"Life is a highway & I can't drive 55"

“Life is a highway & I’m gonna ride it all life long”

 

Hello fellow wellness adventurers…… Mad CAPpers

 

I have not been able to post for some time as my life has been…..well, eventful.

 

Now, this has been some good with a good measure of some not so great. 

 

Regarding the protocol; I am just completing pulse #20 for my 2nd year anniversary on full treatment.  It has had my “usual” intestinal upheaval.  I have only been able to get to 1 gm of flagyli a day for 5 days.  In the past I was able to occasionally go to 1.25 gm a day for 5 days, however, this was too stressful for my cleansing organs & in particular my liver.

 

For the 1st time since starting the protocol pulse #19 was…well, pretty darn amazing.  I now know what some of you have posted about.  I experienced increased energy to the point that I was thinking … hhhmmmm…. perhaps I shall go beyond my 5 days at 1 gm.  The fear of the “Troll Queen” ever daunting & my liver concerns had that notion squashed in jig time.  Steady wins the race.

 

I continue the Sodium Chloride & Vitamin C, 10 gms of each daily for 72 hrs protocol between pulses.  This is supposed to help with my Lyme disease per my M.D.

 

Some things remain for me, my mind is still not cleared which concerns me.  It is better than 2 years ago, no question.  The thing is with these illnesses & CPni, you just don’t know how sick you really were until you have cut through some of the dense fog.  I make really stupid mistakes- like, leaving the hose on all night beside the house which caused water to leak in the basement.  Words I am not thinking pop out or something else replaces it entirely, word retrieval is often difficult, concentration is not the best & the brain still shuts down into auto pilot which has my memory messed up, so… the fog is still here.  I wonder if the parasites & bacteria have left some permanent damage.

 

So, I continue on this wellness journey with thoughts of stopping treatment & proceeding  with intermittent within a year.  No rush though, so until the Holy Spirit say stop, I will keep going.

 

Recently, I had a comprehensive food allergy blood test done in the WA, USA.  I would recommend this to others as the results can be helpful to wellness.  I discovered I am highly allergic to eggs, navy beans & pineapple which must be removed from my diet indefinitely.  I have many foods in the high moderate range which I have removed for 4 weeks & will use the recommended rotational diet to bring them back into my body to gauge further reactions.  So, managing my health is taking more time.

 

Since the food allergy results, I have seriously been considering dropping a bunch of my supplementsi as well.  I would leave NACi, C, Resveratrol, chitosan, CoQ10, Milk Thistle – Lyme, Yaeyama & my female natural supplementsi –progesterone cream, pregnenolone, dong quai, black cohosh.  I had to discontinue Curcumin (Turmeric & Curry) due to allergies.  I will try to reintroduce the Curcumin in 3 weeks.  My recent breast thermography was A++ & I seriously, at least partially attribute the results to Curcumin.

 

A lot of my energy has also gone toward the mental stress of the day to day marriage grind.  Since my marriage in ’05, my medical malfunction & pretty well bedridden status within 4 months, my relationship took a downward spiral.  My husband is a workaholic with a high stress demanding job & he just made some choices as to not be around.  I realize it pretty much sucks to be with someone who is ill A LOT…however, it totally bites being the one who is ill ALL THE TIME.  Not having a spouse there for you when the chips are down & the going gets tough hurts on so many levels.

 

The toll these illnesses take on relationships of all kinds is difficult.  The loss of employment, the loss of people you used to call friends…well, you may know what I am talking about.  Friends, families & spouses who just don’t get it & may be having a difficult time themselves.  I venture to say that 99% of you know exactly what I am talking about.

 

For me, these past 8 months have been mostly emotionally stressful.  Most of you know I am a Christian & I will say, the “enemy” attacks believers & especially women Jesus followers relentlessly.  He hates God & he loathes women, the giver of life.  With the help of my Faith family of prayer warriors, I am seeing some light.  Praise God, he is always nearby & there is nothing we go through that our Father hasn’t seen before.  I have read some good books, Captivating, Wild at Heart, Walking with God & now The Bait of Satan is really good & of course the great Holy Bible, the best of examples for life.

 

Thankfully, what doesn’t kill us makes us stronger & I have learned a lot about my Holy Father, myself & relationships.  All of my relationships are now stronger through it all.

 

Anyway, this has taken me about 4 weeks to write here.  I hope you all are doing great!  I know one lady I met on Facebook I told about our site is actually here.  She reports to me

that NAC has increased her energy.

 

I will report in again when the basement reconstruction is finished, I have a bit of energy to actually continue working a bit on my digital slr photography & my 23 yr old daughter, with 2 cats in tow, has moved back home so she can go back to school in Sept. to finish her Arts degree.  YOI, on top of that…. I want to move to a newer house.

