the here & now...is, what it is

 

It has been some time since I have updated my blog so here goes.  What to say???, breath, wind me up &&& …. I have been disengaged on the site as I just haven’t had the mindset to handle the stress.  I apologize for this as I know that my support has made a difference to some.  I found myself reading the posts and was getting stressed out & frustrated with it all.

 

So, I naturally retreated to better cope with my own problems.  I just completed my 14th pulse, 1gm a day for 5 days & the last 3 pulses have been quite similar for me.  I have had complete exhaustion, more pain & horrible nausea with lots of sweating, even though I have been consuming large amounts of “moppers”.  I take 1 heaping tsp of yaeyama chlorella, 6-7 gms of Chitosan, glucose as needed, about 7 – 12 gms of Vitamin C either by capsule & or Emergen C.  I also take every supplement on the list except horny goat weed (for men) & Primrose Oil as it plays with estrogen & even some extra supplementsi!

 

I am pleased to be killing the beasts, but it has been hard to handle.  My recent blood work was not surprising- elevated liver & kidney results, my skin has been yellow post pulse.  I just thought I should take more Curcumin to help out??  My cleansing organs have been quite sore during pulses so I have to be careful.  The Hemochromatosis doesn’t help this matter either.  Our frequent weather changes have been kicking the crap out of me as well.  I look forward to living in AZ again this winter for a more level temp which allows me some energy to get more things done, including some walking for fitness.  If it wasn’t for that I know I would be worse off than I am now.

 

For future pulsing, I am going to take my dose down from 1gm a day flagyli to 750 mg for the first few days anyway, play it by ear.  My final pill swallow of pulse 14 was one of the hardest things I have had to do; I was just gagging.  The flagyl is obviously getting to the critters in my intestinal tract/stomach.  I will have to just move forward a bit slower as this is not a race.  I started adding the flagyl pulse 1 with 1 250 mg tab & have worked up from there.  One has to be sensible, it is not worth risking permanent organ damage, afterall, I could have the critters in the very cleansing organs that have to get rid of the toxins!

 

So post pulse, I have had a bit more energy these past few days. I did too much on Sunday & with a weather change, I had extreme pain return yesterday afternoon with just a hint of the Troll Queen.

 

So, overall my progress in my battle with ME, FMSi & Lymes has plateaued for the moment.  My pain levels, overall, are down about 35% from my previous excruciating level of 2 years ago.  My fog has probably improved to about 50%.  This doesn’t mean I am out of the woods just yet.  From being bed ridden 2.5 years ago to now, I have come a long way.  So much so, that really, with this progress, in my mindset in Jan/06; I would have thought I would have been back to work by now.  I still experience crashes where I am flat out in bed for a day or even 2 or 3 & so doing anything scheduled is not back yet.  However, most days now I do get a shower & teeth brushed 2 times, so this is an improvement for all concern, lol   I work around crashes & get some laundry done, clean the fish tank & furnace filter, keep the deep freeze defrosted, make the bed, & swiffer the floor.  I still have a cleaning lady come every other week to help do the major stuff. I do a small amount of a few hours a week volunteering for the Church.  When I can, I take some pictures- but mostly just around the ‘hood as it still takes a lot of energy to do what I have been doing.  I get out with my gf to a movie & something to eat as much as possible- approx ev 2 weeks which is also an improvement from 2.5 yrs ago.

 

I am quite pleased with these improvements adding to that, my ABS is pretty much gone now as long as I take my Yaeyama Chlorella.  My migraines are pretty much all gone, though I have been close to getting one quite a few times.  My headaches, overall are down probably about 65% from several years ago.  I still have 18/18 Fibromyalgia points but my brain& body is handling it leaving the flares for me to work on.  My sinusitis & tinnitus">i comes & goes with pulsing.  I am able to handle my Herpes I with 2.5-3 gms of  L Lysine daily instead of pharmaceuticals & only an occasional Famvir.  My depression is pretty much handled with 1.5 – 2 gms of Inositol daily.  The beauty of Inositol is that when you need a little extra, you take a capsule & don’t have to wait for 3 weeks before it works like pharmaceuticals do.  This is such a blessing for people who have depression.

 

I march on, practicing as much patience as possible.  I have put on 35 lbs but I sincerely think this has something to do with what is written in the Potbelly Syndrome & my under performing thyroid.  I am presently increasing my thyroid  T3/T4 compound every other day & we added 3 very small Cytomel tabs a day.  My levels still aren’t up in the upper thirds which is where my FFC doc said they should be for secondary hypothyroidism.

 

With the weight gain & loss of muscle strength I have been a bit worried from time to time.  My BP is 120/70 after a pretty animated discussion with my doc so the heart is doing well;  I have an arrhythmia so I was a bit concerned.  The thing about chronic illness & ME/CFIDSi is you do what you can.  That whole jump up, get off your ass & go workout just doesn’t fly with this illness.  I am looking forward to getting my basement back, more space so I can get doing some yoga from my disc “Yoga for the Rest of Us”.

