com. I'm going to call a local REI store to see if it's in stock. I can understand the park not wanting people to have actual chairs - takes up too much space. But I doubt anyone would hassle me over a tiny stool that fits under my butt. Hope not anyway.
glm -- Coconut water - I've just started buying that lately. Great idea. And there is a Whole Foods right across the street from the protest site for healthy snacks
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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Sometimes it feels like I'm too sick to work hard enough to even put a dent in my disease, much less cure it Posts: 194 | Registered: Jul 2005
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I always find my perspective varies dramatically depending on whether I'm having a good or bad Lyme day. When I feel bad things seem so unmanageable, but on a good day, I'm full of enthusiasm and positivity and I can't relate to the bad days, like they were a dream.
Hang in there BorreliaBrain, better days are coming! We are going to beat this thing!
Posts: 227 | From South of the North Pole | Registered: Jan 2007
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I was not planning on going, but I saw my LLMD today and it turns out that he is emceeing the event and will be giving a speech as well.
I was given the riot act about how I should go to the protest if I could muster the energy to go and that every person attending counts and is extremely important.
So, I am going to try to get a good night's sleep, a good breakfast, and will make sure to bring lots of water (I've already scoped out the starbucks and barnes & noble nearby so I can go pee if I have to).
But I hadn't thought that far ahead about having a place to sit
That would be funny, though, if all of us sickies wound up having to sit on the ground, en masse!! What a sight!
Well, I guess I'll have to develop an exit strategy myself!!
Good luck to everyone who is attempting to go!
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sparkle7
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Thanks Dancer! I'm not able to go today but I hope it will get publicity.
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lpkayak
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They won't let you sit on the ground in New York City they move you along with big sticks
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