posted
I posted this in BettyG's Lyme Video section but I wanted to bring attention to this new video. It was posted a couple of days ago on YouTube by the parents of a college-aged Lyme patient.
They've posted this video in the Activism section of YouTube. The video is a compilation of photos and written narration on their daughter's illness.
It is 9 minutes in length. It's titled, "Marie McQuhae Lyme Disease."
We emalied a few times. My heart just goes out to her and her family.
I wish she could get some treatment and fast......
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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jamescase20
Unregistered
posted
If no IV I would do minocin and rulide and bactrim, all 3 good bbb crossers. THANKS COOL SAD VID
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tdtid
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posted
Wow...thank you for posting the link. It's certainly a tear jerker and I hope they can get the help for Marie that she so desperately needs.
Please keep us posted on her journey if anyone has contact.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
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sometimesdilly
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Member # 9982
posted
I am still crying. Unfortunately, I can begin to understand her mother's despair.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Wow! I am still crying. I feel so sorry for her and her family. I have a 14 years old daughter,and could'nt imagine going thru that. I don't understand why this has to happen. There has to be someone out there to help her. I feel so hopeless. Atheana
Posts: 196 | From from a far | Registered: Jan 2008
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My daughter Marie McQuhae is suffering from a disease that BC doctors refuse to treat - commonly known as ``lyme disease''.
What it should be called is'' Tick Borne Infectious Disease'' (TBID) - or even better, Vector-Borne Zoonosis.
I have a short video clip of Marie being discharged ''on the grounds of her doing much better'' from our local hospital on April 23, '08 after a 16 day visit. http://www.youtube.com/user/mariemcquhae
The doctor overseeing her care dismissed any evidence of Lyme disease, even though she has two positive tests for Lyme disease from government certified labs recognized thoughout the US and Canada, and an "Equivocal" for lyme from the BCCDC that would be interpreted as a positive by most lyme literate doctors.
CBC news reporter Kathy Tomlinson reported the story about Marie on their GO PUBLIC segment. However, before the story could be reported, as a precaution and for legal reasons, her manager, Luke Brocki required documentation to support my claims that Marie had been refused, denied, harrased, interrogated and insulted by BC doctors and infectious disease specialists.
I gave CBC NEWS the documentation, and their lawyers gave it the thumbs up. To see the report just Google ``Marie McQuhae'' and you will find many links about her.
On March18, '08, we traveled to Seattle to consult with a well know specialist. Upon arrival, Marie had to be carried in to the Dr's office for her appointment.
The Dr. was clearly shaken to see the critical condition Marie was in, the results of Marie being continually denied treatment by BC doctors, and the resulting very late diagnosis.
A lyme literate Dr in July of 2007 at his Vancouver ``Private Clinic''confermed our suspicion of Lyme Disease. The late diagnosis was due to the fact that BC doctors had continually told us that Lyme disease is very rare, and not considered to be a concern.
Marie's original family Dr reported that there is NO Lyme disease here, without even investigating for TBID, recommended psychiatric treatment, even though the Mental Health professionals had already not been able to find mental deficiencies that explained her deteriorating physical condition.
Marie has not received proper medical treatment and her condition is now ``critical''. She does not have a family physician to be her ``advocate'' for prescribed treatments and the many necessary tests needed to monitor complications from the drugs and disease.
She struggles daily with tremendous pain and difficulty trying to breathe, eat, sleep, walk, talk, etc. She may end her struggle by ``Paying the ultimate price!''
Our family is exhausted emotionally, spiritually, mentally, and financially from trying to navigate through the politics, and arrogance of the Infectious Disease Specialists and Health Regulators.
Supposed "specialists" who claim that Lyme disease is rare, even in the face of the recently released Lyme Disease Review 2007 (Health Canada) with BCCDC's own surveillance reports showing that many areas in British Columbia such as Tofino, Duncan, and coincidently, many other high human population areas are ``hot spots'' for ticks (they don't collect many infectious tick species, fleas, lice, mites, and biting flies that carry the bacteria that cause Lyme and related infections!).
