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» LymeNet Flash » Questions and Discussion » General Support » Hello, a newbie here!

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Author Topic: Hello, a newbie here!
Lymieloo
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I didn't see a thread for new people so I hope it's o.k. to introduce myself here. I just found out I have Lyme, and may have had it since 1981-'82, when I noticed a colossal welt on my leg, surrounded by a red rash. In the middle of the welt (which was hot) was a tiny hole.

Before long it began to hurt like crazy and I ended up in the e.r., where it was diagnosed as a brown recluse bite. My leg hurt so bad for the next few days I had trouble standing for long. But it healed and I was o.k. for a year. Then one health problem. Then things like headaches for seemingly no reason, etc. A huge laundry list of progressively worse stuff over the years culminating in my becoming something of a semi-invalid.

And I've had two more of those bull's eye rashes over the years since...the last one being about ten years ago, although those two never hurt (or were as big) like the first. I don't know if I got bitten two more times, or if the rash was just popping up again.

It's been a hellish nightmare in some respects...but spiritually, an awesome journey. And I'm glad I found this place, because as you all know, NO ONE understands!

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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Lymetoo
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Welcome!!! [Smile] ARE YOU IN TREATMENT FOR IT??

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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-
[LymeToo seems to have posted while I was composing.]

I'll leave more cordial welcome posts to others who may have more energy, still, hope you find what you need here.

1. Do you have a good lyme literate MD or ND?

2. Have you found your local / state lyme support groups?

Must get that settled in case you are in need of locating one. At least Washington state is better than Oregon but it's challenge to find doctors, as you are well aware.

Good luck.
-

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lpkayak
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Awwwwwww. Thats when mine started too.

So...are you in tx. How can we help.

--------------------
Lyme? Its complicated. Educate yourself.

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hopingandpraying
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Welcome to Lymenet!

You didn't mention if you are being treated for Lyme, so here is important information for you. I also sent you some names of Lyme-literate doctors for WA.

You need to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!

Unfortunately, LLMDs are far and few between. You need to go where they are.

Also, most LLMDs do not take insurance due to the politics surrounding this disease. Read poster TF's explanation about this:

"Why Lyme Doctors Don't Take Insurance"
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=2;t=025539;p=0

Check the online state Lyme groups at:

https://groups.yahoo.com/neo/groups/WashingtonLyme/info

Maybe they can help.

Some more resources (including Support Group info):
www.lyme-aware.org/washington.html

http://www.lymenet.org/SupportGroups/UnitedStates/Washington/

The top LLMD, Dr. H, has written a new book entitled, "Why Can't I Get Better?". It is an excellent source of information.

Also read "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.

View "Under Our Skin" for free on www.hulu.com

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Lymieloo
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Thanks for the welcome and concern, everyone! Ipkayak, I'm not sure what tx means...unless you mean Texas? I'm in WA state.

A state I've always thought was a control-freak state, but so far has been supportive of the clean food/raw milk movement, and as far as I know, has not gone after any holistic docs. Unless you count those awful years in the early '90's when the Feds were keeping the country safe by raiding health food stores and doc's offices.

Keebler, Lymetoo, yes, my ND found a great l.l. doc who is also a ND. She has me on an herbal anti-viral and a prescription one, since in addition to Lyme she found I have Epstein-Barr and the virus that causes roseola in children.

Before my second app't to get the results, out of desperation I started taking essential oils -- even found a lyme protocol. I started improving within a week, and was much stronger by the time I saw her again.

She was really impressed and opted not to give me an antibiotic yet, as she said the e.oils ARE anti-biotic. She's going to contact the company's docs to learn more. I see her again next month.

Not that I'm suddenly fine, but at least I've gone from barely being able to walk to walking just fine, and sleeping much better, for the most part.

Can't work out yet though...about two months ago I started getting really weak and run-down after a workout, to the point where it would put me out for a week.

On Monday I made the mistake of trying to swim, and I'm still run-down from that. So no working out. Oh well.

..............................................

Breaking up the post for easier reading for many here -

[ 05-09-2015, 02:31 PM: Message edited by: Robin123 ]

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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TF
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If you have not yet done so, I strongly suggest you read the Burrascano Lyme Treatment Guidelines found here:

http://www.lymenet.org/BurrGuide200810.pdf

They will give you an education on this disease.

