Steve J's Update: Rewind?

Steve is nearing the end of a one-month course of tetracycline + azithromycin + fluconazole. Something is happening which I have been waiting to post, but I learned something this morning that pushed me over the edge. Here is an excerpt of a PM I sent to a cpnhelp buddy yesterday:

Steve has been experiencing some emerging/waivering improvements, but they're not solid enough to mention publicly yet: bladder function, balance, upper body strength, depth perception. Yesterday his walking got terrible, and then this morning it was very good. Steve buzzed around too much with his good walking, though, and burned it out pretty quickly. He's been having trouble with muted speech and swallowing/coughing issues for the past few days, so I'm hoping we'll get something good out of that in a little while. A couple of days last week, he had some faint sensations in his [nether regions] (as opposed to completely insensitive), but it's gone now.

I took Steve and his Aunt Connie to a screening of "Under Our Skin" this Saturday. WOW! I more or less knew what to expect from this documentary, but the information blew Steve and Connie away. She kept saying "I had no idea!" It made a huge impression on Steve, and since he's not one to read about such things, it's good to now have a shared base of information with him. One of the best things about him seeing the film was that he saw and heard people with whom he identified, and he heard them speak of improvement, of getting their lives back...after 3 years, 4 years and so on. That was good for me to hear too.

What pushed me over the edge to post his progress on this current course of medication?  This morning on our drive to work, I learned that his nether regions are re-sensitizing again, and he has been experiencing right-side sciatic pain.  It's been several years since that pain faded into numbness.  Since starting the CAPi, I wondered if this pain would recur as a rewind symptom.  I think this is it!

Comments

Hey guys,  I refer to the

Hey guys,  I refer to the prescription as "B-complex," but it's not the full complement of B's.  It's actually "methyl B-12 12.5mg + methyl folate">i 1mg + P5P (B-6) 25mg."  I'm sure this is NOT a one-size-fits-all mix, but rather tailored to Steve's needs.  Many Cpners need more folate, but past trials have demonstrated that Steve doesn't do well with a lot of folate.  He does do well with more P5P.  He was already using 10 to 12g/day of sublingual hydroxo-cobalamin + 150mg/day of oral P5P + no folate of any kind, and that remains the same.  Besides his prior bad reactions to folate supplementation, he tested in the good range of folate absorption in a test ordered several months ago by another doctor (we eat a lot of leafy greens).  My hope in supplementing the B-6 so heavily was to temper his reactions to foods and drugs/supplementsi to which he is sensitive (he comes home with red ears at least half the time).  I haven't seen him with red ears since he started the injections. 

As for the other B's, they are all supplemented with the one exception of B3/niacin">i.  The one time I tried him on a very small dose of it, the flush was intense, and he had a headache, nausea, and diarrhea.  Steve's comments/complaints about how he is feeling are not only extremely rare, but grossly understated.  I had forgotten to warn him about the flush, and he came to me and said "Something is happening to me."  For someone else, that would be like shrieking "You're trying to poison me!!!"  Anyway, judging from the reading I've done on B3, Steve's reaction to it, and by the intensity of Steve's die-off reactions, to date, it has not seemed like a good fit.  Incidentally, Steve also takes 150mg/day of zinc picolinate and just a smidgin of copper.

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, Great news on energy

Joyce, Great news on energy - I need some of that too! Hope it continues.

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.

Joyce, I am looking forward

Joyce, I am looking forward to the updates on this new adjunct for energy support.  I started a thread on methylation hoping to keep track of some interesting comments.   I am supplementing with SAM-e and Vit B complex and sublingual methy-B12 5000mg which has folic acid">i and B-6 in combo plus B complex 50 that came with the SAM-e at no charge, plus the multi vit Bs.  I have settled on SAM-e 400mg devided dose at this point and have been on it for 1 month,  a short stint on 600 was a bit of overdrive for me. 