This disease is the new Aids! It is the fastest growing vector-borne infectious disease in N. America.CDC reports show incidences of TBIDs outwiegh AIDS, West Nile, and SARS combined.
To see the world-premier documentary trailer, check out Open Eye Pictures' new movie ``UNDER OUR SKIN'' for a very disturbing look at what we are experiencing with our daughter: http://www.openeyepictures.com/underourskin/index.html
I am amazed at Marie's solid conviction in her Christian faith, she has suffered and endured years of tremendous physical and emotional pain.
Her prayers continue to go ``unanswered'' as well as those who continue to pray for her. She maintains her loyalty to Jesus Christ, which baffles me as I struggle with my faith.
Marie is a truly amazing young woman, who has demonstrated to us (her family), integrity, character, fortitude, and a personality that is clearly coming from a "Divine Source".
She continues to battle on daily, without the co-operation or help from our Government and a very hostile Health Care System that is also refusing treatment for thousands of people in North America.
Yours very truly; Jay Mcquhae (pronounced mcqway) ph.250-715-7665
Posts: 370 | From NJ | Registered: Dec 2007
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bettyg
Unregistered
posted
i'll watch the video tomorrow; hubby is sleeping now; don't want to wake him up.
wow, what a powerful letter from her dad!!! wow!
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posted
I just sent the letter from Marie's dad throughout my email friends and Myspace
I know Marie through email and the MP and I just cannot believe the state that she is in.
If you google her name there are many articles about her. This is just heartbreaking.
Please keep this going.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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posted
What gets to me the most is that she had a positive Lyme test and they still wouldn't acknowledge it. Then they released her like that!!
What do they think, that she is just depressed!?!?! I wish ducks like that would come down with LD themselves.
Ok, now that I got that out...
I cried for an hour after I saw the video last night. I had my husband watch it and even he was glossy eyed because in her he saw me. In her I see countless others.
Must countless people with TBDs die for health department politcs?
posted
One small way we all can help from our own chairs in front of our own computers is to view this video and even rate it and comment on it. Send it to friends and acquaintenances and ask them to do the same.
An awful lot of people peruse YouTube. If enough people view this video, rate and comment on it, it might make one of the "Top" lists, i.e., top viewed, top rated, etc.
This would be one way to get the message out about Lyme and also about Marie's situation.
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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posted
How sad. It made me cry. It made me feel stonger too though, like, I've got to do everything to help myself so I can help others one day. No one should have to suffer like this...
-------------------- "We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us" - e.m. forster Posts: 921 | From PA | Registered: Jan 2004
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posted
For some reason Marie's videos have been taken off YouTube
I dont know what happened???
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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i guess they made it longer with more info at the end...
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
the video(s)are still.
how to find-
1. go to YouTube 2. enter "Marie McQuhae Lyme Disease" in VIDEO search 3. voila. 4. its a great idea to leave a review and to circulate the video as widely as possible.
the 7 short minutes the video shows of Marie's story makes a very compelling case. it is also heartbreaking for sure.
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
I think Jay consolidated the two videos on Marie that he'd created and uploaded. His account is still the same. He has also created an email account which is listed in this new video for those who can help in some way.
I edited my first post in this thread to include the link to the new video on Marie.
It might help for us to rate and comment on this new video.
Fuzzy
Posts: 503 | From Maryland | Registered: Oct 2007
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oxygenbabe
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posted
There's no information on what treatment she has received so far, so it's hard to make suggestions for her.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Here are a couple of more links. These are to the two GOPUBLIC news pieces that were evidently aired on Canadian TV. Marie's father, Jay, referenced these interviews in his cover letter which was posted by Trish in this thread.
posted
Very sad. I don't understand why she is not being treated. When her parents took her to the llmd's didn't they get treatment? I am confused or did I miss something?