At page 31, he explains that a lyme patient must not do aerobic exercise, only non-aerobic.

You need to start doing weightlifting. Work up to a continuous one hour full-body routine every OTHER day. This is essential to boost your immune system. That is the only way you will ever overcome lyme.

Aerobic exercise lowers your immune system for too long. So, it is not allowed. So, swimming and walking are out.

Welcome to LymeNet! You can learn a lot here. Educate yourself, and you will do well. We will help you here all we can.

The Burrascano lyme treatment protocol is used all over the world. It consists of 4 prongs:

antibiotics
supplements
anti-yeast diet
exercise as specified above

I got rid of lyme, babesiosis, and bartonella by going to a doctor who followed this protocol.

If your essential oils substitute for the antibiotics, then just add the other 3 prongs and see how far you can get. Sounds like you have really made progress.

Good for you!

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Lymetoo
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Be very careful with the oils.

"tx" means treatment

(This Texan was thrown by that abbreviation for a long time!!)

Please read the info from TF.. she knows her stuff!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymieloo
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Hi hopingandpraying, thanks for the links, I'll check them out! It's amazing that my Lyme doc takes insurance -- she was the only one (who is a N.D.) in my part of WA who does.

TF, my main form of exercise was anaerobic. For the last two years I'd been going to the gym; first year was spent relearning how to swim (due to a most bizarre upper back pain, this took a year).

Then almost a year doing an anaerobic weightlifting routine -- sometimes called the Power of 10, or Super Slow Weight Training, and a doc featured on Dr. Mercola's site teaches the same thing (I think it's Dr. Phil Campbell).

I was also doing Dr. M's version (recommended by my regular N.D.) of interval training, he calls it Peak 6 or 8, depending on how many 30-second all-out cycles you do.

Despite all the years of dealing (unkowingly) with Lyme, I was really making headway with the Peak 6; I had gotten up to 4 when I got pneumonia. A couple months later, I got up to 5...then got the flu in Dec., missed Christmas with my family, etc.

Was sick through Jan., started back at the gym in Feb. Was working back up to where I was before, going slowly and carefully, feeling good.

Oh btw, I was only using swimming as a sort of physical therapy, because although I LOVE the water, I've never been a good swimmer.

So I can't possibly swim well enough to get any aerobic or anaerobic good out of it (I'm into anaerobic anyway -- it was the only thing that helped me lose weight).

But thanks to what I now know was Lyme, I've been having problems with my left arm and left side of my back cramping up in various places, and the muscles on that side of my body always seem tight and bound up, and they don't like to stretch.

Yoga helped that a lot, but an hour's yoga class was just too much for me. But swimming helped, too, plus helped my weak neck muscles (as if Lyme wasn't enough, I have quite a few whiplash injuries. Don't ask. I'm a target.) and psoas muscles which my chiropractor found "inexplicably" decided to tighten and cause horrible low back pain.

Hence, the swimming once or twice a week, in addition to the weightlifting and Peak 6. Believe me, it was slooow, easy swimming, and I was doing fine with all three exercises until a few months after I had the flu.

But the thing is, starting a couple of months ago, ALL three of these workouts make me feel the same -- that weak, run-down, almost sick feeling! The only reason I tried swimming on Monday was because out of the three workouts, this was the most mellow.

I had horrible reactions in March, after doing the anaerobic workouts I'd been successfully doing for a year. And I used to do those anaerobic workouts in 2010 and had great success with them...until some wise-*** decided to rear-end my car YET AGAIN (and tried to tell the cops I caused the wreck - hahahaha!).

At that time, my chiropractor (now EX-chiropractor) told me that my beloved new sport, mountain biking, would be fine, as long as it didn't hurt my neck. It didn't, so I rode, and had the time of my life. Until the day I woke up with a herniated disc in my neck.

Between that and the severe reaction to the steroid drops I had to put in my eyes after cataract surgery (for really crappy eyesight, not cataracts), I never really fully recovered.

Late last year, I finally thought I was on the road to recovery. Despite the pneumonia, then severe flu, I fought like heck and thought I was getting back on track with my workouts. Until all of a sudden, one day, after my anaerobic weightlifting.

