MediTest
Submitted by Daisy on Mon, 2008-10-13 15:46

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 CAP.  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. 

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

Cpn since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid.All classic cpn,porphyria and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NAC, high vitamin D3. CAP for over 3 years. Back to work and life

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

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

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.

Lived with MS since 1991. Completed 16 months of full CAP plus supplements. Currently in full remission. Not on any antiobiotics anymore but taking all supplements incl NAC.

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 

 Started Vanderbilt protocol 1/9/08  Rifampin once a day, b12 injection monthly , vitamin D 50,000 IU weekly

Daisy- tears in my eyes as I read your post. Heroism and heartbreak both. May every bit of the recovery you have won him go into this fight. Thanks for letting us know.

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 MP.  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. 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, ValcyteSupplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons Don't believe everything you think!  

Daisy, sometimes life is not fair to those we love and admire. And you and your husband have never had such a group around you - no one has. You have been the most revered and respected stubborn leader here. I hope....

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

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!

RRMS since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagyl Copaxone, Avonex, Novantrone, Provigil, 5gm NAC, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5.  Can't wa

Dear Daisy, tears are in my eyes as well.  Its just not fair............Sarah

An Itinerary in Light and Shadow

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.

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

diagnosed MS Jan.2000 ,  chronic neurological lyme disease Nov.2002.doxy 100 mg. 1BID. roxy.150 mg.? BID,adding rifampin soon, pulsed tini. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDN),NAC, nystatin, major wheldon supplemrnts daily,

If the prognosis for AML is abysmal, so was the prognosis for Balo's and look what you accomplished Daisy. If anyone can cheat the odds then it's you and your husband. I hope too...

speedbird

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

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPN dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxy Jan08.  300mg Roxy Apr08 Stopped abx Nov/Dec08. Building up on Supps again.

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

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPN dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxy Jan08.  300mg Roxy Apr08 Stopped abx Nov/Dec08. Building up on Supps again.

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 

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

I was expecting that the bitter was the porphoyria monster, not that your husband has cancer.  Reading that took my breath away. You are in my thoughts and prayers.  please come back and keep us posted as much as you can.

Mphs, TN. CFS, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpn, myco, EBV, CMV, HHV-6. Cap began in 6/07. NAC 2400mg, mino 100mg bid, biaxin 500mg bid. cytomel, flagyl bid continuously.

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.

FMS/CFS 1995. tinnitus, ibs, sinusitis, EBV, NAC 2400mg, valtrex, cortef, armour, doxy, biaxin, tini, vita c 5 - 10,000 daily 

Red

Daisy,

I am so sorry.   I know how devastating this diagnosis must be.   Cancer, like so many other diseases, 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.  

 

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

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 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. 

Hunter: Don't think - experiment

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 ABX 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  

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

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 CAP I will tell them about your husband's experience with recognised treatment for his condition and ask them why they should be frightened of ABX.

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

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.

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

This is heartbreaking. Our prayers are with you.

minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitis (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

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.

 

 Wheldon CAP May 2008,   52  Tini pulses - stopped Nov.2013- Buhner´s protocol Dec. 2013 till  June 2014 - cpn free Oct. 2014

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.

 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Daisy, the "Good Book" instructs us to bear one another's burdens. We cannot bear your burden, but we extend as much support as the miles allow. Please accept our very best wishes and we send you corporate positive energy, and we hope that it lightens your personal burden in some small way.

Lived with MS since 1991. Completed 16 months of full CAP plus supplements. Currently in full remission. Not on any antiobiotics anymore but taking all supplements incl NAC.

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 ms 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

Wheldon Protocol for rrms since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGG's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

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

Mary AnnSPMS. Dx 1991. EDSS 6.0, 6.5, 6.9; Weldon CAP. started 3/08.  All supps, NAC, Doxy, Azrith, 13 flagy pulses, 5th tini pulse 11/13/09, 19 total pulses, no improvements, worsening condition 

Daisy,

In the midst of your incredibly brave struggle, I have yet another suggestion to add - Low Dose Naltrexone - LDN. I really have no idea of its application for leukemia, but it is not a bitter pill - it is a very easy red capsule from Skip's Pharmacy 561-218-0111. 4.5mg at bedtime. You probably know that I have cancer . I take this every night, with no side effects, except VERY slight sleep disturbance. It is used to extend the lives of stages three and four cancer patients with great success.

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

Dear Daisy,

As everyone here has come together to pray, send good thoughts, and warm friendly hugs ... both your longtime good friends and recent fans such as me. I would like to add mine for you and your husband. When I read "the sweet" I felt such joy for you and your husband. It seems you have battled hard & to now have the rug pulled from under you seems so cruel. I did have to stop and cry for you both as it seems so unfair to me as others have said. But then I began thinking that our journey in life has never been promised to be fair. We must make the most of what is handed to us. You and your husband are inspiring to have the courage & will to fight again. I am praying and rooting for your husband to overcome the cancer. Praying you both have what it takes each day to face this life challenge. You, your husband, along with the group here are amazing people. I feel privileged to be among you. I am humbled... Miying

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

dear sweet Daisy & husband,

like your other friends posted before me, I am crying at the news & touched by the support we have.  I am sorry I am late in, dealing with my own little battles here.

only our God King knows the reason why, I trust it is a very good one.  You have touched & taught so many around you on your journey to husband wellness.  You both are blessed with great strength.  I am so thankful for this.  Lean on him, he is there, with you both in this full on, no holds barred battle.

