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» LymeNet Flash » Questions and Discussion » General Support » Afraid LD will take away music

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Author Topic: Afraid LD will take away music
fred0
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Hi. Here to drop by and ventilate:)

I'm a huge music lover and guitarist or was a guitarist?

Lately I made a big effort to get back into playing guitar, well at least semi-professionally.

After practicing like crazy I did two gigs on a weekend in last Febr. with the hopes of a new promising direction in music.

The next morning after the gigs I woke up in the morning with Tendonitis in both of my forearms.

I've been playing for decades and have never had a problem with Tendonitis from guitar.

Now I've been unable to play. I'm starting to believe it might have something to do with Lyme.

I was diagnosed as some of you know last year with Lyme although I got bit 30 years ago and went from a highly competitive athlete at that time to being hospitalized.

Last year I started treatment for Lyme disease.

Unfortunately it didn't go well.

I had further very expensive blood tests done here in Europe and the results came out very confusing and a bit contradictory.

That didn't generate a lot of trust for me in my ILAD's Dr. nor the lab where the work was done.

I tried Doxy for about 6 months. Ended up self treating a bit because here where I am in Europe treatment only can extend to 4 months in 3 cylces.

After being somewhat uncomfortable with the next recommended abx that I was to take I decided to forget it.....since the Doxy treatment did nothing except make me feel worse after I had finished.

It was too late, I had already lost my confidence in my treatment. Everything was just too, 'hokey'.

I have given up on treatment here because nothing was really clear or gave me confidence on how to fight this disease.

Yet, now it appears I'm slowly getting worse. I've stayed on a non-gluten, sugar, lactose diet that has contributed to making me weaker and I don't run and excercise like I used to.

It hasn't helped in relieving any of my neuro systems or anything else except my Gut problems to a degree.

And now I'm worried that I might lose the thing I love----playing guitar. It is my therapy.

If that happens I don't know what I'll do.

I'm trying to keep positive though and believing with proper care and maintenance of my arms I will play again but it's frustrating to get knocked down again.

I also suffer from Tinitus which is a killer for musicians. ....but I can't quit.

Just ventillating. thnkx for listening:)

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TLDB
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I also am a big music lover, and an avid guitar player at that.

I started playing guitar before I contracted Lyme Disease and whatever other coinfection came along for the ride; I got really into it.

However, It became self-evident as the Lyme Disease progressed, that not only was I physically unable to play in the manner I used to, but I had since lost the passion for doing so.

Fast forward to today, and the passion, and the ability to play greater than I ever could before, has returned. It's slow, but progressive.


Also consider that the Lyme bacteria enjoy consuming collagen which is the main constituent for your joints. You need to work on collagen repair.

I did doxycycline in the beginning but it did nothing for me. I switched to alternative medicine, specifically the Buhner protocol. I'm not in remission yet, but damn near close.

I feel I'm closing in on the infections. Energy has returned, I'm working again, and many symptoms have dissipated and yet to return.

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lpkayak
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i am so sorry...i'm just a listener...not a player but i need music so much in my life and it is one thing so far lyme hasnt taken...the listening that is. i dont take that for granted becausue i know many cant tolerate sounds or become deaf.

my things are riding horses, kayaking, gardening and reading and i have had to modify and adapt to all of them because of lyme.

i got really creative and had special mounting block and paddles made. i cant read books-hurts my hands too much to hold them-but can read a kindle.

my point is i hope you dont give up. i hope you can be creative and figure out a way. my favorite has always been acoustic guitar music...i dont like the "computer" music at all...but maybe you can find a way to still do what you love even tho your body isnt cooperating.

good luck.

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

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fred0
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thanks everyone.

lpkayak, I'm playing and really into acoustic music as well.

I will find a way to keep playing, thanks.

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Lymetoo
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UGH, Fred. I feel for you. Maybe with proper treatment, you can get the inflammation down and then get back to playing.

I used to play clarinet, now I sing. My husband is a professional musician. So I know of what you speak and how painful it would be to lose that!!

Do you write music? Can you play keyboard? Maybe you could switch instruments? Guitar has to be rough on the body!

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

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lax mom
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Regardless of what happens with Lyme and/or treatment, you will make a way.

http://blog.phillipscollection.org/2012/07/27/the-pain-passes-but-the-beauty-remains/

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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Robin123
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Yeah, I know what you mean. Us and repetitive anything is a challenge.

Maybe not think of it as LD taking away your music playing, but that you need to modify the way in which you do it.

Like don't take solo gigs but instead share a set, pace your practicing and discover your time limits before you start hurting and then do just that much, etc.

Perhaps you could experiment with some more supplements, like Ultra Body Toddy that has 70 minerals in it; like biosil, which is supposed to be good for joints; like glucosamine sulphate, again for joints; and anything else anyone here can recommend.

When I test something, I test one thing at a time to see whether it's having any impact.

And take anti-inflams like mangosteen juice, noni juice, grapeseed extract capsules, etc.