Posts: 433 | From new york | Registered: Dec 2004
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oxygenbabe
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posted
I emailed suggesting hyperbaric, as I have been to an excellent reasonably priced hyperbaric clinic in Vancouver, which is probably near them.
I don't understand what the 3 LLMD's did and what her treatment regimens were. Someone on here mentions that she met her through the MP, if that is Marshall Protocol, then perhaps part of the reason she's so sick is that protocol which has helped a few people a lot and harmed a few people a lot.
Perhaps they are trying to raise funds to pay for antibiotics out of pocket.
OTOH high dose amoxicillin for instance is cheap and often effective, in the meantime.
Too much information is missing.
Posts: 2276 | From united states | Registered: Jun 2004
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We all know this story and many of us have experienced it ourselves.
It would be really good if they would add to their video that they are doing things with regard to treatment and not just giving up doing nothing because of the system and doctors. (and the belief that it is too late, too far progressed for antibiotics to be effective.)
Maybe it is. Because it sounds like she did try antibiotics and either got worse or stayed the same.....what most around here consider being patient or herxing.
This would be helpful for those outsider viewers who can't have a clue how terrible lyme is, the disease itself and the treatment from the medical community,
To see that she is trying.
Only because I know others will judge and be judgmental, even with the pictures of how she was before this disease struck.
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Thanks for the ref to her MP postings. I cannot even bear to read them, it's like they diagnose online and its always immunopathology. If I recall, Marie's boyfriend if its the same Marie which it sounds to be, posted on lymetopics, they were going to try MMS. Her kidney function had gotten bad on MP and she was forced to stop by her doctors, per postings on lymetopics. It seems to me that she got so very ill from persisting with the MP and she needs time to heal before trying other 'killing' methods, and I did post this on lymetopics. And I suggested hyperbaric as it will help heal her. I can't say more, it's tragic, and I know firsthand from salt/c (which still affects me I believe) that deluded "patients" and deluded "gurus" who have ego and sometimes money at stake, can go a long way towards pushing people to do very harmful things to themselves.
I'm sure her parents meant well, but the sorry fact is, if it's the same Marie which I suspect, her doctors are not going to be at *all* cooperative after seeing her persist with the MP to the point of kidney problems.
I wish them all well and reiterate what I learned the hard way: first do no harm. Stick with treatments that at least have some basis. I do alt med but it has a sound basis and is used for other conditions (I do hyperbaric, IVIG, IV glutathione, IV vitamin/mineral push, oral frozen peptides etc). There is science to back each and the possible side effects are ones I can read about in JOURNAL studies and act accordingly.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Marie was on the MP for 5 months, She was VERY VERY ill at the START of the protocol.
She was herxing off of the antibiotics which of course made things worse and her kidneys paid for it. Although the Benicar may not have helped in her situatuon, we will never really know. (remember I ahve personally emailed with Marie)
You have to understand how very ill Marie was to begin with.
Listen I am not gonna sit here and DEFEND the MP, but many of you take some of the SAME antibiotics that are taken on the MP.
I dont understand what the issue is? I'm sorry but than I guess the antibiotics you take and at even higher doses must be voo doo.
I have personally been on the MP. I stopped because I need to do other treatments first, but I really dont understand the bashing on a treatment that most of you do...without the use of Benicar.
Yes, maybe it is NOT for everyone LIKE Marie who is very very ill and needs to do other treatments.
Other than that it is not her parents fault that they wanted to try everything and anything possible to get thier daughter back.
Lets just focus on trying to get Marie's story out and how we can help her.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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oxygenbabe
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posted
You can't help someone if you don't know the whole story, and what was the history with the 3 LLMDs.
Antibiotics used in standard care of patients by LLMD's do not result in severe kidney issues. MP has, because of benicar.
What kind of help is it Marie and her family want? I'm confused, truly. Shouldn't one of the LLMDs be helping? I suggested hyperbaric if they have not considered that. Are they trying to fundraise? If so, state it clearly.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Marie is seeing an LLMD in Seatle. I am not too sure what they will be doing for her there, but I know they are seeing this doctor.
