ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

[klutzo]

Koan

Hi Koan,
Things are looking up. One of my husband's clients gave us a name of a woman doctor who does prescribe all of our drugs, at her discretion. The staff was super nice as well and she is close to us. The only problem is that we can't get in to see her until Nov. 25, since she is going on vacation to Africa. Still, I made us appts. and reflecting my concern over running out of drugs if we wait that long, her staff member offered to talk to her and get back to me before she left today, since they are open only half a day. With my usual bad luck, I was in the shower when she called, so I will have to wait until tomorrow to find out what the Dr. said to her about our situation.

In addition, a friend of mine said her new doctor will prescribe anything! He is kind of far for us, but at this point, who cares. She says he gives her pain prescriptons she never even uses. She says he listens and gives you what you need. So, when his office gets back from lunch, I will make appts. for both of us ASAP. If he gives us what we need and we like him, I may or may not cancel the later appt. with the other doctor. It may be worth keeping both appts. and choosing the favorite after that first appt., not to mention getting scripts from both so we have some back up if something like this happens again. I know that is not kosher, but junkies do it all the time, and if I am going to be accused of being one, I may start acting like it. Whatever it takes to keep the system from killing us.

I am trying to calm down, since I have an MRI early tomorow morning, and I get nervous about them. I am not claustrophobic, but like many Fibro peope, I have low aldosterone and so I have to pee really often and as a Lymie I get cold easily and hospitals are cold and when I get cold I have to pee more, and 45 mins. in an MRI machine is a long time for me to hold it. How's that for a run-on sentence!

Thanks for having such faith in me. I don't think I'm strong anymore. My adrenals are shot. I had to do what I'm doing today. There was simply nobody else to do it....story of my life.

klutzo

 

[Dreambirdie]

If we have an opportunity to influence what kind of show they do, then that's my focus here. That's why I sent Dr. Oz info on Donnica Moore's and Nancy Klimas's work, and gave the WPI folks the heads up about last weeks Oz show. The XMRV is going to be back in the news, you can bet on that, and I would prefer to have the "right" people (my opinion) reach Oz before the others get to him.

That's my story and I'm stickin to it.

 

[leelaplay]

Letters that are angry and even abusive, likely leave them feeling the topic is still too controversial to cover. So venting may feel good sometimes, but if done without being reasonably considerate, it may simply once again push CFS/FMS OFF their radar screen.

Letters thanking them for covering the topic, but noting how and why it needs to be improved, and why it is important to cover, will more likely get what you want. It is OK to thank them for covering CFS, and still note that...

islandfinn here - the author of the angry aggressive draft letter to Dr Oz that I posted here. I too agree with this and it has been my way of moving in the world - nickname used to be "the diplomat". I just get so dang MAD sometimes. Was new to forums and posted with good intentions - but without knowing how forums really work.

Just wanted to reassure you all that I didn't send it in that form. Slept on it, then got rid of the venting and attacking.

I don't want to see any more public debates about child abuse or stress or depression or abnormal illness beliefs. I don't want to see anything that will cause divisions in the patient community and inspire us to turn on each other.

I want to wait until the science is unassailable.

Then, we can talk.

I too agree with Koan. THe ME/CFS world is in flux right now and there is too much misinformation out there, too little "proved" yet. I'm for waiting til the sludge settles, or as Ross so elegantly put it, "allowing the development of further evidence of the pathophysiology of ME/CFS before encouraging further media coverage in this type genre"

island finn

 

[MEKoan]

I agree, Ross, this has been my position for years as people insisted that coverage on Oprah would be a good thing.

Dream, I guess I think that however we might suggest they shape their product, the only thing they will really hear from us is the clamour to cover it.

I think they may pay attention to the fact that there is a potential audience but doubt they would take our recommendations re who to book.

And, yeah, the XMRV story will evolve and WPI will send out more of their great press releases and, I think, we should take our lead from them now regarding media coverage.

Again, just one little opinion.

 

[MEKoan]

Finn,

I don't think they intuited your angry letter

I think it's great to write passionate letters, show them to someone who will get it, sleep on it and then decide - just what you did! Perfect!

We're not always perfect. Well, I'm not!

 

[MEKoan]

I'm for waiting til the sludge settles, or as Ross so elegantly put it, "allowing the development of further evidence of the pathophysiology of ME/CFS before encouraging further media coverage in this type genre"

laughing!

k

 

[Dreambirdie]

I'm for waiting til the sludge settles, or as Ross so elegantly put it, "allowing the development of further evidence of the pathophysiology of ME/CFS before encouraging further media coverage in this type genre"

Re: the SLUDGE

My gut level feeling is that this going to be more sooner than later.
I'm going to keep my eye on it and will report back.

Over and out.

