oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
This post comes from the yahoo group Infection & Inflammation and I thought it serious enough to re-post here.
"Update on Aussie Barb, longest CFS follower on MP
Here's a follow up email that I received on Aussie Barb's condition and another patient who recently died. Both emails are being reprinted here in their original content with only minor changes to account for spelling irregularities. I can neither verify nor dispute the content of these reports, but the implications seem serious enough to me to warrant further investigation. penny
Quote Penny,
For those interested in the clinical implications of Aussie Barbs hospitalization as it relates to the MP, her husband gave a brief posting of some of the details 2 weeks into her hospital stay;
"The Hospital staff are taking very good care of her.They are doing daily tests to sort out what is causing all this. The tests have shown she has acute cholecystitis and an enlarged pancreas. They are continuing 3 antibiotics IV and the dexa is at 3mg q12h.The insulin is keeping the sugar stable.Kidney and liver function tests are improving every day."
The scary part about this hospitalization is that it follows almost the exact pattern of another MP patient known as "Fisherman", screen name "jillbc", who passed away in his hospital of Sarcoid/lung complications, just as Aussie Barb was being admitted. "Fisherman" had been on the MP for 2 plus years and stayed with the Benicar/abx medication all the way up to and during his hospitalization until only a few days before passing away.
I suspect there others that are also following a similar fate as many long term MP patients are silently disappearing from the MP website without any indications of an improving or positive outcome. The silent disappearance of the individuals maybe that they dont have active spousal support like Aussie Barb and the Fisherman that can provide an update and outcome as an MP patient transitions into hopitalization. Unquote
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Geezy Peezy! That's scary!
I remember Aussie Barb from 2 yrs ago when I was looking into MP.
None of the doctors I have worked with take Trevor Marshall seriously. They don't agree with his take on Vit D.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
posted
Sad news for sure but this post prompted me to visit the MP site to look for info on this. I don't know that we can determine that the MP caused this when these people were already very ill before they started on it.
I saw a post by the fisherman's wife and the docs had already given up on him.
***** Oct/2006: Very soon my husband 'the fisherman' will have his year's anniversary of the doc's recommendation of a lung transplant too. They did a full pre-transplant work up and told him his lungs were too scarred for a sucessful transplant. And kindly told him to go home and put his affairs in order and make some "tough decisions" about what we would do when he went on the ventilator." *****
How do we know that the MP didn't prolong his life a couple of years? Did his wife post anywhere that she blamed the MP for his death?
And Aussie Barb's husband posted she is still on the Benicar and I didn't see him posting that he thought the protocol was why she was in hospital.
People with Lyme and taking other antibiotics don't always get well either and often take a turn for the worse as we see on this board.
I am not a promoter of the Marshall Protocol -- just trying to keep an open mind because I don't see proof that these sad events were necessarily caused by the MP and not just progression of the disease process these people were already dealing with.
Sometimes people are just too damaged for the body to be able to recover.
Looking
Posts: 590 | From Canada | Registered: Oct 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi there, I said "On" not "From". It is sobering to see people end up hospitalized or dead while on this protocol and should be taken into account.
My concern is that low dose abx can breed resistant bugs over time; and that using benicar as an anti inflammatory may in some cases dampen immune expression. For instance, and this may not be comparable at all, but putting folks with rheumatoid arthritis or lupus or other conditions on drugs like remicaid, an immunosuppressant that clears up symptoms, can render them vulnerable to some terrible and fatal infections.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Well, I must say, this is very sobering........
Looking, you make some good points....
You know, one thing that has concerned me regarding MP is that with all the fear about Vitamin D causing immune suppression, you would think there would be some routine tests that are run on MP patients periodically to monitor immune function or response. Benicar seems pretty heavy-duty to me, and is not well-tolerated by many.
Perhaps I've missed seeing posts about periodic testing, but all I've seen are the periodic 25-D tests.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I find that very disturbing. Aussie Barb has been on that protocol for a very long time. She was there when I first looked into the protocol close to 4 years ago.
What I see is, "is this is far as she has gotten in 4 years on the Marshall Protocol?" You have to remember that these people live in literal darkness, never allowing themselves to be in or near sun light. If they must go out, they are encouraged to wear dark clothes that cover everything including hands and they wear very dark special sunglasses. It is sometimes said they become "cave dwellers." Taking out the trash and collecting the mail only after dark.
That is a huge sacrifice of ones life and then find yourself so sick still you end up in the hospital??? It may not have hurt her, but did any of it really do that much good. Could as much been achieved with just the antibiotics and living a relatively normal life?
[ 29. November 2007, 06:52 PM: Message edited by: Jellybelly ]
Posts: 1251 | From california | Registered: Apr 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Sobering thoughts for sure.
Oxy, I have R.A. and Lyme and now babesia. For one year I ran like a gazelle (only in my mind) away from the immune suppressing drugs used for R.A.
