Steve J's Update: Abx change and more

Last Saturday marked my 3rd anniversary of signing on at Cpnhelp.org.  Finding this site was the result of sacrificing television during Lent in 2006 and a strong desire to find a meaningful treatment for my wonderful husband who was declining fast on Rebif, one of the mainstream MSi drugs.  I can't thank Jim, Marie, Bleu, and any others enough for the work and heart that has gone into starting and maintaining Cpnhelp.org.

This past Monday, Steve and I made the long trip to see his CAPi doctor.  The testing performed indicates that Steve's elements of balance and coordination are moving into a nice tight alignment, a sign of neurological healing.  Despite the tests, the current status of Steve's symptoms tells a story of what seems like stagnation.  Yes, his balance is somewhat improved on average, but there is plenty of fluctuation.  I'm concerned that his fatigue, urinary symptoms, walking, and cognitive function are not improving.  Also, the restless leg syndrome has been back for awhile.  I still trust that these symptoms will improve again as we have seen them do earlier in the protocol, but we're trying this and that for the fatigue.  For several months last year, Steve was treated for Lyme by a Lyme expert, but during that time, the Cpn treatment wasn't fully covered, and his condition slipped some.  At this time, I'm having serious doubts about the Lyme diagnosis, and Dr. X doubts it too.  Also, a recent CD-57 test showed a normal count.  For the past few months, Steve has been using a supplement called NT Factor that helps mitochondrial function, but this was very recently stopped.  It actually did help the fatigue somewhat, but it has an ingredient in it that concerns me:  alpha-ketoglutaric acid.  It's a glutamate precursor, and Steve has reacted badly to it in the past.  I even suspect that it might be behind the return of the restless legs and some of his other symptoms that should be improving.

Yesterday Steve's pulmonary function was tested as a prerequisite to the use of oxygen for 20 minutes twice a day.  The hope there is that more oxygen in his blood will help with the fatigue and kill some anaerobic critters at the same time.  We're waiting for the professional analysis, but the uninterpreted results appear to me to indicate that he doesn't have a problem in that area. 

Steve's been using Testim (testosterone) cream for several weeks to counter muscle wasting, and particularly, the fatigue.  We've been advised, though, that it's still too early to judge whether or not it's going to help the fatigue.  It does seem to be reversing the loss of muscle mass already.  At this appointment the doc recommended 75-100mg of DHEAi to help his adrenals...hope it makes a difference.

I broached the subject of changing Steve's abxi, and Dr. X agreed.  Steve will start minocycline and clarithromycin on Monday, and his Flagyli pulses will be lengthened as tolerated.  I'm satisfied with the mino Rx, but I'm not sure I like the Biaxin dosage---it's the same as the azithromycin dosage Steve's on right now, 250mg every other day.  That seems too low and too infrequent for Biaxin.  Well, we'll see what happens next week.

Dr. X switched Steve from TD glutathione gel to oral Readisorb liposomal glutathione, and he switched both of us from regular D3 to micellized D3 drops.  For now, he will continue the Valtrex, Amantadine, Lunesta, LDNi, B-shots, and cholestyramine.

We discussed pathogen testing at the appointment.  I was concerned that Steve might also have chronic HHV-6 infection and was curious as to his current levels of the pathogens we already know about.  Dr. X didn't think that any testing was necessary and said he's assumed Steve has HHV-6 all along since the beginning of his treatment 2-1/2 years ago.  He went ahead, though, and wrote a lab order to check for HHV-6 anyway.

I let the doctor know that when Steve recently had a 3-day course of Vermox for suspected pinworms, he had an exacerbation of symptoms on the 2nd day.  I asked for and got his assent to a course of Ivermectin for Steve in the near future.

That's about it.  Just waiting for Steve's symptoms to catch up with the healing Dr. X sees on those tests.  Since being laid-off, Steve has settled into a routine of riding into town with me three days a week.  He goes to 8 a.m. Mass, prays the rosary, sometimes has coffee with the daily Mass attendees, visits friends, has a very light gym workout, does the banking and some shopping, has the car serviced, etc.  These activities purposefully keep him active, engaged, and prevent loneliness.  When he gets tired, he takes a nap on the sofa in my office.  The dogs like having him at home on his "off" days---Steve and Maggie and Lucy have lots of naps. 

 

Comments

Sounds like he had bad herx

Sounds like he had bad herx - hopefully an up period now. Thanks for peppermint tip and take care!

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.