 

[MEKoan]

Me, too! Will be watching for reports

 

[Hysterical Woman]

Klutzo

Hi Koan,
Things are looking up. One of my husband's clients gave us a name of a woman doctor who does prescribe all of our drugs, at her discretion. The staff was super nice as well and she is close to us. The only problem is that we can't get in to see her until Nov. 25, since she is going on vacation to Africa. Still, I made us appts. and reflecting my concern over running out of drugs if we wait that long, her staff member offered to talk to her and get back to me before she left today, since they are open only half a day. With my usual bad luck, I was in the shower when she called, so I will have to wait until tomorrow to find out what the Dr. said to her about our situation.

Hi Klutzo,

Thanks for letting us know about the good news. I was anxious to check to see how you are, but have been away from this thread trying to watch as much of the CFSAC meetings as possible.

Please keep us updated on how you are doing - sorry to hear that you have to wait till Nov. 25 for this particular doc. Also, please gives us updates on MRI.

Take care,

Maxine

 

[klutzo]

Update

Hi Maxine,
Things are not so good. Iam going through my email to take my mind off how I feel.

It turned out that woman doctor won't pescribe our drugs for chronic patients at all, only for short-term ones. We have only one option left, a doctor 45 mins. away on very heavily trafficked 6 lane roads, a made to order overstimulation panic attack for me. We are supposed to see him Tues. morning.

We decided if this last chance doctor refuses us our drugs, my husband will have to keep going to the doctor who fired me, no matter how much that humiliates me. I will have to find a new primary close to home and also go to a shrink to get my xanax, so I can walk. I can use panic as my reason.

We'd had the same primary doctor for five years and had no idea how drug prescribing had changed in the world during that time, since she readily gave us our drugs and even doubled doses if we asked for a small increase!

However, we may have to reschedule with the new doctor, leaving us hanging even longer......

I woke up this morning with all of the symptoms of acute pancreatitis, which means I will not be eating anything again today. I don't want to go to the ER, since I was just in there nineteen days ago for the same thing and they kept me all day and did nothing but another CT scan, which was normal. I would have to pay for an ambulance too, since my husband is with friends an hour away today, and I refuse to disturb his only fun. The symptoms are much worse this time, but my temp. is only 98.5, which they would consider normal. For a Lyme patient, that is a fever, but they will never believe me, a mere patient. A typical Lyme temp is 96.5 or even lower.

I had an MRCP of my pancreas done on Thursday to look for stones stuck in ducts and/or cancer, and they said my GI doctor would have the results yesterday, but he has two offices in two cities and it often takes two weeks before he gets down far enough in his backloged pile of results to read them.

I have not been on this forum lately because I've been so ill and spending all my time looking for a new primary doctor at the same time. If you don't hear anything, it probably means I'm in the hospital. Since I have only one antibiotic I'm not allergic to, the outcome could be iffy. I am okay with it. I am tired of suffering. A prayer for me would be appreciated, if you feel so led.

Thanks so much for asking and have a Happy Halloween,
klutzo

 

[Hysterical Woman]

Klutzo

Hi Klultzo,

I was glad to see you posting again so that we at least know your status even if it is a fragile one. I am sure that there are many of us out here who are concerned about you - some don't post because of their own sad state of health.

I will definitely say prayers, send healing light, think positive thoughts or whatever else I can do for you and others on this forum who have to go thru so much.

I have decided this Halloween that I will "go as" a CFIDS patient - that's the scariest thing I can think of!

Take care,

Maxine

 

[leelaplay]

Hi Maxine,
Things are not so good. Iam going through my email to take my mind off how I feel.

It turned out that woman doctor won't pescribe our drugs for chronic patients at all, only for short-term ones. We have only one option left, a doctor 45 mins. away on very heavily trafficked 6 lane roads, a made to order overstimulation panic attack for me. .................

A prayer for me would be appreciated, if you feel so led.

Thanks so much for asking and have a Happy Halloween,
klutzo

hi klutzo - be assured many prayers are being said for you.

Have you checked with hrsa? I don't know if they'd be any good at all, but they were at the CFSAC meeting and spoke for some time about the services they offer - including medical care for those who can't get it. Just the fact that they were at the meeting might indicate that they foresee playing a role in CFS care, and maybe are more sensitised to our needs right now. maybe maybe maybe.......their website is www.hrsa.gov

Don't know if this helps, but I always find it easier to get through rough times when I have a sense that they are going to end. Think xmrv is doing that for me. Know there might be more rough times short-term, but do think treatment for us is in the foreseeable future. Hope that thought comforts you somewhat and helps you hang in there!

happy hallowe'en

 

[Hysterical Woman]

Good idea Island...

