Checking in

Submitted by Jim K on Tue, 2011-03-22 23:17

Hello to all here at Cpnhelp-

I have not updated in quite a long time, nor been in touch much with the site. Life has been busy and good, and all the energy I have turned to living it, and seeing to my career and personal development. Had to get off the intense focus on illness and it's constant shadow. So a brief update.

Married my amor a year ago Valentine's Day! This was the culmination of a number of years of long-distance relationship and a life before lived too much alone. It's been a year of bliss and continuing. I am very grateful.

I've been doing a bit of writing again for my professional websites and blogs, as well as to develop some book projects. It comes in fits and starts.

I have been doing more international travel, with my wife of course (!), for my work. This has been very satisfying and rewarding, but also cumulatively tiring. Leading me to the next point.

I took a 9-10 month break from the CAP, staying on azith and general supplements as well as anti-candida maintenance. I was getting very little reaction to pulses by that time, and wanted to have a lower profile during the nesting period leading up to our wedding and forming a life together thereafter. But... into last fall and winter I noticed a cumulative fatigue, brain-fog and inflammatory reactions after exercise. I resisted the whole thing for a while, but clearly the cryptic load was building up, along with it's inflammatory process. I confirmed this by doing a pulse of Tini and had  stronger reactions than I liked. Damn!

Along the way discovered that my thyroid balance was way off, and that I have a couple of methytlation defects that I'm working with. Taking time to get these in order.
Back to the basics. Increasing thyroid meds. Taking 800mgs metafolin two to three times a day (none of the reported detox reactions and little else noticeable from this yet) I'm currently doing short 3-4 day pulses of Tini until I run out, then will switch to metronidazole as my insurance doesn't cover what it used to. I'm also working gradually up on monolaurin and a biofilm protocol that Dr. Powell has found useful.

I'm sure a number here may find it disappointing or disheartening to hear that the the founder of this site is not a paragon of health. But I've always been clear here at Cpnhelp that this is not an easy treatment no guarantees, and there are more factors going on then we really know. We gotta grow up.
Honestly, I hate having to re-up my enlistment in the CAP, though I'm grateful for its help. Clearly, this stuff is not truly beatable for many of us but, like many diseases, is at least controllable if we are not cavalier about it. It's easy to get complacent, or just plain fucking tired of it being the center of attention for so much of ones life. But still better than the alternative, I must say. Just the fact that I could turn my attention to making a new life says something about how much I had been able to recover from four+ years on the CAP.  Of course, I must credit my lovely wife-- I know just how lucky I am to have found such a generously understanding partner. Takes a while in life to get some things right!

I've also been following closely the emerging XMRV related research. I participated in one pilot study by Klein and Silverman at the Cleveland Clinic, looking for the virus in the urological system. No virus found for me, but I don't consider this to be definitive. They know so little about the conditions for measuring it accurately. I've not sprung for the full testing from Utah, as I think there's a lot shaking out right now and no standardization for it to make sense. But I think the difficulties getting well from Cpn, the tendency for many of us to have multiple infections, the other diseases that seem to co-occur, all these point to a common or interacting factor that degrades neuro-immune functioning, at least to me.

Rant coming: I'm absolutely apoplectic at the rank fraud, failure of public duty, diversion of funds, slow down efforts and downright stupidity of the CDC for 30 years in the US, and the equivalent in Great Britain. This has all come more to light as the entrenched forces marshall against anything new that might dethrone their dogma. That CFS/ME sufferers in UK are diagnosed with a mental disorder (somataform) and therefore barred from physiological treatment, is a crime.That many of us have already died from this and related diseases (go ahead, look at the mortality figures for this diagnosis) while people responsible for fostering research sat diddling their egos is worthy of public flogging.

Rant done.

I am guessing that I'll get a slew of responses to my catch-up. I can promise that I'll be able to respond to you all. Taxes are due and I'm way behind! I am delighted at seeing new names here, people starting the CAP, getting help from old-timers, some spirited arguments, and even a few apparently flagyl-fueled interactions. Par for the course, but please do watch the tone. It's easy to be reactive on the internet. THIS STUFF IS HARD ON US. No one is having fun being sick. Keep it in mind.

Love you all.

Jim

My sincere congradulations to you and your new wife Jim! 

Travel is all the more interesting when done with a compatable partner.  And to hear that your are well back into the swing of a full life is amazing. 

I was recently chatting with a member here and made the comment that many people take many drugs for the rest of their lives to maintain a state of functionality.  In my opinion CAP in some form or another may be the same for some and you do what it takes to get some quality in you life.  

Currently I have been off all abx for 1 year and continue to do well.  My MD hints with words like cured, I would not go so far as to bank on that, but I a not going looking for more presently.  It will find me if it does and I will deal with it if necessary.

Thanks for your update and rant comments.   The times are certainly changing.

My sincere best wishes,    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

It is wonderful to hear from you again. You are our hero. I am thankful you found a loving wife who will understand and back you up. How is your daughter? I have missed the humor you brought to the site. I still chuckle about the contest with the prize a bag of candy, with one piece of candy Flagyl-flavored.