I know she has tried Rife, MP, and some other treatments that were mentioned on this thread already. I am not sure what she is on now, but if she is seeing an LLMD than I guess they are doing whatever it takes.
Marie has that gene that makes it impossible for her to detox, so she just continues to get sick during treatment because she cant get rid of the toxins. Which I think is one of the reasons she did not do well on the MP. That is my guess.
And yes I believe they are trying to fundraise because of the finacial strain and also just trying to get her story out for sake of awareness.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Such a beautiful girl. I hope they can find the right treatments for her, and soon.
She reminds me of how I was three years ago. I was so, so sick - but I've come a long way since then!
I, too, have the bad detox gene. I think she can get much better than what we see in the video.
At least, I hope and pray she can. Poor doll.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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heiwalove
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Member # 6467
posted
i was that sick at one point, too. she CAN get better. i know she can.
unexpectedills, i think the problem a lot of folks here have with the MP, aside from the fact that so many people have ended up sicker, in the hospital, with kidney failure while on the protocol, is the fascist-like way the MP site is run. i, too, can barely read through that thread; it makes me SO angry. especially that blond nurse (can't recall her name at the moment) who is just so awful and patronizing in response to marie and her loved ones' posts. ugh. just makes my blood boil.
plus they attribute all adverse affects, no matter how severe, no matter what the patient's actual diagnoses, to 'immunopathy.' that is highly unethical, in my opinion.
I AGREE with you there. I was also VERY upset at the treatment Marie and others (including myself) have endured.
I was not going to do this, BUT I will......I was banned from being part of the MP study because I guess am too ill and the protocol started making me very ill. I also asked questions that I guess were not SUITABLE for that site
BUT...I will not thorw away the baby with the bathwater. I know of plenty of people PERSONALLY that are being helped in a HUGE way from doing the MP..
I will not go into details right now of my case because I am feeling TERRIBLY at the moment. But I did endure some **** from them and cried many a time.
So I am coming from a place of complete understanding. I just think there really is something to the MP...weather it is for everyone or not.
I was outside in the sun today to go to a doctors appointment...and low and behold I am laying in bed right now in agony with what feels like the worst case of the flu I ahve ever had. Which shows me that the VIT D thing effects me in the way the MP describes and I used to be a sun worshiper and now the sun makes me ILL.
I agree about the mistreatment and everything always being a HERX.....I always aksed those questions when I was feeling so much more horrible than usual and that the short generuc answer I always got. ALthough I believe I DID herx pretty intensly from it.
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
If Marie has detox problems, which I do too (if I were a betting gal, I'd bet I have the double whammy of genes that make it difficult to detox both lyme and mold), I would suggest hyperbaric oxygen, IV glutathione, and charcoal. I would suggest low dose of anything, like ArtistDi does very low dose antibiotics. They can be very effective in a person who doesn't detox well (perhaps we don't metabolize drugs as well and we end up with higher blood levels btw).
For people like that, herxheimers need to be very light and mostly avoided. The body needs to be supported, supported, supported.
After I did salt/c, and I *still* feel weakened from it in some significant way 17 months later, I am not nearly as strong as I was prior to salt/c, anyway, I stopped all interventions for about four or five months, then I started back very carefully with tiny amounts of IV glutathione and IVIG, and only went back to a more normal protocol for me about 10 months later. I wanted to give my kidneys a rest.
I think after doing a harmful protocol, one needs to let the body repair. Thus rest rest rest and good nutrition. Moving on to the next killing protocol before it has healed and restabilized may not be wise.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Thank you Fuzzball.. Made me sad. This disease and the politics and a lot of other things suck. Posts: 588 | From Rhode Island | Registered: Jun 2006
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bettyg
Unregistered
posted
from member salty sue about her canadian friend,
"You are right Marie's story is so incredibly sad. I just found out that on the day of the rally she will turn 24, she is not well enough to make it to the rally but she will be remembered there."