 

One day at a time & still some days, one hour at a time.  I am sorry that I haven’t been more help on here the past while.  The rails were coming off & I had to get back to center & had all I could handle on my plate.

 

That is all for now, you all are in my prayers.

 

Peace……r

Comments

Hi everyone, back in again

Hi everyone, back in again for another update.

Husband & I are still seperated - since end of July now.  It has been tough, managing health, counselling, changes that need to be done & a husband very much in denial over the excess baggage & problems he brought to the marriage & thought he dealt with.  Life is hard & no one said it would be easy.

My health has back slid, I was crashed 8 days out of 30, not good... was battling the H1N1, my BP is up, I have had shakes & tremors in my hands & arms, woke up on my back one night with both arms asleep, on the verge of tears most of the time- very emotional, insomnia has been worse, sore chest & heart area.  I went to see my doc & he gave me a note for the disability insurer that I have to stop with these assessments for now.  I just have alot to deal with & I think I was heading for a meltdown.

All this & still pulsing, though I am going to break till around mid Dec or so but will do the sodium chloride & C pulse instead.

Anyway, we march on.  Sorry I haven't been able to be much help around here.  I just don't have what I need to be a help here for now.

peace, Merry Christmass & Happy New Year in case I don't get back here until then.

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<

I'm glad to hear from you

I'm glad to hear from you Ruth, but sorry to hear your problems are not yet improving.  You have much to go through, but I believe your spirit will prevail.  Hang in there, and above all take care of yourself.

Merry Christmas and Happy New Year to you.  May you be blessed, and may the New Year bring you better health and better times.

Wishing you well,

Finch

ME/CFSi since 1991. Cpni diagnosed 6/07. CAPi started 7/07. NACi 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyli to Tindamax 500mg 2x per day for 5-day pulse.

Hi Ruth, welcome back! i'm

Hi Ruth, welcome back! i'm sorry for your marital complications but i know you hit the nail on the head when you sought out our Lord. He will ALWAYS be with you but he never said it would be easy. Keep up the fight and try to start each day with even something as simple as prayer.  Blessings,Kim  

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

Ruth, I am glad that you

Ruth, I am glad that you checked back in.  I too added Reserveratrol last spring. 

I take 325 mg trans-resereveratrol, twice a day, I get mine through www.wholehealth.com< less expensive than some this brand is $26.60/30 capsules.

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
  • <

Seems to me like you have

Seems to me like you have your hands full and that in itself can be very debilitating.   Emotional turmoil is so energy sapping.  

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Hello everyone, I have a few

Hello everyone, I have a few minutes to read & thought I would just update here.

The marriage thing is...well, complicated.  My husband is living at his mothers for the time being.  That whole feeling I get when he is here that he wants to pull the rug out from under me is really tough.  I told our counsellor friends that when he is committed to this marriage, through thick or thin, treats me better, is engaged in this relationship..then he can move back in & I will be pleased to do his laundry when I can.  I am really tired of him not respecting the difficulty this illness gives us day to day.  I am still getting that...well...get off your butt & do something around here attitude.  It drives me a bit batty as I am a typical type A; it is hard for me to not to too much & then CRASH actually.

 I have only been out 3 times this summer to take pictures.  I am meeting a 2nd cousin/amateur photog on Monday to go to a park that has many things old from our historical journey here.  It should be fun, we are having a picnic too.

The weather is starting to fluctuate & get cooler here & this, again, is challenging in the pain department.  I am hoping to be in AZ for the winter again as that alone gives my body a break from the pain as the weather hardly ever changes there!  I can actually exercise there & don't experience the crashes.  It gives my brain a break too.  I read some interesting articles about the new research that has been going on about the brain/pain/ME situation on Phoenix Rising's site http://forums.aboutmecfs.org/index.php<.

I continue to have success with Resveratrol http://www.revgenetics.com/<  There is alot of good information out there & my doc supports this, I have been taking 500mg per 50/lb body weight.  My immunei system continues to struggle as is evidenced with my Herpes 1 break through tinglings despite the L Lysine & alot of probiotics, colustrum & such.  I had biofeedback done the other day to test my vitaminsi & she confirms I have had some improvements but my immune system is still week; this is as I had expected from my sxi.

I have set aside the Vit C/Sodium chloride tabs 10 gms each a day together for the time being.  The doc has me trying a product called Guardian Silver www.guardiansilversol.com< supplement to boost the immune system & help the Lyme Disease.  About 6 weeks ago I had a bulls eye rash on my arm which is an indication my Lyme Disease is still active.  About a week ago, the center of it where the scaby was had this wierd tingly intense itching feeling.  When I scratched it the wound reopened..I hope that is that as it was rather strange.

Well, praise God.  We march on & fight this good fight!