Louise and jeanneroz,

Louise and jeanneroz, Thanks to both of you for unearthing those informative posts.

Louise, I have felt reticent about posting more concerning Steve's reaction to the increased clarithromycin dosage.  The first day Steve took the increased dosage of clarithromycin was also the first day he used oxygen and the fourth day of his first flagyli pulse since the change to minoi+clari.  By late afternoon he was nauseous and miserable.  I didn't find out about the nausea until I arrived home very late that evening after visiting my hospital-bound mother.  He was in bed and also having crazy RLS...lots of leg thrashing.  He was strongly resistant to trying anything I had to offer fearing he might get sicker, all the while saying "I'm done." meaning he was done with all pill-taking forever.  I finally convinced him to try Alka-seltzer, but it didn't work.  Charcoal only worked to a point after about an hour.  The Questran in the middle of the night calmed the legs down. 

Next morning, he awoke nauseous.  I gave him more charcoal and he skipped all pills.  Not much help from the charcoal.  Driving to work I remembered an incident from my early 20's.  The whole family was at a fish camp in Colorado when everyone there became sick from drinking contaminated well water.  The culprit was thought to be a virus.  Lots of nausea and diarrhea.  My grandmother sent someone to town for spirit of peppermint.  A few drops in a glass of water calmed down our symptoms.  Anyway, when I got to work I was looking for the dosage on the internet, and I noticed that there was much more inforomation available on simply smelling peppermint oil on a tissue (aromatherapy) as a remedy for nausea.  I knew we had some peppermint oil at our house, so I called Steve, told him where the oil was stored, and he agreed to try it.

I was unable to speak with him again for a few hours, but when I did call early in the afternoon, the change was shocking.  Not only had the peppermint oil sniffing knocked out the nausea after about 30 minutes, he sounded energetic and in a great mood.  He's had no problems since then.

Oddly, for the past couple of days, something about him is different.  He's got a bit more energy through the day, and he's in a much better mood---he even seems somewhat more awake and aware, understanding jokes he might have missed before, remembering things I forgot in a few seconds.  This is another thing I can't pin on an identifiable cause.  All I can say is that it follows closely on the heels of the nausea episode, and it coincides with the starting of the Readisorb glutathione, the re-start of the oxygen, the switch from acetyl carnitine to L-carnitine fumarate, and the addition of Seriphos.  This is a very complicated and mysterious life!

So, now I'm watching hopefully for signs that the little improvements will last or even grow.  Incidentally, that viral infection I mentioned resulted in reactive arthritis in my lower back that took several months to resolve.  Of course, it never truly resolved, it was just the beginning of problems that affect me still.  And yes, I'm pretty certain I was already chronically infected with Cpni in my early 20's.

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, JeannRoz that is the

Yes, JeannRoz that is the link to the discussion that I was seeking, thanks for digging it up, I have bookmarked it.  

There are a few other discussions of clari that have pearls of information in them as well and as I find them, I think it might be a good idea that I also gather those other links within the tread

http://www.cpnhelp.org/continuation_a_clari_disc<    that you provided above, for my personal future reference and re-reads.

Joyce, how is the increase of dose of Biaxin going for Steveat this point?    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 Jeanneroz, I am sure

Thanks Jeanneroz, I am sure that this is helpful in itself.  I am recalling a conversational post.  I will look for it when I get back next week.  I recall the detail that I wrote above but the entire thread would be interesting to read.  It was likely a response to someone's question I think.  I'm just curious now and as you know, if you don't get the information when you see it and file it then finding it later is a bit like looking for a needle in a haystack.

Do you have the link for the post that that link comes from?

Joyce may not have seen the information from the link that you share here and I hope she finds it of interest.

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
  • <

Cypriane and Louise: 

Cypriane and Louise:  Daisy's input re clairi........

http://www.cpnhelp.org/continuation_a_clari_disc<

 

JeanneRoz

 

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Joyce, I recall that Daisy

Joyce, I recall that Daisy had said that Clarithromycin was developed to be used with (or without) food so perhaps that might be a way to start and also my Rx is a tablet so it can be split.   Also working it up to 500mg BIDi over a few weeks might be more gentle.  Still have not located that post but it will turn up and when I find it and copy it I will also send you the link.

I am making the change from Roxi to Clari starting next week after returning from a four day conference.  I am going to use the 250mg dose for the first few days and see how that goes for me and as seems prudent work up to the 500mg BIDi by the time I get to the Tinii section of my first round of intermittent CAPi.  I will be taking Clari it with food and with my Doxyi as my Doxy experience has me a bit cautious until I get the feel for my response to it. 

