ABC's Good Morning America

[Maz]

Hi All,

For anyone interested in the Lyme controvery, ABC's Good Morning America will be interviewing a Lyme Literate Physician and also someone from the Infectious Disease Society of America to show both sides of this controversy. The segment is supposed to air between 7.30am and 8am on Thursday, July 3rd.

Also, for anyone wanting to listen in to tomorrow's interview with Pam Weintraub, author of “Cure Unknown – Behind The Lyme Epidemic” she will now be interviewed tomorrow (Wed July 2nd) at the revised time of 8 to 9am Central Time. Details as follows, with thanks to CTLyme at yahoogroups:

Conversations with Joy Cardin, Wisconsin Public Radio
http://www.wpr.org/cardin/

Syndicated in the Midwest on the Ideas Network
You can find a list of stations to listen over the air and a link to
listen live via streaming media:
http://www.wpr.org/ideas/
(Hint: Scroll down the page!)

You can join the conversations by using the toll-free call-in number:
1 (800) 642-1234 (Madison Wisconsin listeners please use 263-1890.)
You can also e-mail the program: talk@wpr.org

Tips for callers: http://www.wpr.org/ideas /callertips.cfm

Peace, Maz

[Kim]

Thanks, Maz, I will definitely check it out as my tick problem is out of control.

My last tick report was May 27th when I had two ticks extracted from my head (one at the hairdresser, how embarrassing) that had been there 24 and 48 hrs.  Since then, I've added two more that were also extracted from my head.  I now have 4 ticks that are still alive in a sealed up zip lock baggie after one month!  How creepy is that?  Sometimes when I walk past them and they are not moving thinking they've finally died, I'll flick the bag and they all wake up again.  As far as having them tested it would cost $60 per tick, per test, and there are many tests to choose from.

Weird thing is that neither my husband or neighbors that have all the same exposure ever bother to spray up or take precautions like I do, and they haven't had any bites.  I've lost count how many I've had in the last 5 years, but 4 in this past month alone can't be good.

Take care……..kim…….the tick magnet!

[Patti D]

Hi Maz,

Thanks for the heads up on public radio this morning. I am just moved by this radio show. I have ordered Pamela's book  and liked how she referred to treatment for lyme as,”the wild west of medicine”. I am hoping lots of folks tune into these two shows.

Thanks once again lyme sista for sharing:D

Happy 4th!

Patti

[Maz]

Hi Kim….geez….more ticks in your hair? I'm getting colly-wobbles just thinking about it and reminiscing back to my experience of that day back in May:sick::sick:….and about 10 years ago when I had my first tick extracted from my scalp. I think that may have been my first exposure that just went underground for all those years until the one in Sept '06 when it exploded into my reality.

You poor thing….do you have cats or a dog that may be lying on your pillow? I've started closing the bedroom doors during the day, just in case, because both our cats like to sneak in and lie on our beds when they get the chance.  It just seems so weird that you're the only one having these experiences in your immediate locality, though. 😕 I don't know, Kim…maybe we're just more flavorable than the rest….sort of like some people attract mosquitos and others naturally repel them?

I think it's also a really, really bad year for ticks. My husband came home last night and said that pretty nearly every one of his guy colleagues and even customers he'd spoken to have had a run-in with Lyme this year….full blown bulls-eyes and manifesting in a variety of ways. 

I can't believe your earlier ones are still alive and kicking, too. What the heck are they living off of?

Patti – so glad you managed to catch the radio show. I caught the one yesterday in NYC, as I finally figured out that the website had live streaming audio. I'm a bit slow like that sometimes….such a technophobe! I better set my VDR to record the show on ABC tommorrow morning or I'll forget….although must admit, it always gets my guts churning when they have an IDSA spokesperson sounding all-knowing and authoritive and that anyone who has a differing opinion is a quack. :headbang: I must get a grip!  :roll-laugh:   

Peace, Maz

[Patti D]

Hi Kim,

You are a”tick magnet”:dude:. Surely you have heard that line before:roll-laugh: The only thing I am going to worry about is west nile virus this holiday. We are spraying for the numerous critters at the lake and hope to enjoy some outdoor fun without the constant jumpiness that goes with,”what was that? Did you get bit and on & on & on. I got a new fly swatter that yells gotcha when you nail the bug. So cute!

Happy days!

Patti

[Kim]

Well if I went after them with a fly swatter it would result in me beating myself in the head, and, you know,  what would the neighbors think?

No, Maz, unfortunately we do not have pets to blame.

[Maz]

Hi to all who may have been watching ABC Good Morning America and waiting for the segment on the Lyme Controversy. My apologies, as apparently it wasn't aired this morning as scheduled.

I'd recorded the whole show, but was just informed by the CTLyme yahoogoup that the segment has been postponed. Will add an update when I hear anything.

