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» LymeNet Flash » Questions and Discussion » General Support » RHOBH only needs 90 days of IV..... hmmmm

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Author Topic: RHOBH only needs 90 days of IV..... hmmmm
fourwinds
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I've been a voyeur re her posts and twitter... not sure who her doctor is but this is what she said:

" Thank you for all your well wishes and sharing your inspiring stories with me.
I'am on day 70 of my IV treatments and can see the 90 day finish line."

Really??? Will be interesting...... I wish her well.

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Keebler
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So who is RHOBH?

Indeed, whoever that is, it is of concern that she - and now the entire Twitterverse will think it's a 90 day deal.
-

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fourwinds
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Sorry Keebler [Smile]

It's Yolanda Foster on the "Real Housewives of Beverly Hills"

She's been posting/twittering pic's of herself getting IV's (with an ocean view, in her private jet) as encouragement to others... uh, yeah right.
I do not make these comments to be mean, but rather in the REAL world of Lyme....


I'm sure she is sick, but not sure she can really comprehend what the majority endure financially, and otherwise....

I think some in the Lyme World believe(d) she may be a voice for them.. (she keeps referring to Lyme as "Lymes" arrghhhh!!! )

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surprise
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Well, I wish her the very best, regardless of her financial status.

And who knows, maybe she means 90 days of IV only, followed by herbs and/or orals. We don't really know.

--------------------
Lyme positive PCR blood, and
positive Bartonella henselae Igenex, 2011.
low positive Fry biofilm test, 2012.
Update 7/16- After extensive treatments,
doing okay!

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fourwinds
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surprise... I, too, wish her well and you may be correct...

we all have our own "realities" with, and of, this illness but some's experiences are harsher than what others' have to endure.....

That's just life....

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Lymetoo
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Let's hope she will continue treatment until she is well.

Lymes?? Makes you wonder who she is seeing.

--------------------
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Limeaid
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I think she is receiving the IV antibiotics four

times a day. That could be why it is 90 days.

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birdie67
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I did read that she will follow IV with orals.
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Life+Lyme
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Has anyone seen that she's in FL pursuing treatment right now? I have reason to believe she is going to a well-known 'detox' center. I don't know if I'm allowed to say who the dr is.

I wonder if she is starting to realize she'll need treatment for longer. Wishing her all the best!

--------------------
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3greatkids
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Fourwinds....I totally understand where you stand with your statement.

Isn't it sad,in one of the smartest,most medically advanced countries in the world,many must endure this nightmare of a disease.
We fight tooth and nail to get treatment,we suffer financially,socially,so yes, when I hear of ocean views and private jets...it makes my skin crawl.Sort of a slap in the face to the ones that have hour long cars trip and end up puking our guts out getting back and forth.

She will never really "get-it", unless she is penniless and has no other options, but to endure the ravages of this monster.

She is NOT my face to this Lymes(ha)!So much for our incredible USA health system!! YEAH!!!

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fourwinds
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Here's her latest post... I'm sorry but she needs to come and read here for bit, maybe all of our

experiences/ treatments could be enlightening...

Again,I wish her well, but she intimates she is "leading the way" for us...

Hmm.. WE are the experienced soldiers who've been thought the battles. I would say we are paving the way...!


"Good morning everyone........

Just a little note to say Hi and give you a update on #myhealthjourney

I have been at a wellness center in Florida for the past week trying a holistic approach to my Lyme disease.

After 85 days of IV antibiotics i felt that my progress was going way to slow. Yes my brain has cleared up a little bit but the damage the

antibiotics were doing to my stomach and not to mention how physically ill they made me.

I felt in my gut that i needed to make a change, Its scary because i am walking this dark road of the unknown. There are so many different

protocols and so much controversy on how to cure Lyme disease , its insane.

Anyway i have always been a leader, i am on a mission and i wont stop until i find my way! To

all my fellow Lyme Warriors out there please hang tough! I will share as soon as i find something worth while.

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Keebler
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I am not just saying this about her - this is exactly how I thought way back. I had no idea of what would be ahead. In retrospect, I might have told me self back then:


She says: " . . . Anyway i have always been a leader . . . "

well, that's the scariest part. By just rejecting one path she seems to have taken another that is not one with LL doctors.

Rather than trying to forge a whole new path herself - just tossing her hands up and walking away, now joining up with those not LL, there is the risk of missing the boat.

I do hope she find LL doctors soon.

I'm not sure public tweeting is a good thing here as she is still finding her way. She has a ways to go before becoming a "leader" if she walks away from the science of lyme.

Still, aching, she shows the problems that those with lyme face - very real problems. She has courage going public about it, I just worry she does not have a LL expert to guide her and that others will just walk away, too.

We have to know the science of how this works. AND about all the ways to support, too.