And any further Lyme treatment, if you need some more.

You know, Fred, I just reread your post. My opinion is that you might benefit from making a post in Medical about how to treat Lyme that we could discuss with you. I don't think you've treated it, and I think that you would benefit from a treatment discussion.

If you can figure out how to better treat your Lyme, you might, not promising anything, but you might regain some more ability.

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Keebler
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Just talking about this aspect, you say that you have

" stayed on a non-gluten, sugar, lactose diet that has contributed to making me weaker . . . " (end quote)

There is absolulely no need for a diet free of gluten, dairy or sugar to make anyone weaker. Now, you may be weaker because of the lyme - &/or lack of enough food to fuel you.

First, are you sure you are gluten-free? It can hide in lots of things.

Next, free of food additives, especially artificial sweeteners and MSG (in all their names)?

I'm wondering if you are eating ENOUGH foods and getting the wide range of nutrients you need from the three main food groups: carbohydrates (complex, of course); protein; & fat.

My guess is that you are not. So many make the mistake of giving up breads but not then turning to WHOLE GRAINS and SEEDS that are naturally gluten-free. These include:

Amararanth

Buckwheat Groats (whole)

Millet

Quinoa - regular (light tan); red; black

Rices - Wild, Black, Red, Brown (not white)

These would still be just a small part of a meal with veggies the main attraction, even for breakfast. Some good protein and fat with every meal and snack.

This is just a small part of it all as I can't even touch the elephant in the room:

If you have lyme and it is not adequately treated and symptoms are getting worse, they will continue to do so, most likely.

However it's done, lyme & other possible coinfections MUST be adequately addressed.

DO NOT CONTINUE TO PLAY GUITAR IF IT HURTS. Permanent damage can occur. I've been through all that, believe me. Do not play if it hurts.

Attention to lyme, resting the injured body parts, THEN, only after the tissue is healed: learning new techniques, a new instument, etc. . . .

Google: Flip Breskin

she is as guitar instructor in NW Washington state that has studied and teaches proper ergonomics for guitar after she had been forced to give it up for some time. She did not have lyme, yet, the techniques she teaches are invaluable for everyone.
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Keebler
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http://flip.breskin.com/

Flip Breskin

Scroll down for "ergonomic guitars" but also contact her, directly.

She is brilliant and a wonderful person who wants to help musicians. Her ergonomic course may be something she could send you. I was fortunate enough to attend a few classes with her over the years at various music camps.

She has a world-wide following of sorts and may actually know someone near you. Be aware that most physical therapists do not have the skill set as Flip does in all matters.

Still, lyme must be addressed, of course. Certain supplements can help but unless lyme is addressed, nothing is going to help enough.
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Keebler
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I thought you lived in Austria. Have you moved to California?

Do you need some LLMD &/or LL ND (naturopathic doctor) suggestions - other ways to address lyme or take another look at coinfectoins, parasites, heavy metals and all that goes with "lyme complex"?

Rife or Bionic 880 detail?

Just click onto your screen name to see previous threads where some of that was posted for you earlier (but before you must have moved to California). If you need anything else new, just say so.

I know it's all very complex, you are not sure of how to interpret tests, etc. but it seems that you need an excellent LL professional to help you sort this out. Most LL doctors know about all kinds of chronic stealth infections, too.
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Lymetoo
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quote:
Originally posted by Robin123:


And take anti-inflams like mangosteen juice, noni juice, grapeseed extract capsules, etc.

And any further Lyme treatment, if you need some more.

You know, Fred, I just reread your post. My opinion is that you might benefit from making a post in Medical about how to treat Lyme that we could discuss with you. I don't think you've treated it, and I think that you would benefit from a treatment discussion.

If you can figure out how to better treat your Lyme, you might, not promising anything, but you might regain some more ability.

-
I agree with everything Robin wrote, but especially the above!

Add curcumin to the list also!

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

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fred0
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Hi Keebler. No I still live in Austria.

Not sure what to think about a 'specialist' or if there is one in the area.

It appears that everyone is just taking a shot in the dark and again I was just giving out tones of money ( it started w/ abut a 500 euro test which didn't tell me anything new) for purposeless things.

I was seeing an ILAD's Dr. here but it kind of fizzled out. He's the only one.

I admit I was also not a very good and compliant patient.

Somehow I lost confidence in the whole thing.

I felt since it was just a shot in the dark I might as well self treat and save on 70 euro Dr. visits.

After all I can imagine Lyme is a great cash crop to make money on the weak and desparate.

It might be with good intentions but I don't recieve everything as factual:)

I don't mean to say I think this Dr. was dishonest, on the contrary. He really wants to help folks.

Just spreaking in generals.

I stopped going to this Dr. after the doxy wasn't doing much.

He advised a change of abx of course which is normal.

I became a little concerned about the risks and side effects of these abx and just backed out.

I'm especially sensitive about the effects of abx on my ears since I have loud Tinitus already and I'm a musician still trying to play.

