First the Sweet -
My husband's latest MRI looked the best it has yet. Clear signs of large lesions healing, disappearance of smaller lesions, no signs of edema, etc...
I will try again some time to post the images so that folks can see them for themselves. All of the recent MRI's have been done on the same GE MRI machine by same tech and read by same neuroradiologist.
The other part of the Sweet has been how much functional return my husband has experienced since starting his particular version of CAPi.
Walking from abysmal to nearly normal. Balance from abysmal to now normal. Bladder/bowel control from abysmal to now mostly normal. Speech from 10 words now to 25% normal speech function - 30% on a good day. Memory from not knowing his name or mine to normal memory. No awareness of being in world to mostly understands what is going on around him. Sleeping 22 to 23 hours per day to sleeping a normal 8 hours. Severe sound sensitivity to now able to listen to music, radio, tv/surround sound, movie theatre.
The list of improvements over the past year has been down right astounding.
Now the Bitter -
At the end of August on a routine lab screen done by my husband's antibiotic doctor a problem was detected. A harrowing 3 weeks in the hospital and a new diagnosis - Acute Myelogenous Leukemia (AML) Secondary to Novantrone. Yup the drug they used last year before I found an antibiotic doctor and got my husband on CAP has given him cancer.
The prognosis for AML is abysmal.
After being home from the hospital for a couple of weeks my husband went back in to the hospital today to undergo very aggressive induction chemotherapy for the AML (a milder form of chemo had first been tried unsuccessfully).
The choice they gave us this AM was the aggressive chemo or fairly certain death in a few weeks. My husband chose to go for it and continue to fight. He was given a 25% chance of the chemo working and knocking him into remission, a 25% chance of the chemo killing him this week and a 50% chance it would just stunt the cancer.
Bitter - it's such an interesting word. It's hard for me not to feel bitter at the medical community right now - betrayed is perhaps a better description. It's hard to avoid feeling bitter at all that we have endured the past two years, the fight we have made and the progress that has ensued only to end up here.
Guess there is nothing else to say.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Daisy,im so VERY SORRY to
Daisy,im so VERY SORRY to hear this.
Really hope chemo can help him and beat the cancer.
You are both in my thougts and prayers,Maria
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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat
Daisy... Wow, my mouth
Daisy... Wow, my mouth dropped as I finished reading your post....you have every right to be angry! Oh my goodness... everything you've done and gone through to get your husband well to then have this.
You both have endured so much and have come so far. Your husband came back to you (mentally and physically), as you say not 100% but he is back and knows you are fighting with him and for him.
You both will be in my thoughts and prayers.
JeanneRoz
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JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's
Daisy- Here in Canada, it
Daisy- Here in Canada, it is Thanksgiving Day. I am thankful for many things; amongst these is my gradually returning health.
I logged on to the site after baking four pies, making pumpkin ice cream and corn muffins. Feeling triumphant over my accomplishments, I read your post. I am suddently humbled and saddened. I am feeling so blessed and this same day, some distance away, you are hurting. Your struggle and fight continues and brings a silver cloud with a dark and shadowy lining. My heart goes out to you; you shall be on my mind today. I send you my best wishes and may you find the courage to strive forward. May you find peace in this tough time and realize that you are a hero for many of us.
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Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.
DaisyI have been thinking
Daisy
I have been thinking about you a lot lately as I hadn't seen you on this site. Never did I expect that this was the reason. I am so sorry about this. You have been such a wonderful wife to your husband and and inspiration to us all here. I, for one, truly appreciate all that you do. It is incredible that one person has to go through so much. I wish you and your husband all the strength to fight this next battle. We all are here for you.
Lori
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Daisy- tears in my eyes as
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
Daisy, I'm so, so sorry to
Daisy,
I'm so, so sorry to read this bitter part. Although a different set of circumstances, I've recently emailed and have talked with several folks that I met while on the MPi. While they feel the MP has lengthened their lives and saved them from death of sarcoidosis mainly, they are now struggling with cancers and other illnesses due what we think might be a result of the meds and D deprivation.
I only mention that because I'm wondering if it would help your hubby to use some of the other therapies (maybe after, maybe during) along with the chemo to help him beat this thing. For example, Vit D, iodine.
Another man I know has an 80 yr old dad that's put his leukemia into remission using a rife machine. The man is really very healthy, even for MY age.
As long as you and your hubby are willing to fight, throw everything you've got at it! I'm sure I can speak for the others when I say WE will all be praying for both of you.
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NACi 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
Daisy, sometimes life is
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
WE hope.