 

The thing is, ONE or TWO problems at a time.  One, get rid of the CPni, that is the most important thing right now.  The two part is the continuing juggling act I do with pain, pulsing, hormones, depression, weather changes & fitness.  I think I am doing pretty well.  I really want to get as much as I can back from the abyss so I can have a more active life.

 

Time will tell.

 

Peace

R

Comments

Thanks peeps, for your

Thanks peeps, for your understanding!!

I have had a very long day & I am aching all over.  The house now has new windows installed today (energy star rated!!), I had to go to the lumber store for new oak trim... to buy & then stain!, yess, I was staining for 2 solid hours!  YOI, I am going to pay for this!  My husband is out of town!

I have another early day tomorrow for the final window touches & some lads coming over to move the rest of the clay dirt off the lawn before it is killed.  (I discovered a slow leak & mold in early summer in the basement)In this neck of the wooods (we have 1,000,000 people btw Tongue out), there is this last big push to get "things" done before snow flies!

I can hardly wait for the cleaning lady to come on Friday after the contractors are all done!  sigh of relief!

As for the tinidazole, I mentioned it to my doc before & he just dismissed it.  I will see him again in Nov. for my blood work check & a urine cortisol.  I will try to have one more pulse done by then.  I can't remember...we might not have it here in Canada??  I will check again.  He may just want me to tough out the flagyli with everything else going on Lymes & co-infectionsi from the past??

All for now, I will try to be more active here again soon.  Lots of stress still for me so I have to manage that as best I can.

Be well everyone...you are in my prayers lots...

Expect the Unexpected

peace

r

 

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<

Ruth, I too have missed

Ruth, I too have missed your posts recently, even though I don't venture much onto the site these days due to lack of time.  Your support, but especially your brilliant sense of humour mean so much!

Great news about your progress.

Take care,

Mark

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 Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Hi Ruth, Thanks for

Hi Ruth,

Thanks for sharing.  Don't be in too big a hurry to get back to AZ.  It's still quite warm, averaging around 100 degrees, but... "it's a dry heat"!  Tongue out

As for the thyroid, I really can't believe how much of a difference raising my T4 has already made in just one week.  I was given permission to also raise the T3 if need be but so far, so good.  

I'm still a little leery as to how much of my gloom and doom feeling was pulse aftermath 'cause it lasted a really long time.  I have one more major feat (home repairs) to handle before beginning a new one so we'll soon see.  

NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Supplementsi, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

hello ruth, its good you

hello ruth, its good you are managing to feed your fish!  if only it was so easy to feed ourselves!

though your pulses sound tough at times, i hope you are getting some 'good times' in between, when you feel good in yourself.  (I am around pulse 10 now and my worst times seem to be at the beginning of a pulse and two-three weeks later, but i am getting some bright days now, though they are fairly unpredictable in-between). 

I hope these feel-good days are coming to you, as this can make all the difference in between the difficult days on the CAPi journey.

blackfoot.

x

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.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.

Ruth, Wish you all the best

Ruth, Wish you all the best and hope you feel much better very soon.

This is a long way but you are on the right way!!

Keep up the good work, glad for the improvment you made.

Thanks for sharing.

Take care, Maria

Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid">i.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. CAPi for over 3 years. Back to work and life

Very, very interesting blog

Very, very interesting blog entry ruthless1. I had wondered many times how you were doing & what your story encompassed. I feel satisfied & pride for you knowing you have done a good job with the protocol. That you have real improvements to show for it. Interesting to hear some of your history intertwined as well.

The Flagyli sounds horrid and I can only say that I think you have been very brave to stick it out. I wonder why Tinii would not be better for you? But I am sure you have your reasons.

It is wonderful you can be active at times. They help so much for the times we are stuck sick at home I find. I understand you needed a break from reading at the site here. I recall after months of it while on the MP I just needed to break off at times. Sometimes part of our healing demands we go off and clear our minds from stresses. I think most folks here understand that.

Hope your digestive organs calm down. I am constantly fighting the soreness that comes and goes in them too. I think I have a handle on it and then it is back. But not in as long of periods anyway. I have also gained weight and have a potbelly now. Constantly craving sweets daily is adding to my trouble as I cave into my addiction. I don't seem to have as much discipline nowadays. But that is another story isn't it! Wink

Thanks so much for all that you shared in your blog. Slainte! MM

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

Ruthless, have you ever

Ruthless, have you ever considered to as to switch to tinii?  It is tolerated better by some, perhaps easier for the liver to handle.  Stomach and other adverse type symptoms seem to be much milder.  I have had fever of 102 with is so it is clearly working and I can have brain fog response if I delay on the cholestyramine.  This would likely be the same with Flagyli.  Just a thought if you are going to be seen soon.  Thanks for updating your blog.

Blessings to you, Louise.

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

Ruth- glad to hear how you

Ruth- glad to hear how you are doing. I've missed your posts! I know it's been a hard road for you, but I also know how low you were when you started, so 35% improvement on pain and 50% on brain fog means a lot. You also sound like there is more life, more activity than you have had, and that's such a blessing when you were once flat on your back. It's a slow road, but towards the high ground!

 

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

I tried to add a pic, but I

I tried to add a pic, but I think they are too detailed for here as it didn't happen again!  I give up!

Cool

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<