Sometimes I can't even spit when I think about some of the crap the pharma's push minimizing the side effects collateral damage.

Miracles are happening all around us.  A husband/wife couple- friends recently experienced a huge one.  She has had FMS & a very bad accident that left her body wracked with pain from injury as well.  She only walked small amounts with a cane & used a scooter to get around.  She had to take lots of pain killers to just manage & she couldn't work at all.  The spirit urged them to sit in prayer & so they did.  The next morning, she had no pain, no cane, no scooter needed, not to mention- no pain killers.  God is amazing & does things in his time with the much bigger plan in his sight.

I pray daily for everyone here & today, specially, for you both.  God's will be done.  God's speed courageous Daisy & husband.

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<

Home from long day at hospital.

White blood cell count down from 70k, to 46k, to 6k this AM.  So far my husband is responding to the chemo.  He has completed the first 48 hours and has 72 more to go  - then we wait.  Things still very dicey - but at least he is clearly responding to the multi drug chemo cocktail.

i appreciate you all acting as such a wonderful and loving cheering section !

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

That's good news, Daisy. Keep it coming (when you have a spare minute to take a breath, that is).  Image removed.

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, you and your husband will be on my prayer list.  God can heal him.  May God bless the both of you during this terrible ordeal.

 

Gisela

CFS and IBS/Candidiasis since 2000, 100mg once daily doxy since 8/21/08, 250mg azithro MWF since 10/3/08, flagyl pulses, vit D3

Daisy, I remember my mom used to sing a little song...

Daisy Daisy,
Give me your answer do!
I'm half crazy,
All for the love of you!
It won't be a stylish marriage,
I can't afford a carriage,
But you'll look sweet on the seat
Of a bicycle built for two !

Well, your bicycle built for two has had some serious flat tires, bumps and road blocks. I can't think of a better analogy in this case. Gotta stop and visit the service station; you have had a low tire, and need some air to lift you up. Look out ahead, hit the breaks and hold on, a huge bump looms. Now you need to take a look at the road map; must plot a new course, as the one you had planned is under serious construction. I picture you Daisy, pedaling like mad, with your husband holding on for dear life. But you still are sweet on the seat, of that bicycle built for two.

Lived with MS since 1991. Completed 16 months of full CAP plus supplements. Currently in full remission. Not on any antiobiotics anymore but taking all supplements incl NAC.

Tody - This made me smile!  Thank you so much !

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Dear Daisy,

I'd like to add my cheers for you and your husband in getting through this.  All good thoughts to you both.

Best wishes,

Marysia

I sigh relief at the news of husband hanging in & holding on. 

I see you, pedalling like mad, with the wind in your face shielding your lover on that bike for 2.

May you be blessed even more than you already are.

Me & my husband are praying for you both.

a nice hot bath for you comes to mind, with a nice glass of the wine of your choosing.

peace

r

 

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<

Daisy, I take allicin to treat my cpninfection so I read a lot about allicin.

Its very good for many things. I did read that there are some cancerpatients in Norway that dramatically improved ther T-cell counts with allicin.

Hope it can help,just one thing if you or anyone here try it be carefull and only start with one AllicinMax because it can be very strong dieoffs when bacteria is killed. So doses must be built up over time. We can not just start with the recommended doses because of the dieoffs from cpn.

http://www.allicinfacts.com/allicin03f.htm

 Best Wishes from Maria

Cpn since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid.All classic cpn,porphyria and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NAC, high vitamin D3. CAP for over 3 years. Back to work and life

Daisy, 

You are wonderful. You and your dear husband give us hope. May we return it to you as strength. 

Keep going!

Nancy 

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 3/2/07 Stopped 12/12; resumed 12/13

Thank you again for all of the kindness and support!  I am so overwhelmed by the encouragement, good thoughts, wishes and prayers !

My husband finished the induction chemo on Sunday night.  So far so good.  His WBC's have fallen from 70k to 700.  They should continue to fall.  Over the past week he has battled infections, extremely high fevers, endotoxin shock and a bevy of other challenges. 

Now we wait, his blood count should continue to fall.  The big risk now is infection.  I am now the Queen of Lysol and HANDWASHING.  Over the next couple of weeks his blood counts should ideally return to normal and he end up in remission.  Won't know for several weeks.

As for me, I am worn out on all fronts but hanging in there having found deeper levels of tenacity and perserverance than I ever knew I had. 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

Red

Hang in there Daisy!   We're all pulling for you both.