Sounds like a good idea, Island - Klutzo maybe HRSA could possibly help? I saw the woman at the CFSAC meetings talking about the web site and I visited there too. I discovered there are actually some low cost clinics near me that I didn't even know existed. Hmmmmm....wonder if I could find an infectious disease doc there?

 

[zoe.a.m.]

Hi Maxine,
Things are not so good. Iam going through my email to take my mind off how I feel.

It turned out that woman doctor won't pescribe our drugs for chronic patients at all, only for short-term ones. We have only one option left, a doctor 45 mins. away on very heavily trafficked 6 lane roads, a made to order overstimulation panic attack for me. We are supposed to see him Tues. morning.

We decided if this last chance doctor refuses us our drugs, my husband will have to keep going to the doctor who fired me, no matter how much that humiliates me. I will have to find a new primary close to home and also go to a shrink to get my xanax, so I can walk. I can use panic as my reason.

We'd had the same primary doctor for five years and had no idea how drug prescribing had changed in the world during that time, since she readily gave us our drugs and even doubled doses if we asked for a small increase!

However, we may have to reschedule with the new doctor, leaving us hanging even longer......

I woke up this morning with all of the symptoms of acute pancreatitis, which means I will not be eating anything again today. I don't want to go to the ER, since I was just in there nineteen days ago for the same thing and they kept me all day and did nothing but another CT scan, which was normal. I would have to pay for an ambulance too, since my husband is with friends an hour away today, and I refuse to disturb his only fun. The symptoms are much worse this time, but my temp. is only 98.5, which they would consider normal. For a Lyme patient, that is a fever, but they will never believe me, a mere patient. A typical Lyme temp is 96.5 or even lower.

I had an MRCP of my pancreas done on Thursday to look for stones stuck in ducts and/or cancer, and they said my GI doctor would have the results yesterday, but he has two offices in two cities and it often takes two weeks before he gets down far enough in his backloged pile of results to read them.

I have not been on this forum lately because I've been so ill and spending all my time looking for a new primary doctor at the same time. If you don't hear anything, it probably means I'm in the hospital. Since I have only one antibiotic I'm not allergic to, the outcome could be iffy. I am okay with it. I am tired of suffering. A prayer for me would be appreciated, if you feel so led.

Thanks so much for asking and have a Happy Halloween,
klutzo

Hi Klutzo,
I was wondering about the info you have on Lyme and fevers. I tested negative for Lyme, but I have had recurrent (and lengthy........) fevers for over 8 years. Did you learn this info from a Lyme doc and how did get tested for Lyme? I am hoping to be accepted by an infectious disease doc near where I live.

Yeah, the rules and obligations surrounding prescribing controlled substances are no joke! I've heard of many many doctors sending letters out to patients asking them to find other care because they can no longer take the risk of prescribing. Basically, I guess the FDA is trying to force everyone into pain clinics, but I think we all know what a precarious and ridiculous situation it's forced patients into. What's so unbelievable about it is how quickly the new rules have gone into place; more quickly than people can find doctors willing to treat them.

Good luck with your search!!

ETA: HRSA. My ears perked up when I heard the HRSA rep speaking and I was impressed with how their program sounded. It did seem though that they are very limited in terms of what they can treat and like it might potentially be a place for CFS patients. I could tell the rest of the panel was sure hoping so!

 

[Hysterical Woman]

Hrsa

Hi Everyone,

Do you guys think it is worthwhile to try to start a thread asking if anyone in the forum has gotten help thru HRSA - whether it is a low cost clinic or something else? Where would that thread belong? Anyone?

Thanks,

Maxine

 

[Dreambirdie]

WPI and Teitelbaum

LATEST NEWS FROM WPI FOLKS

I spoke with the WPI media coordinator (Frankie Vigil) on Saturday. She said she had STILL NOT gotten any word back from the DR OZ SHOW producers, regarding the possibility of an updated show about CFS (including XMRV). BUT... she had been in contact with Dr Teitelbaum, and was "working on something" with him. She didn't say specifically what, but told me she would let me know if anything important arises from this.

 

[leelaplay]

thanks for the update!

if

 

[Cloud]

Something wrong with the email notifications for this thread and maybe the entire site. Even though I am subscribed to this thread, Finn's post just now was my first notification in over a week. Any ideas?

LOL elogence, yea right Finn....I don't know if it's that or what one of my biology professors used to say.....XSBS

I agree strongly with using prudence (wise caution) pushing for more media.

I think I re-read all posts, but please let me know if I didn't address a question or something.

hugss

 

[Dreambirdie]

Hi Ross--

Just an FYI, I'm not pushing for more media, just keeping an eye on the media that is already in the works.

And of course, reporting back on what I know. Over and out.

 

[Cloud]

I gotcha on that point dreambirdie.....I was just trying to cut corners with my statement, lol. It sounds like we may get another show at some point, so I appreciate hearing your reports.....hugsss,