You all are in my prayers, continued success in your wellness journeys.

peace

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<

Hi Ruth!  It's so good to

Hi Ruth!  It's so good to see you here again, but not so good to hear of your latest struggles.  Keep up the good fight!

Finch

ME/CFSi since 1991. Cpni diagnosed 6/07. CAPi started 7/07. NACi 2400mg per day, doxycycline 100mg 2x per day, azithromyicin 250mg M-W-F. 8/09 switched from Flagyli to Tindamax 500mg 2x per day for 5-day pulse.

Hi Ruth - I found my way to

Hi Ruth - I found my way to your blog! The FB friend - three cheers for FB! Glad to hear you are getting two cats for company - I have 2. They will be my last cats, I adore them but I am allergic to them, and to dogs, dust, pollen etc etc. The food allergies sound awful. Too scared to go there yet! Just happy to have some energ & a clearer head to start tackling this FM thing that ruins the quality of life in a big way. See you around & take some good photos, would like to see some of your entries in my photo group. You had a great one in the big group the other day! See you around, Alexandra

ps: love the title of your blog entry!

Glad to hear from you

Glad to hear from you Ruth.  The added members of your household will likely be good for you as company.  Hope your next move works out well.  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 I am so pleased to hear

Ruth I am so pleased to hear from you and despite the marital problems you seem to have found a way to regroup. Hopefully having your daughter - and her two cats (yay for the cats!) with you will strengthen you for the house hunting to come.

Sorry about the food allergies, it's a further complication for you as if timing all the pills wasn't hard enough, so good luck with reintroducing curcumin. Steady as she goes...

 

speedbird

 Ruth, I also apologise you

 Ruth, I also apologise you for interrupting, I should find rica's blog for these questions.

 Rica, so ıf I didn't misunderstand you take amoxisiline against EBs and NACi for antioxidan property(liver protection)+antiEB effect.

 YILMAZ

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

ahh, no worry, this is how

ahh, no worry, this is how we learn

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, My daughter has had

Ruth,

My daughter has had many improvements with CAPi but still suffers from some of the brain fog and memory recall problems you mentioned.  It has gotten a lot better but she still has her bad moments.  I think treating an underlying yeast infection has led to many of the improvements in her brain fog .  Also, her doctor  told us about a supplement called Zen.  He suggested she use it when she is feeling anxious (she was getting panic attacks back in the spring) but I have also noticed it helps with her concentration.  Here is a write up about it that is on the the producers of Zen, the Allergy Reseach Group's, web site:

"For that Buddha-like feeling! 200 mg of Zen offers a unique and natural way to promote relaxation without sedation.* This formula contains a combination of L-theanine and GABA. L-theanine, found in green tea (Camellia sinensis), has been shown to stimulate the production of alpha-wave activity in the brain.* Alpha-waves are involved in reducing anxiety while increasing mental alertness and acuity.* GABA is a major inhibitory neurotransmitter that is critical for normal brain function.*"

 Just wanted to let you know what is helping my daughter.

 Maria

Mother of a teenage daughter with cpni infection. Symptons include migraine, muscle aches, chronic fatigue and brain fog.  Currently taking 1800mg of NACi, 200mg doxycycline, 250mg azithromycin MWF, pulsing flagyli, armour 60mg, 100mg trazodone, iron supplem

thanks for the update WMom,I

thanks for the update WMom,

I actually take a good amount of GABA with my nighttime sleeping remedies.  My understanding about it is it isn't completely reliable as sometimes there aren't the little receptor thingys to absorb it.  I take it daily in the pm anyway.

thanks for taking the time & thinking about me.

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 am really happy to

Ruth, I am really happy to hear of your health improvements. But sorry to hear of your marital problems. Illness is a difficult thing to cope with and it does put a great strain on relationships, especially for some people.   

As you say what does not destroy you makes you stronger.  It is important not to think of oneself as a victim.   Your husband is still the same person as he has always been just showing his inability to cope with life's difficulties, whereas you are coping and doing the right things for you.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

thanks Michele'the reminder

thanks Michele'

the reminder that we are all dealing with our battles in some form or another is very true.  I am looking forward to a reprieve but am clinging steadfastly to the armour of God.

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<

 Rica, do you get NACi

 Rica, do you get NACi together with amoxisilline?

YILMAZ.

KEREM'S TAKECARER;

Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.

My apologies to Ruth for

My apologies to Ruth for intruding into her important blog.

Yilmaz, NACi is an important supplement and is entirely separate from Amoxicillini.

Rica

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

RuthI can't stay right now

Ruth

I can't stay right now but will be back soon.   Please hold on, as it seems you are.  You are finally seeing some windows!  What a thrill   As for the brain - it will comtinue for years to clear.  We have missed you.  the NACi helps so much with the liver.  I am on five abxi. including 600 mg of Rifampin daily and my liver functions are normal.

Rica

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