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
  • <

Hi Joyce, Thanks for

Hi Joyce,

Thanks for sharing!  I had recently ordered some additional supplementsi that are supposed to be good for methylation and they arrived today and thought I would try adding these to the B12 to see if it helps me.  (active B-Complex, SAM-E, Phosphatidyl Serine) 

I found THIS< page and  I was especially curious about this response regarding niacin">i as I've added it to my daily regime quite some time ago and wonder if this is causing me some problems: 

Q: How does high dose niacin (vitamin B3) fit in with methylation?
A: Actually excess niacin is metabolized by methylation and thus uses up methyl groups. One source suggests to aim for under 75mg (usually ~50mg) of niacin+niacinamide per day from supplementsi. If you are taking large quantities of B3, please get your homocysteinei and SAM checked to make sure this niacin isn't excessively taxing the methyl metabolism. Likewise some supplements have lots of B6 (e.g. 100mg) and between 20 and 50mg per day of B6, or less, might be better.

I hope the new supplements will also help me get rid of that empty cartoon balloon! Surprised

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!  

Thanks gals.  Something

Thanks gals.  Something wonderful is happening...hope it lasts.  At our August 18th appointment with Dr. X, my main agenda for Steve was fatigue.  I started the subject by going down the hormone path, but Dr. X re-directed me down the methylation path.  He wrote Steve a prescription for intramuscular injections of B12 + methyl folate">i + P5P and directed us both to take Methyl Excel by Neurobiologix and SAM-e.  Our local compounding pharmacy couldn't get the methyl folate within a reasonable time (but they took a few days to advise us of that).  So the rx was called in by Dr. X to a compounding pharmacy in his city.  Steve's first injection was this weekend and WOW!---energy, alertness, a higher level of consciousness, staying awake when you want to stay awake, sleeping well, awaking with a rested feeling!  No empty cartoon clouds over my man's head now.  WHY DIDN'T WE DO THIS AEONS AGO?!?!?! 

This is an every other day injection, so today he injected the second dose.  The good news (so far) is that he had not sunk to his old depths of fatigue by the time he had today's injection.  The only downsides to this so far is that his driving is a bit more aggressive, and he wants to move his body faster than his neurological wherewithal can handle at this point in his healing.  I hope there's not an accident on the horizon.  That's my only gloomy thought.  Otherwise, these B-complex shots are DA BOMB!!!

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. 

Hi Joyce that's great news

Hi Joyce that's great news on the fatigue front! Apparently Margaret Thatcher used to survive on 5 hours sleep a night thanks to B12 injections.

BTW was it a B12 injection, or a B-complex shot? If its B12 is it cyano-b12, methyl-b12 or hydroxo-b12?

Many thanks,
garcia

Hunter: Don't think - experiment

Loulou. I step in with an

Loulou. I step in with an aside and an apology to Joyce: I believe that Rifampin and Azithromucin are of the same class. Please refute what I have said here if I am wrong, anyone with better knowledge. I think staying on the Doxyi and Rifampin may be a more rounded choice.

Please give my best to Steve, Joyce - my right leg is very close to normal after almost TOTAL numbness up to my middle rib for years and years. I can now wiggle my toes into my collapsible shoes - an impossibility even two years ago.

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

I just keep thinking pain

I just keep thinking pain is good. It works haphazardly.

Pain, numbness, the list goes on.Now considering going back on more rifampin, stopping rulid and going on zithromax instead with doxycycline and tinii pulses when I can tolerate them.

It still puts pleasure in days beginning to post and see responses thereafter. Thank you.

diagnosed MSi Jan.2000 ,  chronic neurological lyme disease Nov.2002.

doxyi 100 mg. 1BID. roxyi.150 mg.? BIDi,adding rifampin soon, pulsed tinii. every 3 weeks, as of oct.17/08, rifampin,naltrexone (LDNi),NACi, nystatin, major wheldon supplemrnts daily,

Michele,  How's your

Michele,  How's your neuropathy overall these days?  We're overdue for a hair report too!

It's odd to say this to anyone, but you'll understand.  I'm on a pulse that is hitting me harder and making me feel more toxic than I've felt in a while.  My ribs in the right back ache, and I have big welts on my upper chest.  I feel Michele-ish in these symptoms.

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. 

It does seem strange

It does seem strange doesn't it to be celebrating pain, I think you once headed a blog with the words counter intuitive; I think this is another instance of it.  

I'm really pleased to hear that Steve's getting feeling again in his lower body even if some of it is pain.   It is a good indicator of progress.   I know because I am getting similar indications in my toes, sometimes I can feel pain in them which is definately a step up from numbness...

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

"Hurts so Good..." Hope

"Hurts so Good..." Hope that's true. Thanks Twick & clam for the moral support. Steve's a little better now that he's not taking my abxi as well as his own.