Steve's taking a good strong dose of Minocycline.  I have not had Mino yet but perhaps it would be easier on my than the Doxy.   I may request it when the Doxy Rx needs to be rewritten.  I am going to ask for the 50 mg strength and written for 4 tablets a day so that I can advance it slowly if I make the switch.  

One factoid that I read about the doxy is that it is recirculated and absorbed  in the small intestine as it is excreted in the bile.  Perhaps that is why it seems to be OK to take the dose once a day if you can tolerate it.

It will be interesting to hear how Steve experiences the change in his Abxi's.

Thanks  for sharing,   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
  • <

Is this the link you are

Is this the link you are looking for ... it was in a post from Daisy re Biaxin/Clari  July 29, 2008 entitled "Don't know if this helps.......":

http://www.rxabbott.com/pdf/biapi.pdf<

JeanneRoz

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Louise,  Steve's

Louise,  Steve's minocycline dosage is 100mg twice a day.  The other nurse in the office called me at work this morning to say it was okay to increase Steve's Biaxin dosage to 500mg twice a day, and if he can tolerate it, a new Rx will be given for the increased dosage.  This nurse said that the lower amount had been prescribed due to Biaxin being tough on the stomach.  I remember that during the recent appointment, Dr. X mentioned that he personally had trouble with his own stomach tolerating Biaxin.

Steve's pulmonary function was normal when tested last week, but the doc still wants him to have two twenty-minute sessions per day on oxygen.  We picked-up the oxygen concentrator, cannula, and back-up bottle this morning.  Hope this helps.

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, what is the Rx for

Joyce, what is the Rx for the minocycline and what did you request for the dosage and frequency for the clarithromycin?  There is a form of Biaxin that has an extended time between doses so, is that possibility playing into the mix here?  I seem to recall it stetches it a once a day dose and again somewhere here I read that it is not recommended initially, twice a day form gets better coverage is the thinking there.    Check the Rx label or call the pharmacy and ask, I am curious if this is part of the spacing yet it still would not be an every other day dose, unless as in the early build up of CAPi for someone with overwhelming die off and then that would still be full minimum dose twice a day with every other day is sometimes a way to start ramping up?

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
  • <

Louise, Thanks for finding

Louise,

Thanks for finding that post---you're a peach. I just faxed a letter to Dr. X about this. Hate being a pain in the rear. His nurse probably thinks I have a thing about being right when all I really want is the best for Steve. This is the 3rd time I've questioned the Biaxin dosage.

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, here is the link to

Joyce, here is the link to the blog that the post above is located.  It seems I did bookmark it. 

http://www.cpnhelp.org/first_blog_need_advice_on<

I will look around to see if I can find the post that give an approximation of the equvalency dosage as relates to the various abxi.

What I recall from that post is that it was suggested that;

Doxycycline 100mg BIDi = Minocycline 50mg BIDi<

Doxycycline 200mg BID = Minocycline 100mg BID

Roxithromycin 150mg BID = Clarithromycin(Biaxin)250mg BID = Azythromycin250mg 3x/wk

Roxithromycin 300mg BID = Clarithromycin500mg BID = Azythromycin500mg 3X/wk

Also my understanding is that the higher dosages are bacteriocidal as opposed to the lower dosages being bacteristatic in effect.   So clearly in my case, I started treatment at the bacteriocidal level for the first 14 week duration of Doxy at 200mg BID. And with CPn as a major chronic infection that can and did make me sick, sick, sick.   So my comment about easing into the dosage of clarithromycin is bases on my personal experience with high dose doxy.

I'll continue to look around for the post that suggested this information to me, it may surface and I will post it if I locate it the thread would be a good re-read.  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, Got my lab

Hi Joyce, Got my lab results, Vit D 25-Hydroxy in January was 68, continued on 10,000IU/day now 72.9 mg/mL  Doctors target for me is 100 so I continue at the 10,000IU/d.

CD-57 Oct 30, 2007 was 33.    Repeat on April 8 now 84.  On doxyi, roxi, and tinii combo.  In reference interval of 60 - 360 yet on the low end of that scale.