I guess I considered the risks of living with Lyme compared to the risk of making it worse if I poison myself with abx or whatever....so I decided for now just to live with it.

I didn't want to get so sick that I couldn't work and become even more depressed staying at home.

I had to this stuff for so long now.

The only problem is now I've got tendonitis in both arms.
It appears Lyme wants to bring me down further.

I've never hurt myself before from playing.

This Fall I might consider giving the Dr. another shot and try some new abx.

But anyways, he will only treat for a 4 month cycle.

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Robin123
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Why is he only treating for a 4-month cycle? Lyme doesn't work that way. We treat until we're feeling better. It's open-ended.

Do you have any other Lyme-treating doctor options in Europe? Have you checked with ILADS? Have you checked with any European Lyme support groups?

And it's not just antibiotics, although they can certainly be a part of treatment. It's also bloodtesting you to see how your adrenals, thyroid, liver, Vit D levels etc are doing and putting you on supplements. It's a comprehensive care protocol.

Treatment is: killing/deterring the organisms, detoxing, and fortifying the body. It takes some research to understand this. You can even use the Search function at the top of the page to type in any word or phrase and read what people are doing.

We're all different in what will work for each of us. If we find that out, we improve. That's what we're aiming for.

Some people treat with the Buhner herbs - see his book, "Healing Lyme."

I made a dent in my tinnitus once when I did treatment with a PEMF machine - pulsed electro-magnetic frequency machine. We hold a white coil as it emits e'm pulses in the 400-700 gauss strength range.

Maybe folks in wholistic health could have the machine available - you'd have to call around and see whether anyone in the health field has one.

My tinnitus would quiet down completely for 6 hours afterwards. I asked a top LLMD about it and they said it probably quieted down the nerves to the ears.

Next thought I have: since you are originally from here, have you given any thought at all about returning to the US to do treatment with a Lyme doctor of your choice?

It's going to work like this: 1)treat the Lyme 2) play music again, the way you want to. So I think you need to reflect more on what we're all telling you here, which is, Lyme treatment comes first, and how are you going to handle that?

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fred0
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Robin- He simply told me he's only allowed to treat that long.

He does do a two cycle protocol-- each lasting about 3-4 months if needed, so you get two tries:)

Maybe this won't be appreciated here much but I didn't necessarily have a great experience with the ILADS side of things, anyways no much more than I had a good experience with the CDC side of things.
note* except some understanding and empathy which is big.That I appreciate.

But I am talking about the diagnosis/tests, teatment, etc..

I guess that's why I said it's a shot in the dark for me.

Yes, maybe I'm pretty skeptical but I've experienced a lot in my time so I tend to be overly cautious about these kinds of things.

Especially when I'm unable to work full time so my wife has to pay for everything.

But, honestly I didn't have a very good experience with my diagnosis with ILADS Dr.s nor did have a good experience at the ILADS conference I attended here in Austria last year.

I know there are two sides to every story, but it's just my experience and I have to do something with that.

That being said, I'm quit confused as to which direction if any I will take in the future.

I simply don't know??? I don't think I'm alone on that one.

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lpkayak
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re: renoir....WOW!

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Lyme? Its complicated. Educate yourself.

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lpkayak
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ppl from the states go to germany...ppl on here go to germany...and maybe other places...maybe someone will search that and post it here-it would be impossible for me so i dont pay much attenetion

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

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Keebler
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-
It's the Bionic 880 treatment that many seek in Germany - and this has been excellent for many.

Bottom line: you can be skeptical about lyme, dismiss it, ignore it, not want to be involved in anything so complex but if you have lyme, lyme does not care what you think or do about it.

Borrelia's job is to destroy. Well, actually, that may not be its "job" but it's surely the outcome in how it does what it does.

You say you are weighing the "risks of living with lyme" - well, I've been doing that and it's destroyed everything about my life. Unable to go anywhere - anywhere now for over 4 years. Pain, seizures, hyperacusis, vertigo, inabilty to function at all other than a few posts here a day so that others don't wind up as I have, etc.

I'm not saying all this to scare you. Rarely do I ever talk about my own situation but there are times when a glimpse of the truth about "living" with lyme is vital to see - and it's not pretty at all. It's a horror that I dare not even try further to explain. I do hope you will take my word for it.

Also know that lyme can cause permanent damage and even be fatal if not addressed.

Our job is to pay attention and find the best ways (and experts to help) as we move forward to acheive our goals in life & love.

Now, we may not all have the funds we need, of course. Still, even on a tight budget, there is always some way to be proactive. You must be proactive as best you can.

Lyme is never "just" lyme and there is never any one way that works for everyone. I will say that if I were just across the road from Germany, I'd sure want to investigate that as an option.

A few years ago, I thought I might be able to get enough money and gave this much thought and study. The money did not come through but, still, I've followed those who did so very well with this approach.