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

So good to hear what is happening. Thanks for posting Daisy. Sending all my best thoughts and prayers. You both can be very proud of doing your darndest. You are amazing people! 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Daisey, I do so believe the Source is with us on this journey. I do hope that you new occupation as Master Cleaner will allow you to update us occasionally.  You are both master of the Psychology of Winning!

Sending you intentions for strength and hope,  Louise

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

Daisy, it is such good news that there is hope.  Our thoughts and prayers are with the two of you all the time.  Keep on fighting,  you deserve something back for all the effort that you've put in.

MS for 20yrs. CAP since Jul 07, NAC 2400mg, Doxy 200mg daily, Azith 250 mg MWF, Flagyl for 4yrs.

Dear Friend,  You have a soul full of super-glue and grit, thank God.  I'm still praying for that miracle from God, and now it even sounds possible.  Hang on sister!

Bless you both, Joyce

 

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. 

Daisy,

I don't come here very often, I am shocked to read of this latest blow you have both been dealt. But if anybody can get through this YOU can.

You are among the most stubborn (in the good sense of the word), caring, open yet methodical person I have ever met. In fact I often think of how you've been actively supporting your husband all this time, inventing solutions for him, never giving up, and not falling apart yourself.

You ARE amazing!

Both my husband and myself are ill (Lyme + other things) and I think I feel worse when HE is further down than I am. I think I can keep my spirits up better when I'm the one who's not doing well than the other way round.

Since I read your story, when this happens, I try and think of you both and imagine how YOU would react, and it stops me from feeling too sorry for myself.

People who know me from Lyme groups will know that I am not usually very good with expressing feelings but I really feel for you both. Good luck with the next few weeks and with keeping the bugs away from your husband.

We also do our strange routines around here, because I catch every bug that goes round in the winter.

I'll tell you what we've found works: whoever goes out to shops

-takes shoes off before entering the house

-tries to use elbows or disposable paper or tissue for all door handles or elevator buttons etc

-keeps as far away from people as possible in lines at the supermarket

-avoids children as they are often sniffling and coughing

-never rubs face (nose, mouth eyes) with hands

-shops in the middle of the day when shops are nearly empty

-then of course washes hands immediately (we have two bathrooms but we still use toilet paper to turn taps on and off).

We should also wipe down the shopping with some disinfectant before putting it away but we don't always do it.

If we have to use public toilets, we use toilet paper to touch anything in there (especially doorhandles, flushing button, taps etc)

-AVOID DOCTOR'S SURGERIES from Oct to April, and in hospitals touch as little as possible

-In France avoiding kissing people or shaking hands is pretty difficult, as even people you don't know want to kiss you on both cheeks the minute you meet. I don't care I just appear rude but I just make sure my hands are full with a coat or something and I don't hold my cheek out for it to be kissed.

I also make sure all my friends know not to come and visit if they even suspect they might be coming down with or recovering from a virus.

We have been doing this really stricly for 2 years and, (touch wood), I haven't caught anything since we started.

My husband has to travel for work, and after a long transatlantic flight he often returns with a budding cold/'flu (despite precautions).

So when he comes home he has to sleep in what we call the "quarantine room" for up to 4 days (usually he is totally jet-lagged so he sleeps at odd hours anyway.

Whenever he's had the 'flu (he did get it 2 winters ago), we use surgical masks for him, and he is to place all his paper hankies in a closed plastic bag he will then dispose of when I am not around.

We also use paper towels for door handles but we try mainly to each keep to different parts of the flat. I bring him his food but he doesn't go to the kitchen unless I'm not around etc etc.

I know some people will think this is extreme but I used to get so ILL with any respiratory virus, the last few times I thought I was not going to make it through the other end.

I am quite sure you have worked out your own routine, but I thought I'd describe ours, in case it helps others here who also get extremely ill with respiratory viruses during the winter season.

Hang in there, both of you

 Nelly (Paris-France)

Nelly (France-neuroLyme and ????)

Daisy,
I just read your post as I've been off the site for some time.

How many times can the word sorry be said. I try to tell my family this daily and myself between the mental/physical anguish. I felt I had/have such a rough time and can only imagine your worlds together. For that, my heart is clenched and I have no words other than.. sorry.....and I am saddened to the core for what life allows.

I recall speaking with you in the beginning of your husbands treatment. You read my story 12+ times as you saw many similarities of his symptoms to mine. You said this helped you make the decision to begin the CAP, etc., and I felt immense satisfaction being able to help where I could based on my experience. It turned the dark into light.... and I wish I could help, again. Wishing you the best in your drive and fight and I carry awe deep inside having knowledge of both your love, strengths and support. A true heroine and a true hero....

We wish you well.
Karl and Alyson

Uncommon inner strength must defy gravity...hanging on here....You all have the ability to do it!Diagnosed MS, 23+lesions, 5/4/06.  CPN past and new chronic infections.  Lyme suspicious titers and Babesiosis found.  Started CAP 6/06