Here is a cut and past that I saved for my personal reference.  I neglected to also save the link, an oversight.  You might find it by searching the members being addresses.   It would also help to know the title of the forum topic but it could have been a blog.  I guess I will be more careful when I save pearls of information in the future.  I hope it makes sense out of context.  If you find the whole thread I would like the link if you could get it to me and I will be able to use it in the future if sharing this comment in the future seems appropriate.   Louise

Reve - In a past life, I

Fri, 2007-12-28 12:35 — Daisy

Reve - In a past life, I have done considerable work with most of the

macrolides.

Biaxin 250mg taken once daily is not equivalent to Azithromycin 250mg taken

every other day. Very very different therapeutic dosing curves,

pharmacokinetics and dynamics as well as very different MIC's and MBC's for

bugs.

Unless you are under a 100 lbs I would not advise taking Biaxin 125 mg (if

you are- it's available in a 125 strength in the pediatric formulation).

Most likely you should be taking Biaxin 250mg twice daily to start and then

when tolerated ramp up to the dose to 500mg twice daily. There are some

diseasesi that are routinely treated with 1000mg of Biaxin twice daily for a

total of 2000mg per day.

To increase Biaxin's tolerability, take it with food and preferrably food

with a fairly high fat content - cheese for example. Biaxin is designed to

be taken with or without regards to meals so you don't loose any efficacy

from taking it with food but you do blunt some of the rapid absorption and

usually blunt the metallic taste by taking it with high fat content food.

As to the 250mg taken once daily in a pulsed fashion - In every

resistances study that I have seen in which they provoke pathogens to become

resistant to antibioticsi - this is the type of dosing they use.

Subtherapeutic in a pulsed fashion - just the ticket to help the microbe

develop a mechanism of resistance.

Daisy-Caregiver- Balo's Concentric Sclerosis. CAPi 5/10/07. Doxyi 200 mg,

Minoi 100 BIDi 9-1, Azi 375QD Roxyi 300 BIDi 11-5, Rifampin 600mg QD 10-15,

Bactrim DS BID 11-3, Novantrone, Rescue Prednisone

  • 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
  • <

Thank you, Joyce. I did

Thank you, Joyce. I did find your research on the Lauricidin. Yes, Steve sure does take a lot of meds. I can see why you have no way of knowing whether or not it’s effective.

Thanks for the update

Thanks for the update Joyce. I'm very interested in following Steve's reactions to the testim as I've just started taking it myself. At least it smells nice doesn't it! :-)

garcia.

Hunter: Don't think - experiment

Hi Louise,  Here is the

Hi Louise,  Here< is the webpage for Readisorb glutathione.  Your doc already knows how important glutathione is, so I'm afraid the site has little fresh information to offer---other than general glutathione education, the most informative remark I could find on the webpage about this particular product was this: 

"Through a patented process we place reduced glutathione into liposomes, liquid bubbles made from essential phospholipids, to ensure bioavailability. "

The TD glutathione gel Steve has been using is compounded at a compounding pharmacy in Dallas.  Our insurance pays for it, a fact which is surprising to the pharmacists.  They tell me that they don't know of any other clients whose insurance pays for it.  I'll check out the label and get back with you on the exact description.  Dr. X must think the Readisorb offers a superior delivery to the TD gel.  By the way, the change came in response to my question about any future chelation.  Steve's had two courses of oral chelation in the past 2-1/2 years, but he hasn't had any since he had all his metal amalgam crowns and fillings replaced.  The doc said he wanted to depend on glutathione for heavy metal clearance for the time being.

Right now Steve is getting some die-off from his switch to minoi + Biaxin...hope that Biaxin dosage is good for the long haul.  By the way, if you have a link to that rundown Daisy did on the macrolide's, could you please pass it my way?

I'm also curious to know what your new CD-57 count is after 1-1/2 years.  I'd bet it's much better now.  Speaking of measures, it will be interesting to see what Steve's D level is after quite a good while of supplementation of the regular stuff at 5-6,000 IU per day.

The Testim cream Steve uses is not compounded; there's a tiny sealed squeeze tube for each day.  This stuff is obscenely expensive, and I'll be glad to know (hopefully in the near future) whether it's going to help with Steve's fatigue.  If the DHEAi helps, how will we know if the help came from the DHEA or Testim?  That's a serious question, even if it is rhetorical.

Yes, Dr. X is a gem, and he's worth the long drive.