SixGoofyKids attributes this as the key to finally achieving her solid success over lyme. She has been well now for over six years, no symptoms. [Normally, I don't like to speak for others but this seems important to do so in this context. I hope I got that right but also hope she might come along - do find her posts about this, and see her blog.

It may actually be just found by a web search of: "sixgoofykids" lyme
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Keebler
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-
http://lymebook.com/bionic-880-photon-woitzel-germany-pe1

BioPhoton Treatment with Dr. Woitzel (Germany)

Full Sample Chapter - from book: Insights in Lyme Disease Treatment, by Connie Strasheim


http://www.blogtalkradio.com/parkinsons-recovery
Scroll down for several links about Biophoton Therapy

&/or

http://www.blogtalkradio.com/parkinsons-recovery/2013/01/16/how-biophoton-therapy-helps-the-body-heal-itself

How Biophoton Therapy Helps the Body Heal Itself
- Jan. 16, 2013


http://www.blogtalkradio.com/parkinsons-recovery/2013/01/09/biophoton-therapy-with-johan-boswinkel

Biophoton Therapy with Johan Boswinkel

Parkinsons Recovery


http://odewire.com/105378/standing-in-the-light.html

Standing in the light | OdeWire - Aug 3, 2011 -

How Johan Boswinkel is using biophotons, the faint light waves emitted by cells, to help the body heal.

The Medical University of Graz in Austria added Boswinkel's biophoton therapy to its complementary medicine curriculum in 2007.


And see the many threads here at LymeNet detailing personal experience with this method.
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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/117402?

You posted 16 May, 2012 - in "confused by all these tests" that

you "tested positive on an Elisa test and Westernblot done at a 'normal lab' here in Europe." . . .

. . . under the CD57 score it said,' that there appears to be 'suppressed' CD57 in possible connection with chronic Borrelion...' . . .

. . . tested high for Microplasma pneumonia (50.4) . . .

------------------------------------------

LymeToo's reply then [which advice still holds for today]:

A positive test is a POSITIVE test.. do not ignore it!! Not everyone gets a positive from Igenex... I didn't .. yet I treated and am well now.

A positive test along with a low CD57 is saying something to you!

Mycoplasma ( I guess this is what you are referring to? ) .. can be acquired thru a tick bite, but also in other ways. Can be airborne.

A low MCHC may indicate babesiosis (babesia) .. a coinfection of Lyme.

(LymeToo)
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Keebler
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This may help explain how/why lyme can become chronic:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=120369;p=0

Topic: replication within cystic forms of lyme

------------------------------------------

To honor those whose lives have been cut short by tick-borne disease:
------------

http://www.lymememorial.org/

The National Lyme Disease Memorial Park Project

A living memorial for associated tickborne fatalities

-----------------

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/3/16292?#000000

Lyme Disease Obituaries

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And, remember that many do make it. Some share how:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=015820;p=0

Success & Progress posts

---------------------------------------------

To go back to the other informational links posted for you when you first came here, just click onto your web name, and see your posting history. Then click onto "topics started"

All the links are still there for you but, ultimately, I hope you can find expert guidance and know that many have gotten better.
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Keebler
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Other tick-borne infections (included parasites) need to assessed.

Mycoplasma also needs to be addressed. Many LL experts will know about that but not all. It's vital to not miss this opportunity.

Search: Garth Nicolson - he's the primo researcher in this area.
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Keebler
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It's best to refer back to all the links previously posted for you but want to be sure you have this. As you convey trouble tolerating certain drugs, it's key that liver support be on board before and always to help better tolerate treatment:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=030792;p=0

LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
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fred0
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I understand what you are saying Keebler.

I understand that probably being skeptical and doing nothing won't help me long term.

But I think you have to be a little skeptical or cautious because so much of the Lyme experience is subjective.

And when something 'doesn't work' for us, we have to carry the costs and pain of further dissapointment as we watch hope and our wallets float away.

For most of my life now (and I'm 46) that has been my experience.

I have heard some good testimonies of light therapy but I have also heard some harsh questioning and critique on it.

To me it kind of looks like they wouldn't mind if you end up needing to buy one of these machines to take home in order to really get better.

But I will research it some more. I can do that here in Vienna under my former Dr.

Actually he offered it to me for 70 euros per session.

My former Dr. works closely with the clinic in Germany.
That's where he gets his protocol and that's where he sends all blood tests to be done.

That's why I'm a bit at a standstill.

My tests were done at the lab in Germany.

And I think since they asked around 600 US dollars for their test results that they would've had enough sensitivity to really counsel me through it and give me a sense of feeling that there was a game plan.

I felt that they were also unsure of my test results so they tried to quickly forget about it, not talk much about and just try a 'shot-gun' strategy to hit something.

I think there was also some embarrassement on their side knowing I had paid so much for their test and not getting much of anything.

I think if they talk so confidently about the shortcomings of the IDSA (which I am also against), then they should show soemthing different.

I know I sound like a tight-wade always bringing up expenses.
But let's admit it. Lyme D. is a great business.