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. 

Rewind pain, good way to

Rewind pain, good way to explain it. I definetely agree its a good thing

 

 

 

 

 

&nbs

Hi Joyce, I hope this is a

Hi Joyce, I hope this is a milestone and things will continue to change, for the better! I was explaining to my husband yesterday that this is the only forum where when someone says they feel awful people reply with 'that's wonderful news'. LOL!

Best wishes to you both, and give the little critters an extra pat from me :o)

Warm hugs,
Corinna

Corinna | GFAi. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Hi cyypriane! I send you a

Hi cyypriane! I send you a private message

 

regards cesare

Male 38 years (Germany),CFIDSi, IBSi, Enterovirus, Cpni and Bartonella, Dientamoeba fragilis positive. Started Capi on 02/19/08, Currently taking Bactrim, Flagyli, soon adding Malarone and Clindamycin for suspected protozooa. 

Thanks y'all for

Thanks y'all for understanding that I'm not sadistic though I'm celebrating Steve's sciatic pain.  He had a horrible day yesterday, had trouble managing stress at work, walking was terrible. 

At a recent visit to Dr. X, I was prescribed 100mg of doxycycline 3 times a day (up from twice a day).  At bedtime I discovered that I had sorted my latenight doxy into Steve's pills instead of mine, so for the past 3 days, he's been getting 100mg doxy in addition to the 1500mg tetracycline. 

It might be behind the strong symptom exacerbations he's had this week---extra kill>extra inflammationi and die-off symptoms, more "porph."  He's irritable and emotional.  I noticed though that his voice had found its strength again when he hollered at me this morning for running late, because I had petted the dogs and cat too long...poor neglected things.  I may have to be his nurse and mama part of the time, but he's my daddy sometimes too.

 

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. 

Yes, rewind is an excellent

Yes, rewind is an excellent description of that prenomenon! Maybe we should get tired of saying "this is wonderful!", but I never do. What we are doing here is beyond experimental, and every single day there is an unexpected good result.

Somewhere here, in a paper I read of a study - by their terms - a "double-blind long-term (HA!) study (single abxi, three months, I believe) of CPni in joints causing arthritis" Their conclusion was that CPn does NOT cause arthritis. My arthritis is ALL GONE - this is not supposed to happen. Why should Steve not regain feeling, too?

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

Joyce, in addition to all

Joyce, in addition to all your devoted care for Steve and everyone who posts needing help, you've given us a new term for our vocabulary. Rewind is a great way to describe what happens.

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

Joyce- I'll keep my fingers

Joyce- I'll keep my fingers crossed, or should that be legs crossed, that you are seeing signs of neuroi-regeneration here. The intermittent aspect of it should not be surprising as all of these neuro rebuilds seem to be an off and on thing until the enough reconnection and rerouting is established. It's a mystery how it takes place, but the nonlinear pattern at least is consistent in it's inconsistency. I deeply appreciate your devotion to Steve's health and recovery. Like Daisy you are a rare, stubborn and committed spouse. Blessings.

 

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

Joyce -  I am right there

Joyce -  I am right there with you. 

Secretly I am excited about this pain my husband is experiencing.  Once learned in school - pain is good - it means you're alive!

Return of sensation to nether regions coupled with sciatic pain - I am so hopeful this is significant for Steve !

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. 

Louise and wiggy,

Louise and wiggy, Girlfriends, it is exciting, but I'm trying to keep my joy under control, and I guess I should, since this involves pain on Steve's part.

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 and Steve, Great news

Joyce and Steve, Great news - I hope pain goes away soon - but feeling again is wonderful! I want to see that movie too....

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.

Joyce and Steve, such

Joyce and Steve, such wonderful news!

I too took my husband to see the movie early in July, most informative for us (more for him) he is not my caregiver really, my supporter yes and sometimes, when I am looking real good from time to time, can under-estimate the up and down course of this journey. 

See website, www.underourskin.com< for the movie trailer, it is available for purchase there too. 

Thanks for sharing with us.   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
  • <

Thanks Daisy,  I just

Thanks Daisy,  I just realized that I probably sound rather cavalier about Steve's renewed pain.  Like everything else, it's bad and good.  I pray this rewind time will be short.

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 - This is exciting

Joyce - This is exciting news!  Wow !  Very happy for you guys !

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.