Then when I was re-bit this year and decided to go to an LLMD for abx, the LLMD I see is also a rheumatologist. She got me back to my pre-bite state and even better within 60 days and THEN she put me on methotrexate and Humira which I am switching to Enbrel because the Humira hurts like acid.
I couldn't believe she was putting me on these drugs when I was totally painfree. I still shudder about it. Everytime anyone coughs or sneezes, I cringe.
I'm drinking fresh veggie juices with garlic almost daily and eating a diet high in raw fruits and veggies just to try to stay ahead of the MTX and Enbrel.
Horrible!!!!! But LLMD swears I need it so that when we really tackle the BABS, my joints will not become damaged from the flare.
I'm really having to throw my hands up and just trust the Lord and the doctor. I keep thinking about the homeopathy I began with. I am seriously thinking of how to approach the LLMD about possibly using homeopathy along with the meds. I long for the security I felt when everything I took and did was not harmful to my body.
These drugs scare me as much as the disease does.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I would rethink Enbrel. There are some bad infections you can get on that. I mean, bad. Do some research. PML is one.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Oxy,
I am not being given the choice.
I think I would lose my LLMD if I did not follow this. She hasn't threatened that but I have told her repeatedly how scared I am of these drugs. She never loses patience but she also never waivers.
I'm also on ammoxy, biaxin and plaquenil. Maybe these will pick up the immune system slack?
MRSA, Botulism (just had a local dr and her husband die from this), that scary cold thing in NYC, ticks on my dogs.
I miss the days when I thought I was invincible.
Luvs
I'm dead serious about the homeopathy.
Luvs
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yeah, right. I'm not nervous about this. We're not nervous at all!
Luvs Luvs Luvs Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Luvs, you do have a choice. You have a choice of practitioners. Also you're on plaquenil? I recall that being somewhat immune suppressive among other things (changes pH of cell and allows better killing).
It's up to you but if I were you I would seriously research side effects.
The one thing I've learned over and over this year is everybody will sell you a line that defends their position, selectively perceiving their truth. You can only protect yourself by being your own vigilante in a way.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Yup. Yup.
I researched all the RA drugs and their side effects 2 yrs ago when I was first diagnosed. I sat and cried because none of them are safe. None.
They make Ketek look like bubblegum.
She promises I will not be on them forever. She estimates about 3 yrs. Pass me the garlic juice please.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
It is noted that people with RA do not live as long and the drugs are the suspected reason why.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Luvs, do you really have to? Can you get IVIG? That works just as well and is safe.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I had time to look at the MP site and some postings from AussieBarb detailing her condition before she ended up in the hospital.
The question is, why did she interpret everything as "immunopathology." She was getting *very* ill. This was after four years on the protocol. It is unacceptable to be this ill after 4 years on any protocol, and in addition, it is sad that she interpreted all under the rubric of immunopathology.
The latest post from today says she accepted blood transfusions to bring her hemoglobin level up. She has been in the hospital a month.
Here is a post from Sept 23:
'Sunday September 23rd 6.30am Benicar 40mg Q2 to3H. prn halves etc. Tylenol (panadol) 1 Q6H regularly. added Panadiene half at night. may explore using a little during the day to assess if helpful to movement etc. no abx Dexa 1.75mg Q6H
new pain med, first tablet of panadeine x 1 tablet before bed caused dizziness in bed, so hesitant to use. Took it the 2nd night (last night) as a half dose along with 1 panadol. and the 60mg Benicar and slept wakefully for 4H !! a record. and then had more and slept 2H, more Benicar, and get up to settle backache (kidneys) and leg pain.
as always, usual symptoms as previously noted.
sticky hands, face. gut immunopathology etc strong eyes gummy blurry feet feel like they are in hottish or coldish water most of the time toes, soles, numbish aching, half numb teeth mouth mouth, gums, tongue sore inflamed R big toe op - small ooze continues. keeping clean and w spirits to dry. can slightly feel the application of the spirits at the time is all.
abdomen and full body: firm, uncomfortable to move, in bed or out. Back, kidneys. Legs, ankles, knees, feet.
continuing very weak. all meals have to be cut and put out for me. all management in place.
every movement is a huge effort. I am doing all I can do. I am doing less. I become weak quickly and have to watch that I rest when I need to and eat before I need to.
I have to have a balance of lying down and sitting up. The lying down for some time causes more pain. I am calm. To turn or move in bed is a huge effort. I have worked out if I dont do any thing I can manage.
Making sure of adequate rest, and hydration, regularly scheduled nourishment is extremely important in assisting metabolic functioning in MP, and also for helping to keep symptoms managed .. Rest is a very important part of managing and healing.
The experience of the power of the immune system, of recovery thru high level immunopathology. as per a feeling of aura, gravity, awkwardness, heaviness, weakness, of shock and awe is shocking, unbelievable. incomprehensible continues.
Focussing on the fact that this is recovery immunopathology, facing and managing this moment, supported in this moment, and that I can do it in this moment, is helpful to me. I am fine mentally and emotionally.