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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
Daisy,Your post brought me
Daisy,
Your post brought me to my knees today. First to pray and to thank god of all the times you have helped one of us with a smile. You are a strong spirit. Look around, wherever you are,we are behind you all the way!
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RRMSi since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax
FlagyliCopaxone,Avonex,Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't waDear Daisy, tears are in my
Dear Daisy, tears are in my eyes as well. Its just not fair............Sarah
An Itinerary in Light and Shadow
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Daisy, Words escape me for
Daisy,
Words escape me for the moment, however, I am sure and pray that you will be successful together, in fighting this never ending scourge. It's not fair!!!!!! Please fight on........................ We are thinking of you with vast amts. of hope. You will win the war!
Loulou
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diagnosed MSi Jan.2000 , chronic neurological lyme disease Nov.2002.
doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,
If the prognosis for AML is
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg.
Metroi 400mg.Tinii 06/10 Pulses #36...I can because I think I can.Daisy-"Essiac" please
Daisy-"Essiac" please research. See the UK charity "The Clouds Trust" based at:-http://www.cloudstrust.org/
Please stay away from sites in the US that sell this product as to make it into a tea, which is how it works, you must follow the instructions very carefully as set out in the Clouds Trust. There are many scam companies in the US selling this.
IMPORTANT - Also research the Canadian nurse Rene Caisse who discovered the herb.
I am not saying that this is the answer for you, but 6 or 7 years ago, Paula who at that time was a Reiki healer, told a client of hers who's 64 year old Mother had cancer, about a herb called Essiac she had knew about. This woman had already previously had breast cancer that had gone into remission after Chemo, but this time the cancer had spread to both her breasts, her spine, and even her liver Paula thinks. The son, was given the herb Essiac to make into a tea that Paula had given him from the Clouds Trust UK Charity (really as a last resort as her cancer was so far gone).
A month or two out of the blue after Paula had given the Essiac, the son rang Paula to say that all traces of cancer had gone from the Mother's body. The doctors had said that they had never seen anything like this in their lives. Whilst taking the Essiac, the Mother continued to take her conventional Chemotherapy.
Once again I am not saying that this is your answer Daisy, but it is worth a try.
Paula says she can give me the UK telephone number of the son, who I am sure would be able to speak to you if you need.
My thought are with you and your hubby Daisy.
Mark
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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04. CPNi dxi.Apr07. Borrelia dx Sept08.
Samento 15 drps daily July07. 200mg Doxyi Jan08. 300mg Roxy Apr08Stopped abxi Nov/Dec08. Building up on Supps again.Daisy, a great book to look
Daisy, a great book to look into relating to Essiac is called :-
Essiac by Sheila Snow & Mali Klein.
Canadian Sheila Snow knew Rene Caisse personally and was given access to her papers
Mali Klein is the founder of the charity called "Clouds Trust" based in Hampshire, England and is currently conducting research into Essiac.
Take care,
Mark
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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04. CPNi dxi.Apr07. Borrelia dx Sept08.
Samento 15 drps daily July07. 200mg Doxyi Jan08. 300mg Roxy Apr08Stopped abxi Nov/Dec08. Building up on Supps again.Daisy, the two of you have
Daisy, the two of you have been through so mcuh -- it's not fair! My first reaction to the bitter was a series of "oh my Gods" but by the time I scrolled down I too was in tears.
BUT -- he has beaten so many odds and done the "impossible". By comparison, 25% is pretty good. My fingers, toes and heart are crossed for you.
Nancy
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe Lyme. Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private m.d. out-of-plan. Wheldon CAPi 3/2/07 - Now (3/10) doing 100 doxyi; 125mg. azith; pulsing tin
I was expecting that the
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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue-almost resolved, severe hormonal inbalance-resolved, right arm neuropathy-getting better. cpni, myco, EBVi, CMV. Capi began in 6/07. NACi 3000mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, tinii pulses
God help us all. I feel
God help us all. I feel so humbled by all of you on this site. I have suffered alone for so many years and to read all the posts and realize the scope of all the suffering but also all the love and care for each other, makes me cry.
Dear Daisy - I am praying for a miracle for your husband and strength and hope for both of you. Miracles happen. I would not have made it this far without all the prayers for me throughout the years.
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FMSi/CFS 1995. tinnitusi, ibsi, sinusitis, EBVi, NACi 2400mg, valtrex, cortef, armour, doxy, clarithromycin, tinii, vita c 5 - 10,000 daily
Daisy, I am so sorry. I
Daisy,
I am so sorry. I know how devastating this diagnosis must be. Cancer, like so many other diseasesi, is completely unfair. Actually it's so much more than unfair, and it seems all the more cruel in you and your husband's case, given your battle with Balo's.