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posted
I have emailed her back and forth (and also her boyfriend), I know she was on MP for awhile, then was trying MMS, a doug coil machine, and last I heard her dad took her to see a LLMD in the US and the doctor prescribed zithromax and bactrim. The LLMD said she was too sick for IV, and needed to start with that.
I haven't heard from her since, so I don't know if she was doing that or not. I didn't listen to the video yet, but thanks for posting this, I'll listen now.
Posts: 871 | From NJ | Registered: Mar 2007
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I agree that the asking for money is a turn off, especially since the general population has no idea how hard the disease is and how hard it is on families and on finances.
My impression, after sending an email to offer a prayer request, and being asked by the man fielding emails for a monetary donation if I am in a position to do so myself....when I am in as dire straights if not worse than thay are!
Is that they are simply IN SHOCK.
NEED SUPPORT.
And may not realize just how many people are in the same boat,
As sick as Marie
And as discriminated against as Marie,
And as financially strapped.
If you contact them and suggest joining forces, and perhaps contact a few others
Then try to get it out as a group to the media....
Perhaps it will help Kaya, Marie, me, and all suffering.
Because I agree.
I've been that sick for a long time and never touched the MP.
Yes, I've seen it. It's posted on page one of this thread along with the follow up CBC news story on Marie.
Kaya,
I am so very sorry to hear about how ill your daughter is. I can't imagine how painful it must be to have to deal with this issue as a parent. My heart really goes out to you.
And just to comment on some of the other things that have been shared in this thread:
Marie's father, Jay, indicated in an email to me that they "are really getting alot of reaction from the public who are demanding answers from our politicians and health regulators."
As has been shared in this thread, there are alot of "Marie's" in the world right now. So many with Lyme have been, currently are, or will be extremely ill -- finding doors shut in their faces everywhere they turn. In truth, haven't we all experienced doors shut in our faces while trying to seek diagnosis and treatment?
That's why I feel it's helpful to get the word out and let the rest of the world know how ill this disease makes us and let it be known what the reality of the current medical/political climate is.
It's also paramount to educate people on the toll this disease takes on not only the Lyme patient, but everyone actively involved with the patient.
The only way to effect a change in the current tide of willful ignorance and blatant refusal to deal with Lyme, is to insist upon a change. Sadly that can't happen until the non-Lyme aware population sees for themselves the truth of what's going on. That's part of what makes Marie's video so powerful.
Unfortunately for most people, they simply can't appreciate something unless they see it on screen, either t.v. screen or movie screen.
I empathize completely with any parent or family member who desperately tries to help a Lyme patient. Putting out a call for any kind of help and support, whether it be suggestions, political pressure or whatever is understandable.
Fuzzy
[ 02. May 2008, 06:22 PM: Message edited by: FuzzySlippers ]
Posts: 503 | From Maryland | Registered: Oct 2007
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That sounds great about joining forces. Have you contacted your local media??? They would be able to film something for you for FREE. Then maybe your local story would spread and you could attach that along with Marie's.
I know you are under tremendous pressure and I wish the best for your daughter, just wanted to post the idea, in case you might have the energy for it.
posted
Does anyone know if this girl recovered? I have been searching but I havnt been able to find anything recent on her.
Posts: 39 | From Northern California | Registered: Mar 2010
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posted
I met her parents about 6 months ago and apparently Marie had been on IV in San Francisco for an extended period of time and was becoming very active and even playing soccer. There was concern of some liver issues ongoing but she still had a PICC line at that time.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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posted
Wow thats awesome. I was watching her videos and it broke my heart.
Posts: 39 | From Northern California | Registered: Mar 2010
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I wonder why her success wasn't as widely publicized as her illness? I think we all heard about her and about how to donate a couple years ago. I wish her success story had been as widely publicized! We need to hear about these stories! It's a shame you can't even find that information on a search!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
It's because it's not a success story just yet. She's still toughing out treatment with a lot of ups and downs.
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