Which is what's so mystifying to me! Maybe some of you know what's going on why it would be so sudden, but it just seems to me that this kind of thing would have happened a bit at a time, not all of a sudden. I emailed a questioned to my new doc about this but won't hear back until tomorrow.

So if any of you have any ideas, please let me know! And thanks again, all of you.

..................................................

Breaking up your post for easier reading for many here -

[ 05-09-2015, 02:29 PM: Message edited by: Robin123 ]

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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Lymieloo
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Ohmygosh Lymetoo, that's funny! I'm giggling like mad here. O.k., tx is treatment, think I've got it...although I may be forever stumped as to where the "x" came from!

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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lpkayak
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everyone here knows im in hyper-mold mode...but with your history of respiratory illness i would be sure your ND knows about it and also do some reading on mold theres a book Surviving Mold that is the newest by the doc that knows the most about mold then there is another group-newer- called real time labs that also know alot

recently they found out that many ppl with lyme who dont respond to tx have a problem with mold...its complicated...gene component and can stay in your system many years after exposure...some dont even know they are exposed

theres tons of info out there---google toxic mold or mold in body (as opposed to building) and see if anything sounds familiar

i wouldnt bring this up so early except you mentioned resp illness

theres a lot of things that can prevent you from responding to tx

it sounds like you are in touch with your body and have already found some things it likes

i diffuse thieves oil a lot ...

--------------------
Lyme? Its complicated. Educate yourself.

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Keebler
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-
Best to have a LLMD or LL ND who is ILADS educated for many reasons. Even if alternative approaches are used, they truly understand the science of lyme / TBD.

Essential oils are not likely going to be adequate in the full run. Sorry. They may help in some ways but you really need someone with a much broader education in lyme and treatment.

RIFE machine may be one treatment option that would fit but, still, I hope you can find a LLMD or LL ND with a much broader education in lyme.

And trying to work out right now can be a dangerous move.

Just "move comfortably" for now. With your injuries in mind, weight lifting is likely not wise. Forget the idea of a "work out" please. Just STROLL, walk at a leisurely pace, move about in water if you like but relax -

- this should not be a "work out" -- too damaging for the adrenals and the liver for someone with lyme at the stage you are at to think of it in old terms or that action packed event sort of thing. Go for consistency and gentleness.

See the links below for SAFE MOVEMENT considerations such as PILATES or QI GONG, etc.

Back to treatment that has a chance of working:

A good LL ND will know HOW to use antibiotics and other Rx as lyme may well require - but with key liver support, etc. Or with rife, etc.

When considering herbal / nutritional / adjunct methods, because lyme is so very complex & unique, as are possible coinfections:

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 )

so they really know all they can about the science of lyme . . . how lyme (& other TBD) act and what we can do about that in various ways.

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.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS-educated LL:

N.D. (Naturopathic Doctor);

L.Ac. (Acupuncturist);

D.Ay. (Doctor of Ayurvedic Medicine);

D.O.M. (Doctor of Oriental Medicine);

Herbal Safety considerations & reference books; etc.


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 with links to articles, books, methods . . .

BODY WORK methods / links (and why anyone who works on your spine MUST be LL to the degree they at least know to never suddenly twist neck or spine. Never. Ever. And that we should never be advised to do neck / head / shoulder stands.)

[ 05-09-2015, 04:12 AM: Message edited by: Keebler ]

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Keebler
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-
Many here have trouble reading large blocks of text. Just so you know. Paragraphs of no more than about 3-4 finished lines are best so that more can read and reply.
-

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TF
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When I got lyme, I SUDDENLY got EXTREME muscle weakness--meaning I could not stand for more than a minute, walk for more than a block, hold my mouth open to have my teeth cleaned, hold a phone to my head for more than 30 seconds, etc.

This went on for a number of months, then it suddenly left. But, it came back. Lyme did this to me off and on for 5 years before it came and stayed permanently.

So, this disease is capable of anything.

The extreme muscle weakness is due to lyme attacking the nervous system. One day I was climbing 6-story Mayan ruins and the next, I was unable to stand for more than a minute.

You really need to study the Burrascano Guidelines. And, study carefully the weightlifting requirement. Do exactly as it says. You must rest as it says until you recover from the 1 hour. That could take 4 days or so.

You are suffering from what is known as post-exertional fatigue. This is a practically universal symptom with lyme patients.