As for the side effects of the Rx, I hope whoever had been treating her informed her of the protective measures to take -- and of other ways to approach it.

Support is all well and good but not unless it also addresses lyme directly, along with support.

To think that after 85 days all should be well is common but can be a huge mistake and misunderstanding about how borrelia works.

To turn one's back on direct treatment after 85 days is a very slipperly slope. That's just under 3 month. One LL author researcher worked out that a minimum of 30 weeks is needed to cover the life cycles of the borrelia -- and that would be along with addressing the cyst and other forms, too.

I know she (everyone) with the stomach trouble must consider that, too. But there are things that can help. AND I'd sure be considering RIFE.

I wish this were all easier. I can see why people want to quit and I sure hope she can find a way to treat that both supports her while also directly addressing lyme (or other TBD).

I fear many "detox" paths miss the boat regarding Borrelia neurotoxins. Have to stop the source WHILE cleaning up the mess. Just trying to clean up won't work. And it's also way more complex than even this:

http://www.townsendletter.com/FebMar2006/lyme0206.htm

THE BIOCHEMISTRY OF LYME
-

[ 02-27-2013, 03:25 PM: Message edited by: Keebler ]

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Keebler
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Somehow, hope she see this if she is rejecting Rx treatment. There are various paths, it's just so vital to have a LL doctor who knows the science of it all.


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.
-

[ 02-27-2013, 02:19 PM: Message edited by: Keebler ]

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droid1226
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The Dr. she is seeing will probably help to a degree, temporarily.

He's helped NFL players with CTE, ALS patients, MS patients, lyme patients. But it's not a cure or even a path to remission.

People swear by him. He's also extremely expensive.

It's a proprietary IV infusion that seems to work for all chronically ill people.

She may believe that she is fixing it when she's only treating symptoms and detoxing.

--------------------
http://www.youtube.com/user/droid1226/videos?view=0&flow=grid

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Lymetoo
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So after 85 days of treatment, progress was too slow.

Hello???

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

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undiagnosed22
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I think it is great that she is trying to put the word out about lyme.
The fact that she has ocean biews and private jets does not mean that she doesnt get what it feels like to be sick. Yes, Im sure her life is easier bc she has so much money, but allt eh money in the world cant make you feel better when you are sick.
I do not post here very often and I have never even seen the show, so have no opinion of the housewife, but I feel like those comments were pretty unfair. It kind of seems like it is lose-lose situation for her- say nothing and then would complain that she isnt speaking up, speak up but have money and get talked about for that...

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lax mom
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I don't get my treatment advice from a tweet. I follow #ILADS, not #RHOBH. [Wink]

--------------------
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fourwinds
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quote:
Originally posted by undiagnosed22:
It kind of seems like it is lose-lose situation for her- say nothing and then would complain that she isnt speaking up, speak up but have money and get talked about for that...

It's not the fact she has money, -- My personal concern is her lack of education/knowledge about this disease

Yes, I laude her for being honest.... the fact she is a public figure does place a "burden" of

responsibility on her...and she can easily be misleading people...

If I had money I'd be donating to Dr. Jones, Ihanna house, reaching out or donating to those

who can't afford treatment. I wouldn't be claiming to be "paving the way".

Some of this may also be for publicity...IMO,

I don't dislike her or resent her for having money, I just believe she needs to spend some time researching and understanding the REALITY OF LYME.

How about we start a show called the Real Lyme Patients of ...... [Smile]

Hmmm....think anyone would watch????

Enough said (by me anyway [Wink] ...

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Keebler
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The thing about a public figure speaking out before they are fully educated is that they might not have decided to go public had they known just how complex and involved this might / could / likely be.

They think it's going to be [as they have played it out in their mind] but then, as they get further along, they can be totally gobsmacked.

IMO, anyone who is a public figure - even a private person - should not tell others until they are well enough educated about the matter so as to make a fully conscious decision about the matter.

Or - at least with more information and guidance from LLMDs, LL NDs or the like - they will have perspective and know how to frame the details they share with the public.

As it is, often it just becomes a mess without due thought before speaking out. One the media has any statment, any quote, it's out there forever and ever and open to all kinds of misinterpretation.

Others also may see a celebrity as someone educated in lyme when they are far, far from it. Then, if others follow paths of those not yet fully educated, they may suffer.

Once someone has more detail, and they have some time under their belt, they are better able to say what they want, in the manner they wish.

Tweets can be very unsettling. This instant message to the world craze is just too fast to acquire education and perspective.
-

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lax mom
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The statement that made me recoil was:

"all my fellow Lyme Warriors out there please hang tough! I will share as soon as i find something worth while"

--------------------
♥ ♥ ♥ ♥ ♥
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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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It would be better to share links for ILADS site and others such as LDA and LymeDisease.org that are truly lyme literate researchers, educators and advocates --- and just leave it at that, a note about lyme awareness with professional sites.