Peace, Maz

[Trudi]

Hi Maz–

Thanks for the update.  I taped the program and was disappointed when it didn't air.  I did have time to listen to Joy Cardin's interview with Pam Weintraub.  Having been on this board for awhile now, a lot of the information was a repeat; however, it was quite educational for those who are unfamiliar or think it is a quick fix.  BTW, I was checking into some long-care insurance; my premium was $1000 more than my husband's because I have Lyme–interesting–I'm guessing they don't think it's a quick fix!

I also picked up Pam Weintraub's book at the library.  By the size of the book, she covers a lot of ground!! 

Thanks for keeping us informed.

Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[Maz]

[user=442]Trudi[/user] wrote:

BTW, I was checking into some long-care insurance; my premium was $1000 more than my husband's because I have Lyme–interesting–I'm guessing they don't think it's a quick fix!

Hi Trudi,

Sorry about the ABC segment….just got word of its postponement after the show aired this morning, which was a bit late, unfortunately. I had done the same as you and scanned through the recording to look for it. Thank goodness for recordings or else we could have watched the whole thing with bated breath only to be disappointed. :headbang: No doubt, much like the radio show, it will be the same 'ol – same 'ol….but I'm always interested to look for new tidbits as this whole controversy evolves.

Yes, very ironic about your Lyme insurance coverage, considering they follow standard treatment guidelines of 2 to 4 weeks of abx! No doubt they anticipate further complications as a result of infection and possibly IV therapy for the few late cases. You'll find much on this subject in Pam's book near the end, where she outlines insurance company and pharmaceutical company involvement in the Lyme wars.

HAPPY JULY 4th to you and everyone!! May it be a happy celebration that is both thunder storm-free (as we're experiencing nearly every day here in the NE) and tick-free!!! :roll-laugh:

Peace, Maz

 

 

[Maz]

Finally….got the link for the ABC segment on the Lyme controversy which got postponed to July 4th:

 http://abcnews.go.com/search?searchtext=Lyme%20disease%20GMA&type=

This, bearing in mind that the lady doctor at the end is spewing forth the usual stuff about 1 day's worth of prophylactic antibiotic if you catch the rash early and 2 weeks of antibiotic…maybe 4….if not. Also, if one is lucky enough to find an EM rash, not all present as bull's eyes…in fact, probably 50% don't.

What's good about this report is how there was more balanced showing of both sides and the emphasis of the need for ongoing research.

Night all,

and, of course, peace,

Maz

[Patti D]

Hey Maz,

Thanks for the ABC info. Well at least they put it out there right!! I liked how the doctor said it may be “autoimmune or persistent infection”. Well isn't that an interesting statement, putting those two words together:shock: There was a plane delay today in Denver. Seems a passenger found a tick on the plane so they has to get a new plane which gave everyone a 6 hour delay. What next.

[Maz]

[user=287]Patti D[/user] wrote:

I liked how the doctor said it may be “autoimmune or persistent infection”. Well isn't that an interesting statement, putting those two words together:shock: There was a plane delay today in Denver. Seems a passenger found a tick on the plane so they has to get a new plane which gave everyone a 6 hour delay. What next.

Yeah, very interesting! Made me think about when I first saw my Lyme doc and asked that question…so, what is it? Lyme or RA? He said, “Both, but when we get the infections under control, the RA will remit.” That was a lot to take in then…I get it now.

A tick on a plane???? Geez…what next? Couldn't they just remove the tick? And “they” say there are no ticks in other states!!! 😉

Left foot altogether better today…swelling still there like a bad apple, but the shooting pains just disappeared, just like magic. Must have been a herx…an almost weeklong one.  

Peace, Maz

[Kim]

I also read that article about the ticks on the plane in Denver and had to laugh.  Talk about overreacting?  They evacuated the plane like it was a bomb threat. 

Maz, glad your foot is feeling better.  I swear the waxing and waning of these bizarre symptoms is trying to make us all crazy :shock:.  But, that would be another support group;)……….kim

[Patti D]

Hey Maz,

At least your doctor told you you had both lyme & RA .My 4 doctors all had a different idea about diagnosis & treatment. My last doctor gave me a brochure about RA:? . That assured me of getting out of the office without questions in my 8 minute time slot for treatment & evaluation. No wonder we have problems with our medical system. I am curious Maz. Having lived under the Canadian healthcare system of goverment run medical care,was it the same or better or worse?

Oh yeah Kim & Maz,

It's raining today and yes, I am hurting again.I knew I should have not said the rain didn't bother me anymore. This time it's those lousy pin pricking feeling all over the place.:sick:(lyme) My righty & your lefty are still acting up. But inbetween the rain I am going out to pull some weeds. I also wanted to mention I am getting quite of few bruises and even have one on the palm of my hand. It looks like the NAISDs are getting the best of me. The good news is I am down to one Aleve a day at 8 PM.So maybe,this will get better;)

Happy days!