It's the patient who ultimately suffers and I bet there are tons of people like me stuck between two fueding parties and tons of different books and merchandises all promising answers and relief.

enough venting. I will probably try once again with my Dr. here since it's close.

I know I'm not an easy patient and I didn't try things.

But I am extremely sensitive to meds., supplements, even light things.
That's why I didn't want to try other abx.

I have a severe eye, muscle contraction problem.
When I take abx, meds, vitamins, my eyes just strain, bugg out severly.

We'll see. Thanks for all the help and sorry I write so much.

It's just my way of venting I guess.....and I'm on anxiety meds.

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Keebler
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Do not be sorry you write so much. Keep posting as along as you want / need to do so. Always. About any aspect of any of this. It's important that you have free access to say whatever you want to say.

If you sense frustration on my part, it's not that you "write so much" but it's not clear that you've been able to really learn about the science of lyme and all that goes with that.

Have you read Pamela Weintraub's book "Cure Unknown" ? THAT might help with understanding more about the science of now this works and why a shotgun approach is needed - and also why it's vital to combine and rotate.

No one wants it to be this complex. But it is. It just is. The only way out is through and that way is not always clear - or open - I know.

I'm also not sure that you had proper liver support before when taking certain Rx. Without liver support, treatment can fail (because the patient often quits).

Now, I also can't "do" much in the way of Rx. That's why I'm always shouting about "LIVER SUPPORT" being so absolutely vital.

And even with an ILADS LL doctors, they are not all equal in all regards. But I sense that you may not have been prepared for this being a long road. No one is, really.

There may be other LLMDs or LL NDs (or similar) who may be better suited to your case. Still, I know they are hard to find and afford.

I get that you don't want to spend your wife's money but ignoring the facts will not save anyone money or pain in the long run.

Besides Bionic 880, what about RIFE machines?

Even if you just treated with ALLLICIN, that could have some benefit (just be sure everyone else eats lots of garlic, eh?).

SOMETHING has to be done, at least one thing that can directly affect lyme. Allicin can do that. Best if part of a protocol but if one can afford just one supplement, allicin is a good one.

Buhner's books offer some choices, too.

You can be understandably frustrated at the roadblocks and bumpy detours - and at the doctors who don't have all this "contained" just yet - or at me (telling you that you can't ignore this) -- still, somehow, I do think there has to be a way.

I'm not suggesting frustration is not appropriate. There are multiple injustices and hardships around every corner when dealing with lyme. Still, we can't just walk away unless we walk TO something that is going to help address the key facts: lyme must be addressed - somehow.

The LL ND thread has many ways to approach this, too, even if one must be on one's own, it's a good place to sort out the best choices.
-

[ 05-17-2013, 03:09 PM: Message edited by: Keebler ]

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Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

Topic: RIFE Machine - Reference LINKS

LL Naturopathic links here, too.
-

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Keebler
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This is the only thing I can afford lately and it really does help. Likely not the end-all, be-all but I've been off of this enough times when I let my order slip to know that does make a huge difference for me.

If only one thing is in the budget, this might be considered - at least to hold down the fort while more is learned or you've had time to sort it out:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=121034;p=0

BERBERINE - LINKS SET
-

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fred0
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Keebler- wasn't frustrated at you at all.

Just with this whole situation and not knowing who or what I can trust and where next to blow my wife's hard earned money....well at least the stakes are pretty high.

Honestly I think I've hindered some of my treamtent because I am scared of getting worse.

I'd rather just try to make the best of it now, at least I can halfway function.

When I get really bad I go psychotic, don't want to come out of my house yet I get despressed from hiding in the house..., and my eyes bug out and hurt extreme.

It is a nightmare.

I was able to still cope with doxy.

He once put me on Claryc.. and I started to freak and have all the freaky symptoms that honestly scare the c+++ out of me.

It's like going back into a nighmare that I never want to revisit again in my life.

I think it's muscle spasm/tension which results in generalized anxiety.

Just horrible.

So I have hindered my treatment to what I can handle and what still allows me to have somewhat of a life, work part time, get outside, work on my dreams etc...

I guess that would be pretty frustrating for a Dr. trying to help me.

I have big dreams to be a professional musician like I was once.

I'm scared to do some kind of treatment that might make things worse, especially if it might turn out being permanent.

I went to a chiropracter 4 years ago for my symptoms and I have never been the same person since.

I don't know what he did but he definitely BROKE me and I haven't been able to recover.

Since then my eye tension has been PERMANENT whereas it used to come in seasons.

Don't ask me why, I don't know and I don't know what this eye phenomena is.

Anyways, thanks for all the links.

Yes, I have become kind of cloudy on the whole lyme subject.

I kind of put the studying aside for some months as all the opposing sides etc...were just starting to bring me down more than encouraging me towards a strategy.

Just too many voices.

And no I haven't read Cure Unknown yet, just excerpt. Mostly just studied articles online.

thanks so much again and also for allowing me just to type away and let some garbage out:)

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lax mom
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If your wife was sick, would you hesitate for 1 second using your hard earned $ to get her well?