The term "warrior" can be so misinterpreted. I hate to see its use for those with lyme. It's just not going to be perceived with much integrity and can backfire.

The use here will seem nearly cult-like by those unfamiliar with the fight those with lyme face. Choosing public words very carefully is so important when one's tweets are picked up by every media outlet in the reality-sphere.

Still, I really feel for her and how hard and confusing this can all be.
-

[ 03-01-2013, 07:45 PM: Message edited by: Keebler ]

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unsure445
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She must be at the Hippocrates Institute in Florida.

--------------------
unsure445

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lax mom
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Wow. I looked up that Institute, unsure445. You can heal your diseases and get your hair/nails done at the same place.

I don't know if they could cure Lyme, but they certainly could reduce my stress levels.

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birdie67
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I read she is at the Florida detox and wellness center.
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Life+Lyme
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Birdie is right about where she is. She also went back today....I guess for more treatment.

It's just not a quick fix, and I think the sooner she figures it out, the better for her.

--------------------
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Full-time medical anomaly.

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healthywealthywise
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I applaud her for being open and trust me, she has said she is "scared to death" and continues her research on this dreaded disease, so I think she knows more than we give her credit for.

As to her wealth, we all know money doesn't buy a cure. I've proven that by spending all of mine, lost my job b/c of it and still 20 years passed by and well, you know.....

I send her hope and pray that her new husband of ONE YEAR, who is in show biz, had the depth of love for her to stand with her during her battle. She seems deserving of it and I hope he stands strong for her.

I got lucky with mine....though on my toughest days, even he gets weary. I fear how a privileged celebrity (he's been married several times prior) will be willing or able to handle her battle.

She's a gorgeous, seemingly caring, sophisticated and learned person. And so down to earth. I couldn't help but like her even b/f she came on the show!

TBD's don't discriminate re: age/income/lifestyle/gender etc.. She's one of us and I fully accept her in our community.

For any of us to nitpick about her level of knowledge, resources, opinions, tweets, etc seems shallow to me. SHE'S TALKING ABOUT IT, LEARNING EVERY DAY AND FIGHTING THE FIGHT JUST LIKE US. AND WE'VE BEGGED CELEBRITIES TO DO THIS ON OUR BEHALF! It might help all of us in the long run, you never know, right?

She seems like if something works, she'll share it. At least I hope so.

So let's send her our love and positive vibes as even she knows she needs it. THIS is what our journeys have proven...on our darkest days, even one person sending hope and support helps.

I have a strong feeling she's being inundated with info from people like us and likely, many LLMD's will rush to offer her their expertise.

Keep up the good fight Yolanda...and please remember us all in your prayers and good intentions! And if you get angry at a lack of progress, USE YOUR RESOURCES TO SHOUT IT OUT TO THE MEDICAL WORLD THAT MORE HAS TO BE DONE TO SAVE EVERY ONE OF US.

(Oh and ps.. I don't know her personally! LOL)

JMHO

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Keebler
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Quote: "For any of us to nitpick about her level of knowledge, resources, opinions, tweets, etc seems shallow to me." (end quote)

I don't see anyone "nitpicking" at her. This is not a personal criticism but a caution about content and dispersion of potentially misleading words.

But, first - and in all kindness and care - it seems all our concerns about this express fear for her if she is not getting lyme literate care. there are many ways to approach treatment but if not by a truly lyme literate experts, this can become worse in the long run.

So, it seems, that some of us are thinking out loud about that.

For a PERSONAL conversation, all this would be fine, sharing fear and frustration and not knowing which way to go. But, going public - on the world wide tweet-iverse (a media method that takes on a life of its own and spreads) some of the things she posts can hurt others when the knowledge base is not there yet.

That's all. It's understandable that those who share their lives minute by minute with the world are, in fact, figuring it out as they go.

But, for those who will use what she posts as solid truth, they can be harmed without full detail such as that provided at ILADS' site, etc.

Not nitpicking at all, in all understanding, just concerned about the ramifiacations on her "followers" who may have undiagnosed lyme, or lyme in the future who will see her as some kind authority and then don't go on to learn the facts because she's stopped short. It's a legitimate concern.

I've been where she is, thinking that treatment would be just too long or too harsh and if I just attended to my body it would magically all be okay. It was not.

I did not have the resources, anyway, but I lived in bubble for years, not understanding the very science of lyme. And that hurt me. I never want others to be so in the dark.

And, I am sure all of us wish her the best possible journey. It's very hard to hear that anyone has lyme and can't get the care they need by true experts in all the modalities.
-

[ 03-11-2013, 03:48 PM: Message edited by: Keebler ]

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