Devastating. This is why I'm a little evangelistic about the Wheldon Protocol
Something happened a few days ago and I couldn't even bring myself to think about it for awhile, much less write about it.
A woman, from out of town, visited Chicago last week. She went out on the town, had a great time, a great meal, smiled and laughed with the people she encountered, then went back to her hotel room and shot herself to death. It was learned afterward that she had just been given the diagnosis of multiple sclerosisi and, feeling she had no options, she came to the big city for one last hurrah and ended her life. I am in tears now, as I was when I first learned of this.
I have in the past been, and surely will again be accused of being evangelical about abxi as a means to recover one's health in the face of multiple sclerosis. I can only wonder and never know what difference knowing about this site and this treatment would have made for her and her loving family, who apparently only learned of her diagnosis on being informed of her death.
This is why I carry business cards that simply say "CPNHELP.org" on them and give them to people I think could be helped by this site. This is why I can be strident about people's excuses for not trying this treatment. This is what I can do to spare someone, anyone, the hopelessness I felt when I first heard my own diagnosis in August of 2005.
Please, if you ever think twice about sharing the information about cpn and the antibiotic protocol, think again about this young woman with everything to live for, who simply didn't know it. Every time I hear multiple sclerosis isn't fatal, I shudder, because too many times it so needlessly is.
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Mac,
There are many folks that commit suicide that get diagnosed with CFIDSi as well. Although the illness isn't fatal, it makes some feel like they'd rather not live unfortunately.
But, like you've said, there is hope and much to live for, especially with help here and treatment and a brighter tomorrow.
3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I doNACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
I find her sense of defeat hard to understand. Perhaps she watched a relative go sharply downhill. If you remember Dr. Fubar, he has had chronic progressive msi with a lot of pain since about the age of 30, 28 years. Whenever he thought of ending his life he would think about the possibility of they're coming up with a cure the day after his death. While I struggled with the diagnosis and how to live with it for a while, I eventually came up with a workable solution: complete denial. I am going to get well. And with cpnhelp, it will happen. So I'm with you MacK. Except I don't keep my diagnosis a secret -- I tell anyone who will listen and then tell them about CAPi. And amazingly, I find that my coworkers completely believe me. They are expecting me to come dancing back for the fall semester. If only the doctors were so easy to convince.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAP 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now doing 100 doxyi; 125mg. azith; substituting acupuncture for pulsing.
[Doxyi, Azith, Biaxin and Flagyli] for rrmsi since October '05. Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,
Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.
She must have felt terribly alone. Perhaps, facing an altered life was unbearable or she had no one to help her. My heart aches for her family.
This site is a godsend. I hope it grows and grows and grows. Hope is a wonderful thing.
--
May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai.Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.
[Doxyi, Azith, Biaxin and Flagyli] for rrmsi since October '05. Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,
Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.
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
[Doxyi, Azith, Biaxin and Flagyli] for rrmsi since October '05. Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6
Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.
It is possible that this young woman knew what was in store for her, there is a chance that she was the kind of person who valued her physical ability to such an extent that the possibility of losing it meant an end to a life she was prepared to live, there could also have been relationship issues. Someone she loved would not be able to cope. If she was psychologically savvy, she would realise that should she become disabled she would probably loose all the things that she valued in her life.
Ella did, I think the only thing that saved Ella from doing the same thing initially was that she and Rich chose to be optimistic about her prospects. In the end that optimism about the progression of her disease was misplaced as she went from mild to significant disability in less than 6 years.
What saved her from suicide after her last relapse was the CAPi and the hope that she might be able to rebuild her life.
Everyone diagnosed with MS, especially young people should get mandatory counselling.
Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
I am with Michèle here, everyone who gets a diagnosis of MSi should receive immediate counselling. I watched my cousin, to whom I was very close, die from the progression of MS. Soon after that I was diagnosed myself and I had many thoughts about suicide. I believe that part of the reason I am still here is a dogged angry determination that this illness will not have me, but it certainly wasn't anything to do with the (non-existent) help from the medical profession.
So I am with Mac here, I try to spread the message of Cpni and this site whenever I see the need. Why should anybody have to go through the misery of this illness if there is hope in this treatment.
Robert - MS for 16yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli 7th pulse.
MSi for 18yrs. CAPi since Jul 07, NACi 2400mg, Doxyi 200mg daily, Azith 250 mg MWF, Flagyli for 4yrs.
Mac- I was struck speechless by this story. Such a waste. Of course, one never knows all the variables the press leaves out that would make different sense of a story. A year or so ago I posted the mortality figures for CFSi/ME patients, which were quite grim considering that it's not even considered an illness by many. In these a Cpni related diseasesi people often don't die of their diagnosed disease, but of "unrelated factors" like suicide and increased mortality due to other conditions--- which are of course Cpn related as we know. So, I do understand your strong stand on this although my own style is to let the information speak for itself. Your having made up the business cards is great!
CAPi for Cpn 11/04. Dxi: 25yrs CFS & FMSi. Currently: 300mg BIDi Roxithromycin, Bactrim DS 2x/day, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
An Itinerary in Light and Shadow...........
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.As I was sitting in the chair, my stylist in AZ doing my foils, I felt like I was punched in the stomach. Rhonda told me she was going to a funeral of a friend who died from a lengthy illness no one knew what to do with; she was about 40. It became quite clear to me then, that I must keep telling people about this site & for some, be insistent they visit here.
My father had a disabling hockey injury when he had the worst shoulder seperation specialists had ever seen. He fell into depression, though he seemed to be handling things, but he still, quite methodically, attempted suicide. By the grace of God he was not successful. Psychiatric counselling made him realize he placed value on himself by the things he did; so he was hockey, he was golf & without doing things, he was no use to anyone.
The suicides of people with illness like our MS, ME/CFIDSi etc is the reason I am adament about people here rushing this treatment & then suffer depression & suicidal thoughts. This is not something to be taken lightly.
So, to all of us & especially the new visitors, forget about jumping into this with both feet or head first with a "what the hell attitude"; we don't need a loss of life here on this site.
This is a site for hope & this word keeps us going. I thank God for sending me here & I pray for everyone here.
peace
r
CFIDSi/ME 26yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8
CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<
I wonder how many folks with chronic illnesses that are suffering from depression and anxiety that can lead to suicide are actually suffering from secondary porphyriai.
3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, 6/08 Zithi 250mg 1/wk, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I doNACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
In which case one should get themselves to GROUP THERAPY. According to my (ex) doctor, this is just the ticket for folks like us. We shouldn't try to get better, we should learn how to live with it (or die from it). grrr.
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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai.Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.
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 wasn't meaning to be funny. Sorry if I came across that way. I feel angry, outraged even, at this. We get cast aside too easily, it's a lot of work dealing with chronic illness, but we always need to know that there is hope, and that we are not alone.
--
May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai.Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.
yes, i have wondered too ...
M.E./CFSi 20 years, intermittent. Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07. First Flagyli pulse January 2008.
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
minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)
Janice,
It's not whether or not we feel the symptoms of porphyriai such as you did, but it's in the knowing where it's coming from that gives us hope and wisdom on how to handle them.
I believe it's said that 50% (or more) of the solution is found in identifying the problem!
Like you, I feel much more hopeful when I KNOW what my options are because I feel empowered even when I'm still sick or miserable.
3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, 6/08 Zithi 250mg 1/wk, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's
When I change what I believe I change what I doNACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons