An Old-fashioned Pulse

Six days after surgery for double mastectomy in Jan, 08, I "did a pulse", thinking since I would be out of action for a while, I wouldn't waste time doing nothing. Boy, did I get the pot stirred! I think all the flagyli went straight to the surgical site - and I understand that cpni bugs are found in cancer cells. I don't know if this is common, but maybe the experts can comment. In my last blog I mentioned that I am the third known case on our site of this kind of cancer (DCIS or a close cousin), and have since learned of at least three other stage four cancer cases of close friends or relatives of members. It took a very long time to recover from that number 49 pulse - about two months - after which I could again lift the buckets, bags, and partial bales (I still am not strong enough to lift a whole bale of hay, which drives me crazy). What calmed me down enough to get through tbe recovery period was that friends said my body had been through big trauma. Ok. Then as always happens with us here, it was time for - guess what - another pulse! As the Marines say - Hoo-ahh! How did I know it was time for flagyl? It wasn't just the calendar. It took about a week to build up, though it was probably longer. It was a very old signal which had taken a year and a half for me to learn to recognize. This time is was very muted, and I woke up one morning knowing it was the new, improved version of my legs screaming for flagyl. But this time they were saying "Please, can I have some more?", just like Oliver Twist. I said fine. Another post-op episode: I was put on Arimidex, a second-generation tamoxifen and was to take it for five years. My cancer feeds on estrogen, and this drug mops up estrogen. After one month, I spent the afternoon going systematically and seriously through ways to kill myself, after a lifetime of never having had a suicidal thought. It also was destroying my right knee. I realized that this was not a drug that would benefit me in any way and stopped. Now, after six weeks or so without it, my thoughts are back to normal and my knee is better but by no means back to normal. It seems like months or years since I had all the old standard symptoms, but here they were: brain fog and slow, slow thought, joint aches that flitted from joint to joint - nothing like the entrenched "I'm not leaving til my job is done" aches of pulses past, fatigue (this time curable with rest!), ennui, crankiness (where did THAT remark come from?), staggery gait (still have it but getting better finally). In other words, all these and more returned, just like the old days. But like the much brighter future that we saw from the past, I am on a slightly higher plane than I have been for some years. Since I have the floor (and any dear reader can close the curtain at any moment) I am going to have my share of drivel and gossip. (1) From the grapevine: My neurologist is leaving town and won't say where he is going. (2) When I went for my post-op physical, my doctor paid me what I think of as a great compliment: he said I was John Wayne in a woman's body. (3) I am working on getting LDN (low dose Naltrexone) - it is not just for MS patients or cancer patients, but for both. I don't want to wait till I am stage 4. Since I have both, I should be on it, I think. My doctor won't do it (?!) - he thinks I don't need anything because "they got it all" - but Richard is trying to get it for me. (4) In addition to the "catches" in my chest as a teenager, I remembered the next day that in the late 70s I pushed my son's car twice in one week when his battery was dead. Both times my body went numb and I fell down. I can still make my body numb in exactly the same way. There is a lesion in my neck in the spot that gets touched when I put my head down - as though I were pushing a car. So ....is this another tiny piece that says there may be nothing really that is PPMSi when you had pneumonia at 10? I have had iritis for twenty-two years and have now fourteen prisms in my glasses, carpal tunnel surgery in both wrists - though I was a pianist from age four, a violinist till I retired, and did heavy carpentry for thirteen years, a propensity for long-lasting, deep coughs after every cold - which is now gone. Obviously I had things going on for decades, but no one knows the big picture yet. I really think we are on to something. Have I said that before? (5) Back to the stupidity to which we were subjected last week on "another site": the person wrote that anyone whose MRI gets better on abxi never had MS at all. Does this means that if the bullet that kills goes through that you were not shot?

Comments

Rica, you are the

Rica, you are the quintessential frontier woman. My doc suggested I take Iodoral and I am so glad I do. It is suggested that it is a major cancer fighter--especially for breast cancer. Here's link: http://www.breastcancerchoices.org/iodine.html< Also check Dr. Brownstein's site: http://www.drbrownstein.com/< Iodine is soooo much better than blocking all the estrogens in your body with toxic drugs. I hope you can look into it. It is also effective against bacterial and viral agents. All my best to you, Raven CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6

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

Rica, It's heartwarming to

Rica, It's heartwarming to read about your recovery.  I'm glad you are feeling stronger.  I was wondering how your legs were screaming for Flagyli.  Is there something like a trigger that you feel?

How can a doctor up and leave without a proper transition to a new doctor?  I think it goes, "If the doctor you had goes away, then you really never had any illness".

The arimidex stuff sounds frightening.  Sounds like yet another reason to empower ourselves.

You mentioned how you had some revisits of old symptoms, how intense was it and did it feel like taking steps back?  Ken  

In pursuit of ABX<

Don't Allow What You Know To Get In The Way Of What Might Be

Rica, I have been on LDN

Rica, I have been on LDNi for 4 years. I look at it as being my "insurance". I think it is a great idea to get on it. I could only tolerate 1mg until this last fall when kk2 inspired me to increase it. I went to 2mg without a problem. I used to get soo spastic I could not move over the 1 mg dose. Skip's pharmacy in FL has a lot of info on it. Are you going to start at 4.5 mg? Keep trucking. I hope to talk with you soon. kc dxi msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On doxyi 200mg/day azith 250 mwf and NACi 700mg. ldn 2.0mg.
dxi msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

Rica congratulations on

Rica congratulations on doing so well and on just being so amazing.  I agree with Jim that you should have the floor for as long as you like - it's always such a pleasure to read your posts because you're so positive, you never whinge or whine and you say such lovely things to everyone.

Smile

 

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Elinor ..... from England  on CAPi, doxyi/roxi/tini  for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Rica, maybe we should call

Rica, maybe we should call you The Duchess...   It was great hearing about your experiences after the operation and your gradual recovery from that trauma.   It would make sense of course for your operation site to be affected by the ABXi, as there is much activity going on at a healing site.  

Your example continues to be a blue print for the rest of us, both in your attitude and in the course of your recovery.   When Ella gets discouraged I always hold you up as an example of the process she is having to go through.

Multiple Sclerosis = multiple scars, a descriptive term, as Nancy says, does not explain causes and processes, furthermore there is nothing wrong with the immunei system doing what it is designed to do, it's just that people who are not able to see the disease have got to blame something for the resulting malfunction...

Michèle (UK) GFAi: Wheldon CAPi 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.

Thank you, Daisy, thank you.

Thank you, Daisy, thank you. (bow left, bow right, bow center)

PPMSi-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuroi. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 4 pulses. Rockville,Md. Loo

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

Rica, you are far more

Rica, you are far more vibrant (indeed, alive) than John Wayne ever was. And yes, Wiggy, none of us have ever had MSi. MS is an auto-immunei disease -- didn't you know that? It manifests itself in certain definite symptoms, mostly in women and its onset is from age 20-40. It bears no relation whatsoever to any symptoms that we may imagine to be connected like chronic bronchitis or pneumonia or amblyopia or--fill in the blank. Just about any neurologist will tell you this. And since those of us who, like Rica, have ppmsi, are obviously different from the aforementioned model: different symptoms, age group, sex distribution and -- here's the clincher -- none of the MS meds do a thing for us, they won't even let us participate in studies because we throw off their statistical analyses. So we absolutely do not have MS -- not the REAL thing! We have "de-myelinating disease." Standard of treatment: "Do nothing."

MS is a meaningless term used to describe a bunch of unexplained symptoms just as is schizophrenia. It describes the sites of injury, not the disease. It's as valid as saying, "that fall had nothing to do with the arm bone breaking; the body just got tired of the arm bone and therefore broke it."

PPMS-misdiagnosed 2001-diagnosed 2006. Minocycline 7 mos.- resulting bronchitis 5 months. Talked Hopkins neuro. into: HRT (estriol and progesterone as neural protectant re Voskuhl,UCLA).Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 4 pulses. Rockville,Md. Loo

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

"MSi is a meaningless term

"MSi is a meaningless term used to describe a bunch of unexplained symptoms "

Nancy - Right on Sister! 

Personally, I'll believe in Santa Claus and the Easter Bunny again before I believe in the term "autoimmune disease". 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Rica -  Your inner steel

Rica - 

Your inner steel vibrates through the internet today and some how strengthens all of us.   

I admire your inner fortitude greatly. 

Everyone of us on this planet of a certain age have likely had thoughts of ending it all - and in much less difficult circumstances than yours ...

To me you typify what was meant by

"When you are going through hell, just keep going..." Winston Churchill 

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

Daisy - Husband on CAPi 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MSi drugs killed him.

Daisy on her own CAP 11/2012. 

Rica, I am still planning

Rica, I am still planning on sending you the LDNi info. - hopefully, I will get to it tomorrow. A response to that person on the other site -perhaps non of us have MSi? On Wheldon protocol for MS since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDN 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tinii pulses,100 mg diflucan, 4.5 ldni; Wheldon protocol for MSi April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Gads Rica! You can take the

Gads Rica! You can take the floor for as long as you need: you certainly earned it! Yes, I do think this is all linked, and Cpni is in there right in the middle of it. There probably is also a genetic and even environmental connection as well, but the inflammationi from Cpn is likely the factor that pushes these cell aberrations over the edge. Your attitude is pretty amazing to me. I whine much more as I'm grasping the nettle! I have a whole bunch of mixed metaphors running around in my head from reading your post, one of them is that you certainly do bite the bullet that goes through you! I think you know what I mean anyway. Into the breach...

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 250mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, 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

Todybear, your story will

Todybear, your story will be interwoven with those already here. We are just a few steps in front of you. You are one of the most fortunate because you have a dear friend who wants you to do it. I say once again, my travels would have taken a very different course without Richard.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

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

 When one hangs around in

 When one hangs around in here long enough, one starts to learn about the journey that members have been on. I have read alot of threads and continue to read more of them on a daily basis. Katman, I did not know that you have been through so much. It's interesting how listening to someones recollection of their personal struggles can kick you into gratitude rather than the existing self pity. Katman,  you have inspired me today to continue my fight and put the next foot infront of the other. I took my requirements to my doctor today as he told me he would prescribe Dr. Wheldon's protocol for me and for me, that is a big step.(I normally like to hum and haw for days before backing out of commitments.) My husband is on a trip and left me a list of things to do as sometimes I get so nonchalant these days. The last thing on the list is "GET ON THOSE DRUGS"! He wrote on that item  that if I do only that this week, there is no need to get to all the other tasks. Doesn't that sound like a little child phsycology  there? Bless you all for your honesty, without it, I think we would feel alone in the fight.

Supplementsi & NACi, starting CAPi soon.

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.

Rica, how wonderful you

Rica, how wonderful you are!  You truly have "true Grit", a humble fighting spirit & a love for your hobby.  It has been many years since I chucked bales, you will be up to speed soon enough. You know what, if you have to pull out your pocket knife & cut the strings & move it in 2 segments, I realize this is a larger volume..sobeit.

I have noticed that "you know when it is time to flagyli"; I can now feel it coming on, have just travelled yesterday.

I will throw in my support for the LDNi for your situation; you do what you have to do.  It is logical & better safe than sorry.  Prevention is far better, particularly at this time.  If I were in your position & able to, I would increase my intake of things like circumin - anti cancerous supplementsi.

People rarely talk about suicidal thoughts.  I have been there, just over a year ago actually; before this site discovery.  I prayed, went to a psychologist, just to talk & all that helped me a great deal.  CPni is a deadly bacteria as we know, it can show up anywhere in any one of us.

About the "other site", well, what is that saying "stupid is as stupid does".  We know there are alot of people out there sick with their head in the sand & their butts sticking up in the air.  This position leaves human beans....well.....vulnerable; it is far more appropriate for an ostrich.

Thanks for your post, it is great hearing from you.  Your experience & position is one of honour imhoi.

You are the best!  I mean this from the bottom of my heart my friend. 

My prayers are with you all.

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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<

Cute, garcia Actually I

Cute, garcia Actually I think you are right. But Marion is a nice name like Leslie - one name fits all. As for the LDNi - thanks. One of us on here, Ex Racer, gets his from the compounding pharmacy in FL and it is VERY reasonable. We have the summer show season and classification coming up soon and as interesting as it would be to do my own, I will take the easy way.

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

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

Hi Rica, about the LDN - I

Hi Rica,
about the LDNi - I bypassed the need for a doc by making my own. Just need Naltrexone and a mortar & pestle. Much cheaper that way too. (not that I am advocating that anyone else does this).

P.S. I thought John Wayne was a woman. Wasn't his real name "Marion" or something?

CFSi. Started CAPi 03-07. Currently: Roxi 600mg + INHi 600mg + Tinii 1000mg. 10 Pulses done. Sauna every other day. D 7200IU

Hunter: Don't think - experiment

Joyce, you are like Daisy -

Joyce, you are like Daisy - your senses of humor shine through even during the worst that life can throw, splatter, or drop. Thanks

 

Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 50 pulses NC USA

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

Rica,  (<I don't believe

Rica,  (<I don't believe you ever had breasts or cancer.  Things would be pretty much as they are now had you never had them, so you must never have had them.>)  Seriously, when you find a doc to prescribe the LDNi, be persnickety about how it's prepared.  Lord have mercy, you're a gritty character.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

I loved the comments of the

I loved the comments of the person on the "other site" who said that if you cure yourself of MSi you never had it, she also said she was open-minded. What a great way to make sure that your beliefs are never in question!

Rica, you really seem to be going through the wringer... you are a great inspiration to me.

Malcolm

Doxyi 200mg since 13 Sep 07 (100mg since 26 July 07), Naci 1200mg since 27 July 07 (600mg NAC since 9 July 07), Azi 250mg 3xweek since 31 Aug 07, Flagy pulses started 3 Oct 07, diagnosed MS Aug 06.

Malcolm

Wheldon Protocol since July 07. Doxyi 200mg July 07, Naci 1200mg July 07, Azi 250mg 3xweek Aug 07, Flagyli pulses Oct 07, diagnosed MSi Aug 06. Intermittent Aug 08.