Patti

 

[Maz]

[user=287]Patti D[/user] wrote:

Hey Maz,

I am curious Maz. Having lived under the Canadian healthcare system of goverment run medical care,was it the same or better or worse?

I also wanted to mention I am getting quite of few bruises and even have one on the palm of my hand. It looks like the NAISDs are getting the best of me. The good news is I am down to one Aleve a day at 8 PM.So maybe,this will get better;)

Hi Patti….so sorry to hear about your brochure experience. We're just so vulnerable in those situations, in pain, shock and confused. It's just unconscionable.

It was my Lyme doc who told me I had both Lyme and RA and spent a full one hour and half with me talking me through it and explaining the mechanism…that the Lyme triggered it, basically. My PCP didn't diagnose anything…I just got bloodwork results phoned to the house and his receptionist told me there was nothing more the doc could do for me and I had to see a rheumy. When I asked why, she said it was because I had an elevated RF. What I asked what that was (an exhausting conversation, which was obviously boring for her and like getting blood from a stone), she said an elevated RF meant rheumatoid arthritis. I was stunned…in shock at her cold, casual way of passing this info along. Also that the doc didn't feel it important enough to give me this information, himself. :crying: Not a time I want to recall very often.

As for the Canadian Health system, I don't remember much of Saskatchewan and Ontario, as we lived there when I was quite young. When I moved to Montreal, Quebec from England in the late 80s, I moved from one nationalised health system to another. My experience of both were wonderful and I always got appts for myself and my children when needed with no wait. Doctors always saw us quickly when sick, treated us kindly and service was good. I was never ill enough to be hospitalized, but did have my second child in hospital in Montreal and received wonderful treatment….actually superior to UK where my first child was born and which was horribly mismanaged by midwives and an ob/gyn who arrived way too late – I nearly “bit the biscuit.” My hubby had an umblical hernia surgery in Montreal, as a day surgery, which was also extremely well managed and no interminable waits. Although a non-urgent surgery, he was in performed within a month. 

My sister doesn't have as good opinion about her doc in Ontario, who has no receptionist or nurse and only an answering machine! She does everything herself and apparently her files are just slung all over her office in piles…total disorganization and can take a week or so for her to return calls! I don't think this is really the norm, though…maybe more a reflection of this particular doc's MO. When I asked why she didn't change docs, she said that in her area there was a shortage and waiting lists for new patients of several months. So, it could also be the area in which she lives. Must add, though, that when I received my flippant DX from my PCP's receptionist here in the US,  she did offer to make the rheumy appt for me. She called back within a few mins and told me I had to wait for 6 weeks, till the week after Christmas. There were no other available appts any earlier than this….bearing in mind that I was bedridden at this point and probably should have been hospitalised. My PCP who said he couldn't do more for me, wrote a script for 2 weeks of naprosyn…when I called for a refill at the end of two weeks, he gave me a further 2 weeks, but said that was all he was willing to prescribe until after I'd seen the rheumy. Fortunately, I got in to see my Lyme doc (who has a 3 month wait list) within about a week, as he had a canceled appt. He was the one who got me through Christmas, but as most Lyme docs work 'out of network,' it was out of pocket. So, my experience of private health care here in the US is not good – worse, actually, than anything I ever experienced Quebec.

All in all, wait times for surgeries and doc appt were comparable to here…as well as quality of service. The UK system may have changed a lot since i lived there, but the infrastructure when we lived there was archaic…old buildings, Florence Nightingale-style wards, with 20 beds on either side of the room, with just curtain dividers. The physicians were of excellent calibre, all in all. I just had a rotten ob/gyn, I think, but that can happen anywhere.

Patti, so sorry you're in pain today….I empathize. I'm just coming out of my bad week or two and felt surprisingly good this morning, apart from some knee stiffness and minor aches elsewhere. Hopefully it won't be long before you're through this.

Are the “bruises” actual bruises or could they be hyperpigmentation? Sorry if you mentioned this already, but are you supplementing with Vit C? Also, have you thought of asking your doc about pulsed dosing? Only wondering, as it seems people who do the daily dosing are more prone to hyperpigmentation. Might be irrelevant to you if these are actually bruises, but just thought to ask. 😉

Feel well soon!

Kim – you're so right…the waxing and waning is so bizarre! How one can feel so rough for a day or so and then wake up as if nothing occurred is really odd. Expected at this point, but totally unpredicatable and odd, nevertheless.

Well, my Lyme sissies….sorry for the long post….you know me and my rhubbarbing ways!

Peace, Maz

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