I'm hoping that the aggressive chemo is not too difficult and provides good results for you all, but hang in there. You and your husband are in my thoughts.
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Treatment for Rosaceai
Am hoping for you both,
Am hoping for you both, Daisy. Whatever the results, your courage and perseverance will continue to carry you through!
--Minai
Daisy,you and your husband
Daisy,
you and your husband are in my thoughts and prayers. If ever there was a time I was rooting for someone other than myself then this is it.
garcia.
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Hunter: Don't think - experiment
Dear Daisy, I read your
Dear Daisy, I read your post last night and needed some time to sit with my response to you. Today your husband is going for the the best 25% possible. Seeing his photos over time and stay close to your posts over the past year and a half, I have a sense of how strong his constitution is. He has been able to take and use huge amounts of meds to his advantage. Such amazing progress with the Balio's. I would not dipute any of the condolences printed above. However today is the day that I am seeing him strong and whole taking in the cure. He is an a guy who takes the odds to the postive in my humble opinion.
I have missed you these past weeks and wondered where you have been focusing. My sense was that it was very good or very challenging. I was hoping your absense was for a long needed vacation after the ABXi MD appt. as being the answer.
I am holding him in my intention seeing him in the light of his wholeness and in the moment.
May the Source and the best odds be with him. Louise
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
i am speachless.....i am so
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doxy200, azith250, NACi 2400, Metroi 1250(once a month), supplementsi, vitaminsi.
Daisy, what a blow! A
Daisy, what a blow! A double whammy! I know that life can be unfair and that there is no explanation for this kind event, all I can say that is those that have the courgage to cope and continue to think, function and be creative in these times of trouble have a better chance of succeeding than those who give up.
You have already proved that you can overcome great difficulties and I have every hope that you will prevail in this situation too.
When people hesitate on the brink of a CAPi I will tell them about your husband's experience with recognised treatment for his condition and ask them why they should be frightened of ABXi.
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Daisy, I felt like the
Daisy,
I felt like the floor dropped when I read your last section. Words can't possibly express the thing; I am so, SO sorry. I am sending my best thoughts your way.
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
This is heartbreaking. Our
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minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)
Dear Daisy,it`s so
Dear Daisy,
it`s so unfair,you and your husband are in my thoughts,everybody here is praying for you,I send you a friendly embrace.
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sphinx / On Wheldon CAPi ,14 th May 2008, currently/ Doxy 200 ,ACC 2400 plus supplementsi ,RRMSi since 92, SPMSi 06, EDSS 7 ,Azi 3 times a week, 21 Tinii pulses
To All - I wish I could hug
To All - I wish I could hug each and every one of you personally and say thank you. I have been so blown away by the support, encouragement and kindness here. It has touched my heart and bolstered my spirts in ways you might not imagine and in ways badly needed. Thank you, I am humbled.
Reenie - I am looking into Rife. Had actually bought a book about it for lyme disease - will now look at it for cancer too.
Mark - I am learning about the Essaic - I actually have some and have drank it myself in past but perhaps I need to learn more Thanks for your kind suggestions and all the info.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Daisy, the "Good Book"
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Lived with MSi since 1991. Completed 16 months of full CAPi plus supplementsi. Currently in full remission. Not on any antiobiotics anymore but taking all supplementsi incl NACi.
Daisy,Stunned. All I can
Daisy,
Stunned. All I can do is echo the sentriments of others here. You and your husband have been my heroes over these past many months. Looking at the amazing recovery via your updates and the astonishing improvements in his mri's has humbled me and yet has strengthened my resolve for hope and cure. Having just returned from spending 22 days in a rehab hospital myself, I saw several people there who were clearly facing challenges much greater than mine. I thought of what you two have endured and was reminded of your courage. How can yet another insult happen to his body? It is beyond unfair.
In my own way I usually like to look for the good that comes from difficult situations. For my unpleasant 22 day hospital stay, the silver lining came in the form of seven nurses, all recently diagnosed with msi who wanted to know more about cpnhelp.org. From my hospital bed I was happy to tell them all about it.
In your situation, I am planning on your husband's complete recovery and the goodness of it coming in the form of his hope and courage rubbing off on the rest of us here first...then over the whole world. Hope can be hard to come by these days. It will be good for all.
You are both in my thoughts and prayers.
-kk2
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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.
Like all those posting, I
Like all those posting, I am sooo very sad for you both. God IS with you and will give you the strength you both need -- I can personally attest to this. Bless you
Mary Ann
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Mary Ann
SPMSi. Dxi 1991. EDSSi
6.0, 6.5,6.9; Weldon CAPi. started 3/08. All supps, NACi, Doxyi, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition