-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i know. but so many famous ppl with it reject lyme
i love her too...desperado....
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
If anyone figures out how to contact her directly, let us know here -
Ok, just found a listed number for AARP, who has published about her condition - 1-888-687-2277, 7am - 11pm M-F EST.
Desperado, why, you could lose all your senses, 'cause ticks ridin' fences for so long now... Oh it's a hard one 'cause they're out in all seasons, this nature that's pleased you can hurt you now...
[ 08-24-2013, 12:22 AM: Message edited by: Robin123 ]
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- This makes me so incredibly sad. I knew many years ago that she had health issues that seemed complex.
I hope someone can help her regarding that "tick bite" education and access to a good LLMD for proper assessment / treatment. It does not have to go the way she may think. Her voice, her health could rebound and I'm sure pulling for her.
Hope she will be contacted and can move to action.
I've never heard a voice as strong, vibrant and as beautiful as hers. I think it's possible to see some healing and sure hope she finds the help around the possibility of that. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- shoulder surgery = steroids? If so, important clue as that could make lyme & co. so much worse
"residual effects" of tick a bite indicate that she had definite symptoms - and for so many years, she will need a true LLMD.
Excerpt:
" . . . She says she initially attributed her problems to the residual effects of a tick bite and shoulder surgery.
"I think I've had it for seven or eight years already, because of the symptoms that I've had," . . . . (end quote)
The lyrics from other singer /song writers echo from Where Have All The Flowers Gone? "When will we ever learn? When will we ever learn?"
Dr. Marz' experience could be a good example of how this could turn around for her, too. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
There are so many people out there being misdiagnosed and told they have an incurable, often fatal, disease when it is actually lyme and co's.
Protomyxzoa causes parkinson's too. She should be tested to know what is causing it and get the right medication. Low Dose Naltrexone helps too.
Really sad. I went to one of her concerts too - many years ago.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Here is a facebook page. If enough people post, maybe someone will take notice and tell her.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Catgirl
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posted
Wow, I didn't know protomyxzoa causes parkinsons too (though I'm not surprised, I guess). How does LDN help? Nefferdun, do you think the diet alone will help slow it down?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The tick bite that caused her trouble could have carrying any number of stealth infections.
Yes, LDN could help but only if the tick-borne / stealth infection(s) are also directly & fully addressed. That step is vital, along with support measures. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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map1131
Frequent Contributor (5K+ posts)
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posted
Randy Travis couldn't sing either. His blessing was finding someone with half a brain. Linda has not been so lucky.
I hope the messages are seen and acted upon.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Catgirl,
you asked how LDN works. It balances the immune system. Neither supresses nor boosts, but balances, supports. [Certain medical mushrooms also offer this kind of support.]
Again, though, treating any stealth infection along with it is of vital importance. It cannot work magic against these kinds of infections on its own but, (from various LLMDs accounts) for about half to 3/4 of some with lyme who have tried this, they find some improvements:
'Kete-tracker
Frequent Contributor (1K+ posts)
Member # 17189
posted
I recall that doctor in U.O.S. who explained to the young lady (the big fan of 'U2'?) about how untreasted Lyme can "trigger" things like Parkinson's, especially in older women.
MY question is whether treating this as late-stage Lyme would improve Linda's condition?... or not?
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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Rivendell
Frequent Contributor (1K+ posts)
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posted
Michael J. Fox couldn't be convinced.
Hopefully, she will listen.
Posts: 1358 | From Midwest | Registered: Apr 2009
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posted
I'm all for trying to help someone get correctly diagnosed, but feel I have to be careful. Often, it is seen as me trying to talk someone into having "my disease". I hate that term so don't use it in reality.
Linda already knows about ticks....but we don't know what she's done about it. That's the million dollar question.
To assume it's lyme & co's is a big leap. Parkinson's is its own disease, with yes, similar symptoms as lyme.
But just think if someone you didn't know told you that you don't have lyme....that it's Parkinsons? PO'd I'll bet.
So I think we need more info on her treatment early on (was it for lyme or just symptoms blamed on lyme in her own head?).
Just playing the devil's advocate here....I've seen folks come on her saying they thought they had lyme and it turned out to be something else, and people jumped to say they were incorrect and should find an LLMD stat! Very presumptious on our part I think.
Just me thinking out loud. Heck, I'd be thrilled if a doc told me I had xyz..obia and can treat it rather than having lyme.
I just think we should know more info b/f challenging a "what's your real disease" assumption. And yes, I know it goes the other way too, that people are falsely given a disease diagnosis and it turns out to be lyme.
Just sayin......
Posts: 867 | From PA | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As I see it, the main point would be to encourage her to seek counsel of an ILADS educated LLMD for assessment.
We can't say for sure the cause of the PD is lyme, in her case but the connection of her having lyme raises a red flag and, most often, patients are in the dark about the fact that lyme can cause PD (or contribute in large part) - and just who to see about learning more, that the medical community is not informed.