The 1 hour of weightlifting must be GENTLE, but it must cover all muscles--arms, legs, chest, back, abs, etc.

This is not like any other workout you have ever done. It WILL work. But, it must be combined with all of the other elements of the protocol.

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Robin123
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Hi and welcome! I don't have time to chat now - can later - please break your posts up into a couple lines at a time as many here have a hard time reading blocks of type - thanks -
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Lymieloo
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Thanks everyone, I will check out Dr. Burrascano's info.

Ipkayak, I don't have a diffuser, but that's o.k., as the oils I use are so pure they can be taken internally.

I use three drops each in an empty capsule 2x/day: oregano, thyme, clove, cassia, and tea tree.

Sorry about the large blocks of text! [bonk] Trying to do better.

You've all been super helpful, I'm so glad I found this board! I have a lot to learn. Thank you all so much.

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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randibear
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sorry to hear you're joining family.

they are a good group.

--------------------
do not look back when the only course is forward

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Keebler
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-
As you have had more than one recent whiplash, lifting any weights that stress your neck could be dangerous & cause damage, though.

Best to be first assessed by a LLMD who can tell you more about how to process with that sort of thing - or anything that involves your neck.
-

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Robin123
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Hm, 1981, 1982, that was around the time I started too - I can relate...only no rash here at all, ever. Just a known tick bite.

Symptoms change all the time. Best to study what the bacteria do so you can understand your symptoms. Affects nerves bigtime, the brain, it can corkscrew into tissues.

Tight muscles need magnesium to relax. You might want to play around with various versions of it and see what you respond to best. One of them is called Natural Calm - it's a powder. When I first tried it, all my muscles went limp, and then I got sick from it. So go figure. Now I do mg glycinate.

We're all different in what works for us, so just keep that in mind as we testify here! I'm one for whom swimming has worked well. I use the pool to do stretching in, with light lap swims inbetween all the stretching.

I used a torso float in the beginning to hold me up but don't need that anymore. I also wear a snorkel and goggles so I don't have to lift or turn my head to breathe.

Re the X, I'm guessing it resulted as a run, as in rx, dx, and by extension, tx. We also have abx - antibiotics.

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lpkayak
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I use the diffuser to keep my house free of mold and now that i have broncitis sx it stops my wheezing

--------------------
Lyme? Its complicated. Educate yourself.

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aimeefae
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I got thyroid disease as part of the Lyme package.
So many different body systems have been affected.
I have a good ND working with my endocrinologist to prescribe herbs, supplements, etc to address all my issues . Pay close attention to your body and mind because almost anything can happen with Lyme.

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Lymieloo
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Well obviously I'm still learning how to navigate around here (and doing a crummy job of it!), because I didn't realize there had been any more replies to my post.

I hop on here pretty much every day, and I click on "Today's Active Topics", but somehow missed the last several replies. Also, I don't know how to get to my p.m.'s.

Someone p.m.'d me my first day here and was kind enough to include some links which I couldn't check out at the time. But once I had the time, when I came back on here I couldn't find how to get to my messages.

Technologically challenged, I guess. If anyone can point me in the right direction I'd be grateful!

Robin, when you got Lyme back '81-82, were you living in CA then? I'm wondering because I wonder when Lyme made its way to the W. coast. I wonder if it was even in WA then.

But I lived in MN from May to Oct. '80. Is it possible I got bitten there, but didn't get a rash for 9 months or so?

Ipkayak, I would love to get a diffuser. Not only to keep mold at bay, but there's an oil blend I want to diffuse for hubby, in hopes that it will make his chronic cough go away. He's had it for years and no, he won't get it checked out. [loco]

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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TF
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To check on your private messages, just click on "my profile" near the top of the screen.
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Lymieloo
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Thanks TF! I'm such a lymehead. [Big Grin]

--------------------
Bless the Lord, oh my soul. -- Psalm 103

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Tincup
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No, not a Lymehead (if we excuse the Tx thingy of course)... you are a wild child. From now on that is your name here.

[Big Grin]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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BTW- (That means- By The Way)...

Do you all do something special to remember the Mt. St. Helen`s eruption and its victims in WA (that means Washington)?

Such a bad event it was.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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GretaM
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Welcome to lymenet, Lymieloo.

I like your sense of humour

[group hug]

Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013  |  IP: Logged | Report this post to a Moderator
   

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