MediTest
27 Apr 2018
Author
Elinor
Title

A chance to have your say?

Body

From The Sunday Times this morning......http://tinyurl.com/ynk6gx

Comments

We on this site demand a choice - we don't comprehend the reluctance of those with the magic pen and powers. We know what it is to deal with this every minute of every day. This is an age-old argument but we all in the end have to decide how much we as indivuals can stand. The main thing I am sorry for is that she had not heard of David and Sarah. Still, we know that there are going to be some casualties, unforeseen and by the law of _____. The members of our site are doing the best we can to reach people who are approaching the end point.

 

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 43 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

I saw this in The Sunday Times, but I couldn't bear to read it at
first  -  she was living less than a hundred miles from us, but the
British MS Society holds sway, with its  "MS, an incurable degenerative
condition affecting the central nervous system."  I have seen this phrase
cut and pasted so many times and I gave up posting on their website very early
on because I kept getting my posts removed.
 
I would like to think that if I had a truly incurable disease and was
likely either to loose my mind or not be able to take care of myself, I would do
the same thing.  However, as things were with me, my disease progressed in
such a way that I had lost my mind before I could even admit that I was
ill.  David saw what was happening and would have killed
me himself, and then killed himself, but he found the Vanderbilt patent in
time.
 
I can't say any more.........Sarah
 
Stratton/Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Good Lord! Would someone in the UK at least write a letter to the editor of this paper that this poor woman at least had hope of recovery if she knew about the Cpn treatment?

Raven
CAP since 8-05 for Cpn and Mycoplasma P. for MS and/or CFS

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

 

Raven if you click on 'have your say' at the end of the article you can write to them, there will be MS sufferers reading that piece.

 

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

It is so sad that she thought she did not have a choice, when in fact she could have chosen not only the time of her death, but life itself.   I have had my say in reply to this article.

Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

I am horrified. In the truest sense of the word, just horrified. The tragedy here is the pigheaded refusal of the medical 'establishment' to make available a treatment that sits right in front of their noses because they simply won't admit they could have been wrong all this time.

Imagine she was any one of us, as well she could have been. With the antidote sitting on the table, she was denied the offer of the cure and therefore felt she had exhausted all possible choices. A wholly unecessary tragedy for her and her family.

I am an advocate for choice in dying, so please don't misunderstand me, but in this case someone was forced to make the choice because no one offered her our option. We really need to make people so aware there IS an option that they stand up and with one voice DEMAND the medical community provides treatment.  I am heartsick.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I posted a comment to the "have your say" but it is not showing up.
Raven

Feeling 98% well-going for 100. Very low test for Cpn. CAP since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NAC,BHRT, MethyB12 FIR Sauna. 1-18-11 begin new treatment plan with naturopath

Steve and I discussed this woman's story.  We agree that it's a tragedy, that she could have received effective treatment if only the status quo of medical fashion were shaken up by reality.  We disagree with some of you though on the suicide issue.  Okay, yes, we're Catholics.  No apologies there, and no Catholic apologistics here.  Just going on record that not all of us feel the same about suicide, euthanasia, abortion, etc.  It smells very nearly like eugenics directed at oneself. 

Who has the right to decide when a life has no value?  Who has the right to say that a life has become so miserable and full of suffering that it's justifiable to off yourself or someone else for that matter?  Obviously, many of you think the individual doing the suffering has the right to decide.  Some of us believe that we don't have the right to make that choice, that our lives don't belong to us, that those matters are the province of God alone. 

Now, this website is not about religion, but the subject that has arisen on this thread treads in those waters.  I've said my piece about it.

Somehow, the fact that this woman was depressed and had been depressed for a long time seems to have fallen through the cracks.  Now, for a really controversial statement, as sad as this story is, it's possible that having MS might have been much less a factor in her suicide than the depression.  I'm suggesting the possibility of a life that was so troubled, a chronic debilitating illness was perhaps the perfect justification to do something she was already capable of doing.  Lest you think I'm callous, remember, I've watched the love of my life suffer in the grip of the MS monster.  The watching and waiting of the caregiver is also unspeakably cruel.  Yet. we have remained happy and feel we have been richly blessed to have each other.  Steve has had two neuro-psych evaluations since learning he has MS.  The results of both of them were as devastating and depressing to hear as the MS diagnosis, but both times, he was found not to be depressed.  Thank God for that.  MS is serious business, but so is deep depression.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / CAP since August 06; antivirals; heavy metal chelation; Metanx; Lunesta; Lauricidin; GF/CF diet; oral IgG/lactoferrin/IGF-1 booster; astaxanthin; gamma oryzanol.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Joyce,

I thought the same thing when reading the article - it was the depression that was not handled or treated properly, that drove her to make the decision she did.  I too was sick reading that article.  By the way, Raven's and Michelle's comments are both listed following the article.  So they are there today. 

Goodwife,

Hubby dx scleroderma Aug '06; Mino 200mg/day Nov '06; Cpn/Mpn Jan '06; NAC Feb '06; Azith Feb 14, '06

Hubby dx scleroderma Aug '06; Mino 200mg/day Nov '06; Cpn/Mpn Jan '06; NAC Feb '06; Azith Feb 14, '06

Well, that is very sad indeed.  I'm with Joyce, that poor woman must have been severely depressed.  How bad that she didn't have medical people to help her.  The Medical Establishment in general has a very narrow view of medicine they learned in school & don't think out of the box.  They forget, the times they are a changing & so is research & knowledge evolving as it should be.  Medicine is not a static business.  Research is being conducted all over the world everyday.  On the other hand, how can they keep up?