And that there have been many misdiagnosed with Parkinson's, ALS, MS, who have gotten better (even well, totally reversed in some cases) once proper diagnosis of various tick-borne or stealth infections has been made and proper treatment has been obtained.
Lyme seldom travels alone and the other infections involved are very complex. A LLMD will know about those, too.
This is a possibility that every person with any neurological diagnosis should know. And, again, that an ILADS educated LLMD is most likely the best chance for a doctor who will actually do the right kind of assessment & (if such infections are involved) offer the right kinds of treatments.
It's vital to let everyone know that they will not get adequate assessment / treatment though our regular medical system (even specialists in university centers) for tick-borne infections.
They simply do not have the knowledge, skill or willingness to learn - regarding either diagnosis that must go beyond inferior testing - or combined treatment options that are good enough for long enough.
posted
I asked my Lyme doctor about Parkinson's and he said there are many causes of Parkinson's and one is Lyme.
I know from personal experience now that that is the case. Someone I know who presented with Parkinson's got tested for Lyme and is Lyme-positive and is in treatment now!
With Linda R's background of having had Lyme, I'd say it's a slamdunk that there is some involvement with Lyme, and who knows what else.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
My father had Parkinson's and I am sure it was from Lyme. He also had exposure to chemicals .. double whammy for Parkinson's.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
I know someone (with Lyme) who lives in the same town as the Rondstadt's, and has a connection with them. I just spoke to her, and she is going to contact the family...
Posts: 1880 | From Earth | Registered: Jul 2013
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Phoiph
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posted
I will report back...
Posts: 1880 | From Earth | Registered: Jul 2013
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Keebler
Honored Contributor (25K+ posts)
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posted
- I hope she remembers her fabulous song "Different Drum" -- her choices here may require following the beat of a "different drum" so to speak. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Catgirl
Frequent Contributor (5K+ posts)
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posted
Thanks Keebler (LDN)! :)
I really hope Linda gets a clue.
My practitioner has noticed a connection to parasites with parkinsons patients.
I wonder how Yolanda (real housewives of beverly hills) is doing with her lyme.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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droid1226
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posted
Once the damage is done, she's probably not going to care about what caused it. Or even that it's reversible. Probably just wants to live a more normal life.
Ben Petrick, former MLB player who was in Under Our Skin. He now has severe parkinsons at 36 and had brain surgery(where he was given 50/50 chance to make it through) to fix the symptoms of parkinsons. It helped, not a lot. Not as much as antibiotics had helped him.
He just wanted a normal life, didn't care about the cause. He succumbed to mainstream medicine. I sent him prob 20 emails he finally got back with a quick email saying that he knew it may have been triggered by lyme but was beyond the point he felt antibiotics could help.
I still don't get it, but I kinda do. Lyme causes damage and you want support and hope. His situation is degerating but I think there's a point antibiotics can't bring you back. Or you just can't afford it or you'd rather have a shorter time feeling good than hope of a long healthy life.
Ronstandt will listen to Drs, not us. Keebler nailed it. Lyme, then surgery, then steroids exploded the spiro's most likely.
Hyperbaric is effective for BOTH Lyme and Parkinsons...it doesn't matter if she believes its caused by Lyme or not...
Posts: 1880 | From Earth | Registered: Jul 2013
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Keebler
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posted
- [For someone who might or does have lyme] Hyperbaric is best when guided by a LLMD or LL ND, for various reasons.
Indeed, there can be various ways to approach and treat. I just hope she finds her way to an ILADS educated LLMD or LL ND soon to consider all possible variables of diagnoses - and all possible modes / combinations of action.
It's that ILADS connection to education that is of such importance. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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droid1226
Frequent Contributor (1K+ posts)
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posted
I def don't think antibiotics are the only way out of this.
They've made me functional.
I was just saying that they brought Ben out of his wheelchair and stopped his shaking. Then he quit them on the advice of his PCP. Sad.
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
That is a shame about Ben. The poor guy listened to his PCP though instead of an LLMD (big mistake).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
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posted
Keebler...
I totally agree with you, that, in a perfect world, hyperbaric treatment for someone with Lyme disease would be best guided by a LLMD or LLND who also has expertise in hyperbaric.
The problem is finding someone with that combination of experience. Many LLMD's, LLND's, and MD's are aware of hyperbaric, but are not necessarily experienced enough with it to oversee/guide proper treatment, give accurate advice, or, in many cases, even suggest it.
In my case, I was told by (several) LLMD's that I was an antibiotic failure, and there was nothing more that could be done for me. Hyperbaric, which is ultimately what made me well, was never mentioned as an option.
Unfortunately, where hyperbaric is concerned, it may be necessary to look beyond an LLMD in some cases...
Posts: 1880 | From Earth | Registered: Jul 2013
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