I'm sure your wife wants you to be healthy. I know my husband and I went broke treating, but he is now well!

You can't put a price on your health. You are worth it.

--------------------
♥ ♥ ♥ ♥ ♥
(aperture)
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=115161;p=0

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Keebler
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For now, is a Berberine supplement something that you could get and would you be able to give just that a try?

Just ONE thing for now?

I could answer many of your points above but am too tired.

Quickly, though: any sudden twisting or turning of the neck or spine should never be done for anyone with lyme. There are safe approaches for body work, though (such as Upledger).

Eye troubles are classic with lyme.

Psychological issues also very common with lyme & co. and with magnesium deficiency (that goes with lyme). Toxicity from lyme can cause all kinds of mood issues.

Magnesium, Fish oil and Berberine - would be my best advice for right now. These can help ease symptoms so that you can at least see the light through the forest.
-

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Keebler
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http://www.thehumansideoflyme.net/viewarticle.php?aid=65

When to Suspect Lyme - by John D. Bleiweiss, M.D.

Not just when to suspect but also how to UNDERSTAND symptoms.


http://www.thehumansideoflyme.net/

The Human Side of Lyme - Sherr

Excerpts:

. . . Lyme borreliosis is a brain disease as well as a multisystemic disease caused by spirochetal bacteria. . . .

. . . After all the years, neuroborreliosis is still actually considered rare by a majority of physicians, most of whom are spirochetally nave. . . .

. . . Losses of acuity in the human brain's visual cortex have been observed as early as 6 hours following the toxic bite of an infected tick. Lyme may persist after too brief a period of treatment or if there has been no treatment, and may result in chronic infections whereupon

Lyme borreliosis becomes a potential cause of every symptom in medical and psychiatric lexicons. It is the ``Great Imitator'' of this Millennium, spirochetal paresis (neuro-syphilis) having been its precursor and its model. . . .

. . . Chronic or persistent Lyme disease--neuroborreliosis--seldom is identified by the symptoms of its most frequent form--subacute encephalitis--an infected/inflamed brain as well as an infected nervous system. . . .


http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf

Psychiatric Lyme Disease

------------------------------

[Magnesium, B-vitamins, Fish Oil & Liver Support is the best place to start for mood support.]
-

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Keebler
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Why I suggest starting support with magnesium:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=123746;p=0

Topic: MAGNESIUM LINKS sets

Pulling out just a few of the posts from that fuller set:


www.ncbi.nlm.nih.gov/pmc/articles/PMC1725934/

The role of magnesium in the emergency department


http://magnesiumforlife.com/medical-application/magnesium-in-neurological-diseases-and-emotions/

Magnesium in Neurological Diseases and Emotions

. . . Natural Emergency Medicine when used in emergency situations. . . .


http://magnesiumforlife.com/medical-application/magnesium-%E2%80%93-the-ultimate-heart-medicine/

Magnesium - the Ultimate Heart Medicine


http://www.easy-immune-health.com/magnesium-for-migraines.html

Magnesium for Migraines; Magnesium for Headaches -- Could Magnesium Benefit You?
Excerpt:

. . . Could prevent thousands of Emergency Room visits . . . .


http://drhyman.com/blog/2010/05/20/magnesium-the-most-powerful-relaxation-mineral-available/

Magnesium: Meet the Most Powerful Relaxation Mineral Available - by Dr Mark Hyman

A DEFICIENCY IN THIS CRITICAL nutrient makes you twice as likely to die as other people, . . .

------------------------------

Mood issues with lyme are also very often directly due to the hit the adrenal system takes. Adrenal support IS mood support, too.


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/89790

Topic: NATURAL SLEEP & ADRENAL SUPPORT
-

[ 05-17-2013, 05:31 PM: Message edited by: Keebler ]

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fred0
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thanks again everybody:)

Keebler thanks for all the info.

I haven't checked out berberine yet, but I will check it out.

I just happened to start taking Magnesium regularly.

That's at least one positive thing.
For some reason I feel a little freaky when I try to take fish oil.

Is that possible?

on another positive note I think I will soon be going back to my Dr. and maybe give it another try.

Again, I'M scared to make things worse, but slowly being eaten alive is also not funny.

And I WANT absolutely to be able to play again.

Concerning the chiropracter.,,,

I went to him before I knew that my problem was Lyme.

He really whacked me and twisting my neck violently.

I've never been the same since.

Anyways, I'm going to look into some of this stuff and the Berberine. Thnks!

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Keebler
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There is (was?) a famous pianist who had to stop playing for years due to hand, wrist issues. He did other things with music during that time and from that came a reinvention of his career path.

When he was able to come back to the piano, he also did so very differently - with more attention to ergonomics.

Don't give up music just because you should leave the guitar alone for a while. There can still be other ways to be involved, creative and enjoy muscial experiences.