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)

Congratulations Jim! We missed you. But ,of course, I wish you had come back as advisor rather than fellow sufferer. 

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

Great to see you here, Jim! Sounds like everything is going pretty well for you! And, it's about time; you've been through a lot. (I remember reading one of your first posts on ThisIsMS in 2005; you were becoming too tired to fly and talking about how your quality of life was becoming tunnel-like.)

As for going back on abx, I've often said I'd be happy to take thirty dollars' worth of meds every month, if it'll keep the wolf at bay. It sure beats the alternative. 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

Good to hear all those things, Jim.  I echo Mack - you deserve all good and better!  I, too, remember those very long-ago days of tunnels and the light at the end.  Sounds like you have emerged into the sunshine - but don't let that be your only source of D! 

Rica

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

Nice to meet you Jim and congrats on your marriage and relative success with Cpn

 

Ha           Flagyl flavored candy

 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Nice to see you back but not that you have to restart abx though, isn't it wonderful to have a soul mate by your side? If you are as content as we (my husband of four years) are it makes the treatment just a little easier - although the flagyl tantrums are hard on them.

I look forward to your cool hand on the tiller around here, it's been greatly missed. (Better than being beaten on the head with a wet fish...)

speedbird

Gosh, Jim, doesn't time fly?  More than happily married for now over a year!  You'll get over your little blip soon enough with Mike Pwell and your new wife behind you...................Sarah          A Journey through 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.

Thanks for the update Jim. Congrats on your wedding. Can fully understand why you have chosen the real world over the life of virtual-health forums. Wish that the CAP had worked out for me. I am too sick to benefit unfortunately. I fear for the future.

Hunter: Don't think - experiment

Jim... great to read your update...... I thought of you on Valentines' Day  (really!) and was wondering how you  and your wife were doing as it had been one year.  Yes time flies!  And the destinations  listed for the Gestalt Seminars  must be fun and enjoyable with your wife.

As for restarting CAP, I am sorry for your setback but at least you know what to do and how to do it!

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

Jim, Thank you for your educational aspects and personal dedication to CPN. I have learned so much from your blogs and the hope of the human spirit. You are a pioneer to the fiight against CPN and a vision of hope for many who come to this site.

I have enjoyed reading your update and wish you the best.

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Question for you Jim if you have time 

Do you still think Post Exertional Malaise is caused by Porphyria ?

Thanks

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Congratulation Jim, I wish you happiness and improving health in your new life.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFS and many problems 30 years

Congratulations to your relationship! Realizing what your profession is prevents me from making a joke of myself by apeculating about the benefits of getting one's emotional life well. :-) It also helps explaning the good atmosphere here on CPNhelp (possibly deteriorating in your absence?!? --  I'm a relative newcomer).

I hope your return to CAP will be a breif dash to return to permanently good health.

Borrelia/Cpn arthritis: joint, skin, eye, CNS, respiratory, UG involvment; fatigue. Borrelia Elisa&WB IgG, and CPn IgG and IgA pos, HLA-B27 neg. CAP 5/9/2010 -> 3/2016 2017: some signs and symptoms returning, Borrelia?

Great news about the new mate! We missed you here Jim. Sorry to hear the bug is back. I'm seeing a naturopath in addition to Dr. Powell and have been off abx for over 2 months. Been working on building my immune system with her. Will post the details in a blog soon. I hear what you are saying about being tired of having your life overshadowed by all this disease stuff all the time. So glad to have you back with us! Raven

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

Red

Hey, congratulations on your anniversary, Jim!

Sorry to hear about your relapse, but you know the drill.    I'm sure you'll be back to good health again soon!

 

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-

Hi Jim, Congratulations on your marriage - that is great news! You have been missed, but sorry to hear you have to continue to battle CPN. Some of us are not done yet....

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

Just adding my congratulations, Jim. Sorry to hear about the buildup recurring. I agree that XMRV is well worth watching, but maybe not worth buying into just yet.

AFA your rant: I am astounded by your moderation.

 Good to hear from you in any case.

Ron

On CAP for CFS starting 01/06 (NE Ohio, USA)

Began rifampin trial 1/14/09

Currently: on intermittent

Thanks to all of you for your kind well wishes. I have missed the goodness of community here, and your responses make me realize why. On another note, I had run out of Tini and took one, repeat, one Flagyl Friday night. Saturday morning I awoke to the complete awfuls: nausea, pain, porphyria, mega brain fog. Yikes! Took me half the day and some charcoal to bring myself around. I'm guessing that the Flagyl is more potent for my cryptic critters, which makes sense given that they've been raised on Tini and may have more efficient efflux pumps for it. But I felt like a newbie with the one-pill-pulse! I may go back to Tini for the next pulse and work my way back to the Flagyl. Blessings to you all.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Welcome back to the fun part, Jim. I was out of NAC for awhile, got the shipment, scarfed down my usual four pills (2400mg) and promptly developed major sinus issues for 30 hours. I've been feeling too good lately to bother to pay attention to details, but it's all in the details, unfortunately. Feel better soon!

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