Case in point, the Neuro I just saw, a young woman, out of school maybe 3 years.  I asked her if she felt there was any infection, biological cause or affect for MS & she quite flatly said there is not.  Time & education will prove her wrong; but in the meantime, what is she doing for her patients when she is not willing to look deeper!!.  Then again, perhaps, God willing, I planted the seed.

Frustrating, but my disability insurer doctor commented how "unconventional" it was for me to seek answers from a Specialist in CFIDS & FMS that is in Seattle Washington, just a quick flight away & only a 45 minute drive from Vancouver a major port city, just across the 49th parallel!; not out in some salt flat in the remote area of Russia or anything, no offence implied.

Anyway, that is sad.  I suffer from depression because of all the stuff my body has to deal with & have been labelled by some whack disability insurer "specialits" as possibly having some personality disorders.  Depression has caused me to think about suicide when I have been really down, but I am always reminded; it is a permenant solution to a hopefully temporary problem.  My guess is, once the yin & yang are balanced once again I can say good bye to the Inositol too.

This has motivated me to see about posting our site on our local ME & MS sites.  I will check to see if they link & it stays up when I can as I am still brain defuggly at the moment.

In Christ With Faith

Ruth

 

CFIDS/ME, FMS, IBS, EBV, Cpn (375 mg Metro, Minocycline 100mg 3Xwk, Nystatin 500,000U 3 tabs 3X day, Fluconazole 100mg 1X wk), Babesia, insomnia (take melatonin, GABA, tarazadone, temazepam, novocyclopine, allergy formula), peri menopause, starting NAC

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

D W

Joyce,

I used to half-believe in 'that vast, moth-eaten, musical brocade / created to pretend we never die' but now cannot; I feel the better for my lack of faith. Anxiety now seems more honest. I don't mean to promote myself, but here is a short essay which treats with this.

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. Now on intermittent treatment. BP day before yesterday 112/80]

D W - [Myalgia and hypertension (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazole. No medication now. Morning BP typically 110/75]

Am I glad that both Michele and Raven have been published.  I felt I
ought to write so that other MS people would know, but was reluctant to because
of the lady's family.  They didn't know that there was another possibility
and might have just thought they were being told about another snake
oil treatment.
 
Joyce, she was only diagnosed with MS at the age of 48. 
She probably had had it in silent mode for a lot longer, and it tends
to follow that the older you are when diagnosed the more rapid the
progression.  She as a nurse will have known that.  I will go further
and say that her depression may have had a lot to do with this silent MS. 
Whilst one would never get over a child dying at three months old, the second
child dying at 25 can't have been that long ago, but it would have been yet one
more nail in the coffin. 
 
When I told my friends and family that I had been diagnosed with very
aggressive secondary progressive MS they were dumbstruck.  Even more so
when I said that I had developed it at 24, twenty years before.  I had been
able to keep quiet about it for many years and even got to disbelieve myself
that I had it, but a normally cheerful, optimistic person, I would spend hours
sometimes, sitting on the floor, hands around knees, crying my eyes out. 
Nobody knew that because I lived by myself until I married David.  I used
to think that before I became so bad that I wouldn't be able to, I would kill
myself.  I wouldn't expect anyone else to do it for me and an organised
thing like Dignitas seems quite gruesome.  I would have planned it
carefully.  However, as I said above, my disease progressed in such a way
that I was totally euphoric and didn't believe there was anything wrong with
me.  The diagnosis came like a bolt from the blue.  David knew that I
would hate living totally dependant on people, a spastic, bunched up heap in the
corner so he would have done what I couldn't do.  This isn't eugenics, its
suicide, or assisted suicide, voluntary euthanasia is maybe something
else.........Sarah
 
An Itinerary in Light and
Shadow
Stratton/Wheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.

Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Well, here I am in tears again, I read the story in the newspaper yesterday and like Sarah couldn't read all the way at first because it made me cry.  There was a picture of the lady with her baby grandson which haunted me all day along with the thought  'if only she'd known'

It wasn't the suicide debate that prompted me to post it but the empathy I felt with her and her family and the feeling that we hold hope in our hands and have to 'pass help forward' so how interesting to read everyones reactions.

Joyce, as ever, you go straight to the heart of the matter with your observation that 'the watching and waiting of the caregiver is also unspeakably cruel' which says that we truly are all in this together.

In strong relationships such as some of us here are so fortunate to have each partner can identify with the pain of the other one whether carer or sufferer and how lucky we are to have such relationships.   In another discussion JaniceC pointed out that many people have to struggle through illness and treatment on their own, my heart goes out to them  with a wish that everyone could have the support we know and cherish.

Joyce, you are lucky to have a strong faith that has helped you so much too. I was brought up as a Catholic, convent school and all, I was in the choir and loved to sing the latin Mass and can still remember all the words to the Panis Angelicus. The beauty of the music wasn't enough to keep me in the  church though,  it left me restless and dissatisfied without ever knowing why until years later I read The Dancing Wu Li Masters and drifted off down the pathways that Dr Wheldon opens up in that wonderful essay......what a gift  to be given on a foggy Monday morning.   

I would love to be able to put things into words so eloquently DW,  for now I will take your gift of medical healing, thank you.

This has been a most interesting pulse.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAP, doxy/roxi/tini  for ME/CFS/lyme borreliosis, positive Cpn and borrelia. Started Aug05, stopped Jan06, started again Sept 06.