Maybe focus more on voice, writing (with a little piano keyboard to help with the notes for notation, etc.). It could also be the beginning of a project so you can help others with various medical issues that force them to rethink their instruments.

You mention tinnitus. This could also be a time to examine the decible levels of places you and other musicians frequent and do something to make them safe for all ears.

While tinnitus is common with lyme, can be exasperated by certain Rx (especially if liver support is not used), noise & sound decibles levels still have a lot to do with hearing damage that can show up as tinnitus.

And, when on certain Rx, the decibel level at which sound damage can occur is lowered - and for months even after stopping. See the "ototoxic" solutions & ear protectoin detail in the set below.

A rest from such places for your ears may give you the chance to design and work with others who are committed to music at safe sound levels - for everyone.

There are some organizations here that may be of interest to you if you'd like to be involved in some projects. While most are from here in the states, some may be international or certainly have similar groups in your country.

This is essential reading before starting any new Rx, ever, for anything. Liver Protection (which is also ear protection) really matters, first in place before taking the Rx.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links - including HYPERACUSIS
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Keebler
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Books that hold a special place on my bookshelf (the only instrument required is your voice):


The Healing Voice - by Paul Newham

Set Your Voice Free - by Roger Love with Donna Frazier

Sound Medicine - by Laeh Maggie Garfield

Toning: The Creative Power of the Voice - by Laurel Elizabeth Keyes

Now, the emotional componet of making music, (usually the "lift") can be a huge weight at times when one is not feeling well.

If you are used to singing certain kinds of songs (maybe not even used to singing at all) and the music is too tender, find a different genre.

Tears may flow if you get your voice flowing. While that can be therapeutic at times, there have been months on end that I could just not sing due to such sadness and illness. That did not help me at all.

Find something to sing about even if just making sounds, not words. This can help better identify what works for the voice as an instrument, getting back to the basics.

And if singing hurts the voice, just hum. Never sing if it actually hurts. The book above offer examples of how to best treat the voice so that it's not damaged.

LISTENING is also often forgotten. Taking time off from "doing" music need not mean you take time off from listening to it - REALLY listen. That actually takes a great deal of participation.

Find the best musicians of all genres, perhaps. Find nuance. Find true musicianship. In a world with too much flash, you may have to look but it's well worth it.

HOUSE CONCERTS?

Perhaps you and your wife would enjoy hosting small house concerts for various kinds of musicians. Often regional musicians in the area for a moderate sized concert one night, will also do a small house concert on the night before.

Student musicians might also appreciate this opportunity - or just kids (or adults) who like to sing and play music.

Usually, house concerts are for ACOUSTIC instruments. Still, if kept to a certain sound level (or limiting shape and force for drums) there can be room for some electric instruments - just not at "club intensity".

Just Google the term to get started and connect with all the musical groups in your area.

There are organizations all set up to help you with how to do this, from what kind of snacks to serve, how much to charge, how to host the musician(s), and invite or include neighbors and keeping to a certain sound code for their comfort, too.

Local zoning codes may need to be considered but this usually poses no problem as most homes can't really hold too many people, anyway, and these don't go all night long.

Bathrooms do need to be considered, though.

You could also encourage a NEIGHBOR to do this and just be sure you reserve a lounge chair.

Or use a community center to put on smaller, intimate concerts or arrange weekly sessions.

SONG CIRCLES?

You can still attend or host Song Circles, etc, gather with your buddies -- old and new. You could be become the EARS of the group and set yourself aside to just listen and help them become more finely tuned.

You can set this up to be a closed group of friends who have a certain degree of expertise or open it up as much as you'd like to various levels of skill.

And you can always lean back in a recliner and even close your eyes. Always reserve a recliner for yourself.

I hope some of these ideas help.
-

[ 05-17-2013, 06:23 PM: Message edited by: Keebler ]

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Keebler
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Whether to host - or find some to attend:

http://www.concertsinyourhome.com/

House Concerts In Your Home


http://drewpearce.com/portfolio/houseconcerts.html

How to host a concert in your home.


http://www.songcirclemusic.com/newsite/about.php

Song Circle - across the globe, a live performance network


http://www.folkalley.com/

Folk Alley.com - a site you might appreciate
-

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glm1111
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fred,

Check out the PARASITE WARRIOR THREAD. Undiagnosed parasites were the missing link for me.

Treating with herbs and salt/c helped me expel the parasites on www.lymephotos.com Filarial worms have been found in the original ticks that Burgdorfer dissected and Dr. Eva Sapi is finding them in over 40% of the ticks she is dissecting.

Google parasite symptoms. Hope you give this some consideration. The world needs all the great music it can get.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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Robin123
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Couple comments - we're all different when it comes to how we respond to treatments, but for me, drinking mangosteen juice stops all my Lyme eye symptoms. It's an anti-inflammatory drink you can find in healthfood stores and online.

Re chiropractic, there's many different force levels, from the gentlest to the most forceful. I prefer medium force from someone who knows what they're doing.