Thank you All one moment at a time
8.30pm: a change in symptoms. 2nd time in a row when Dexa is just about due that lower GI symptoms have increased so have decreased the dose to 1.5mg Q6H. will assess.
gut immunopathology, aching inflamed mouth, heavy body, legs and weakness and immobility, wooziness on moving, etc continues.
Last edited on Sun Sep 23rd, 2007 06:33 by Aussie Barb"
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Oxygenbabe, thanks for posting this. It does look awful. Who knows what's the cause, but, I don't know, I can't think being out of the sun is a choice for life.... I hope she recuperates and get off to try some other protocol!
Luvs, sorry to hear you're doubting your lyme doctor. I wouldn't take a drug I have doubts about. I would do everything to keep it away, specially if I have a gut feeling about it.
There are herbal alternatives to try, too.
Is your homeopath far from you?
I think confidence is the most important thing in any treatment. If you don't trust, I doubt anything will ever work. Placebo working to the bad side, before starting!!!
Just my opinion. Hope you'll get better. Babs makes us feel bad!!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
| IP: Logged |
I don't know anything about the Marshall protocol. Is the idea of avoiding the sun and the need for this approach individually based?
My LLMD recently told me that his patients out here in Hawaii are doing way better than expected and he wondered if it was the sun or climate that was helping us along.
Even before I started doing better just getting away from winter helped my symptoms :-)
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
| IP: Logged |
posted
Interesting discussion, thanks for bringing it up. It's easy for us to speculate what any MP patient's condition may be - as doctors (at least in the U.S.) are terrible at providing diagnoses that involve pathogenic infection. And I don't know if that was Barb's affliction...do any of us?
Last year, I was bed-ridden with Lyme, mycoplasma pneumonia and a partridge in a pear tree. Thirteen months into the Marshall Protocol, I continue to improve while also experiencing dramatic herx cycles. I just went through four weeks of fatigue and coughing up crap that was (most likely) the mycoplasmic infection around my larynx & lungs (noted on MRIs but dismissed).
After seeing profound changes in my body, and obvious signs of infection eradication, I don't need any more proof about the MP efficacy. I am glad that I am ridding my body of these pathogens now...so they don't show as something far worse down the road.
I've been lucky, in that I've never been light sensitive. But I've talked to a lot of people that are BEFORE they even start the protocol. That always puzzled me, but I don't try to figure out some of these peculiar things...I just accept them as I've heard that from so many patients.
The MP is not for everyone, but it continues to help the patients who have the right attitude, condition and discipline to plow through the difficult herxing.
In the meantime, I don't disagree with anything here. I am happy to help in any way, just email or PM.
Peace, love and better diagnostics for us all!
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
| IP: Logged |
Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Hey, Luvs -
Before you push too hard for including homeopathy in your treatment, DO contact your homeopath for a consult about this.
Immune-suppressing drugs are some of the few drugs that CAN really interfere with homeopathic medicines. But some of the drugs you are talking about are relatively new, and I would check with your homeopathic MD to see what his experience is on this. He may have a completely different opinion based on his own research or what he has seen in his practice (and I hope he does).
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
From the yahoo group Infection & Inflammation, further update on AussieBarb. My take on this is that, perhaps the MP led to this, perhaps it didn't, but indirectly *it did*. Why? Because she interpreted her symptoms as "immunopathology"--as the ability of the protocol to kill infection, when in fact, it was not able to, and she has a badly infected gallbladder that has not responded to IV or oral abx treatment.
"Here's the latest update. Unfortunately, I cannot communicate with the person sending me these emails so I can't vouch for their content or cite the actual source of the quoted material.
Update received today on Aussie Barb's condition:
Subject: Re: Update on Aussie Barb, longest CFS follower on MP
Latest update, things are still very serious;
"Barb has had more bad news today.In spite of the treatment,the pancreatic enzyme lipase reading is 90 when normal is 40.This is the highest reading yet.The pancreatitis is caused by acute choleastitis (infected gallbladder).She is back on clear fluid diet to rest pancreas.Today she is having a CT scan to check all.Oral antibiotics continue for the gallbladder.The Doctors say the gallbladder has to come out as the infection is not/has not resolved.Doctors say gallbladder is causing pancreatitis which is life threatening.Barb cannot see any other answer as she has been on antibiotics for 3 years already. She has been shocked by this turn of events as she thought she was close to going home even though she was still weak re mobilising etc.The haemoglobin has risen to 11 since the transfusion.Thank you all once again for your continued support and care."
It sounds like Aussie Barb needs to have her gall bladder removed as it's badly infected and not responding to treatment, even though she was unaware of the condition. If this really IS the case, it just reinforces my thinking that so many pwc are probably sick due to unrecognized infections. AND tinkering with low dose antibiotics for a chronic infection is a huge health gamble.
penny "
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[loco]](graemlins/loco.gif)
![[Wink]](wink.gif)
one moment at a time![[Roll Eyes]](rolleyes.gif)
![[Smile]](smile.gif)
Printer-friendly view of this topic