Treatment occurs in three categories: kill/deter the organisms, detox, and fortify the body. Also anti-inflammatories, which I guess could be considered a form of detox, in lowering the inflammation level? You need to eventually find out what works for you in each category.

What's good about a really good Lyme doctor is they supervise you in all this - they do bloodtests and see where your chemistry needs bolstering, etc.

It's your work - it's our work. And in the end, we hopefully improve and can do more of what we want to do in life.

[ 05-18-2013, 02:34 AM: Message edited by: Robin123 ]

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Judie
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Hey Fred,

There IS hope.

Being a musician (piano player) myself, this whole illness has been quite frustrated.

I also have tendonitis (in my arms, wrists and hip, it's hard to work the pedal).

I started going to a pain management clinic after some physical therapy. The physical therapy helped a little bit too.

I also had a horrible experience with a chiropractor.

I'm now working with an osteopathic doctor from the pain clinic and doing laser light therapy.

Here's the USA link, but the laser was created in Germany. I don't know where you are in Europe, but it may be something to consider:

http://www.k-laserusa.com/

This seems to be helping and I'm playing the piano again. I never thought I'd be able to, so there's definitely a way through this.

Hang in there!

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fred0
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Would like to thank everyone for your help and giving me so many resources.

I have a lot of reading to do now.

I have continued to be active in music although I'm taking a short(hopefully) break

I still post my tunes online, keep in touch with my fellow musicians in town and on social media

and I go to concerts and the music scene that I know of here in the City.

When I continue playing again, which I will one

way or another, I was planning on trying some

house get togethers, concerts

or bringing in my other artist friends and mixing

the art, music, painting,etc.etc.. Good idea to think about doing that now!

The way my arms are feeling I think they are

getting much better already but I want to give it

some extra time.

I am taking some extra enzymes to hopefully help in the healing, rebuilidng.

I also do eccentric stretching excercises which I

would really recommend for anybody suffering from

tendonipathy.

So, all that to say that I've been active in my resting.

Thanks again Keebler for all the info on music.

Very proactive. Every problem can be seen as a challenge to bring something new.

Funny, I do also measure the decibel levels when

I go to different events. I have an app on my phone.

I am a big advocate of taking care of your

hearing which is sadly ignored by most until it's

too late. Since getting Tinitus I only play

acoustic music and have since fell in love with

wood instruments.

I recently playing a famous open floor cafe here

where no one is allowed to plug in instruments.

The music is appreciated without the need of amplification and everybody listens intently to the musicians.

Thanks also for showing me that probably there was

a connection with this Chiropractic and my Lyme.

Anyways, I better get to reading. thanks!!

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Judie
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Is there a lyme support group in your area? You might be able to find resources you weren't aware of in your area.

Mine connected me with a doctor of Chinese Medicine who knows about lyme. My body just couldn't tolerate antibiotics anymore so I needed a different approach.

Some of the meds stirred up some major mood swings, so they can mess with your mind (and you definitely need your mind working to navigate all the info out there).

You also might want to look at this guy's blog (I think he's also a musician).

What to do if You Suspect You Have Lyme Disease:
http://www.tiredoflyme.com/what-to-do-if-you-suspect-you-have-lyme-disease.html#.UZfjaKK-qr0

Even he says, "Remember to not just seek out any LLMD or LLND as not all of them are truly authentic to their claim. There is a lot of money to be made from people who have Chronic Lyme Disease and their desperation only makes it easier."

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fred0
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Hi Judie. No there is no support group that I've heard of.

I was actually surprised how good I tolerated abx, well at least Doxy.

I thought I'd have problems since I'd always had Gut problems.

My Gut did better while taking abx which was strange.

It didn't do anything significant for some of my others systems, maybe just slightly.

I do feel like I got slighly worse after getting off them.

thanks.

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Judie
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Doxycycline is an interesting antibiotic. It can calm the immune system, for example my friend who has autoimmune problems, like rosacea, takes a small dose everyday.

Also, have you been tested for h pylori?

This can effect the stomach and the treatment is antibiotics. Some stomach stuff cleared up for me on antibiotics.

[ 05-21-2013, 08:38 PM: Message edited by: Judie ]

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Catgirl
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Without reading everyone's posts here, have you considered parasites? We all have them, some of us just have more than others. Attacking them gives me MUCH more energy. Salt C is inexpensive and easy for me. Check out the PARASITE WARRIOR'S THREAD.

Also, have you tried any herbs (Byron White, Cowden, Buhner)? They help many people. I was on Byron White for most of last year and his herbs helped me. BB has 12 extra strands of dna to hide and morph into whatever it wants to, so we have to keep switching things up. Rotating herbs has been beneficial too (just like rotating abx).

This disease is so multifaceted, you have to hit it from all angles to help the immune system. Gluten free and sugar free are necessary, IMO (sugar feeds lyme).

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--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

Posts: 5418 | From earth | Registered: Mar 2011  |  IP: Logged | Report this post to a Moderator
   

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