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, I saw this

Hi Joyce, I saw this comment in your post "Dr. X switched Steve from TD glutathione gel to oral Readisorb liposomal glutathione" and want to ask you some more about this.  My MD and I recently discussed the possibility of IV support to  help me deal with any remaining liver enzyme elevations (I have been on a abxi break to bring them down to a more acceptable level).  He mentioned Meyers Coctail with added glutathione.  I am wondering about the forms that you speech about as a potential option since to get the IV supportive therapy I would have to drive 5 hours for each treatment.  If you have any links that could help me present these forms to him I would appreciate them. 

He called in a rx for LDNi to the Irmat pharmacy in NYC. I also spoke with someone at Skip's pharmacy as I was not sure which one he would call into and he was a bit slow getting the Rx to them.  Anyway I have had a chance to compare pricing and I have to say that Skip's is about half the cost of Irmat, Skip's charges under $6 for shipping and Irmat it free shipping but the cost savings at Skip's is worth the shipping particulary since my MD wrote it in 3 months refills. It should be sent out today.I'll be updating my MD about the cost differences next month when I see him.   For me I am beginning to see that LDN is smoothing out any residual rough edges in my reactive emotional skin.   It is so nice to be OK with whatever comes into my line of vision.  Must be the added endorphins that my body is manufacturing.  So I am rambling here.

Anyway another question for you is are these Glutathione topicals compounded medications?  Do you get them locally, are they Rx, do you mail away/  I am asking for all the important information that I would need to get my MD to Rx them for me.   Thanks for sharing if you can.

I have some thoughts about the Biaxin dosage.  Is it possible that it is a temporary ease in to the med?   Biaxin is notoriously effective and perhaps he wants to ease him in without mishap?  With the Minocycline which is also more bang for each mg than Doxyi even with q.o.d.  every other day dosing he would be covered for the resistance problem perhaps.   Also the same with starting with 250mg BIDi, some long term users here have been very affected by it when it was introduced.   I go back to something Daisy hypothesised about the strengths of the macrolides, it is the best I have to go on but it makes sense to my thinking.

I just had a repeat of my D status.  Have been on high dose since early October, in January it was up to 68 will see in the next few weeks what 6 months on 10,000IU has done for my level.  

I also last week had a repeat of my CD-57 it was 33 on Oct 30, 2007, this is the first evaluation since.   It will be interesting to see if it is trending upward towards the normal range.  So wonderful that Steve's is normal now.   Did he have one in the past or is this the first time it was used as a marker for him.

I have missed your regular updates, I always learn so much from you and many others who chose to share their stories regularly. 

I have been on DHEAi since May 2007 being female my dose is 25mg and pregnonelone 100 mg.   This was helpful to me and I could tell prior to the start of abxi a month later.  At that point I slid deeply downhill for a time as expected.   Still I take it daily and with my chronically fatigued history I fell that it is is something that I will likely continue.  Just another part of a larger picture including the CAPi which is the basis.   After starting Bioidentical estrogen and progesterone May 2008 my MD added some testosterone in October, I apply it in the morning and it does increase my stength.  My levels for all of these were very very low.  We have a new compoundng pharmacy in our state now so the trend to such must be increasing demand.  Is the Testim (testosterone) cream a compounded item?  I am always looking at cost/value comparisons, this type of think can vary widely from my observaton.   My MD is good about taking suggestions and really looking at what I request and I am blessed to have found him.  It sound like your CAP doctor is a gem as well.

Thanks for sharing your update.   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
  • <

Happy Easter, Joyce to you

Happy Easter, Joyce to you and to Steve! Am glad to read this update. It probably was wise of you to request further labs for the HHV-6. How else would you know if he has been sucessfully treated for it, otherwise? You had, at one point, posted that he was taking Lauricdin for it. I just started it, too. So am wondering how effective it is. It is great that he isn't declining and is able to stay active!

 

- -Minai

 

 

RRMSi, diagnosed 2/04. NACi 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. IV Clindamycin 5/08. Housebound with Neuropathy and increased spasticity and weakness since 6/08. Stopped CAPi and LDN, 3/09. USA

Happy Easter to you too

Happy Easter to you too Minai.  The Lauricidin is taken for general anti-microbial purposes, but there is no way of knowing how effective it is, since Steve takes so many rx meds and supplementsi.  Dr. X believes in the stuff, and that's good enough for me.  I've researched Lauricidin extensively, and I've seen enough corroboration to think it's worthwhile in that way too.  If you google this site for Lauricidin, you'll probably find my long blog about it easily.  Take care.

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, Thanks for the

Hi Joyce, Thanks for the update. Sorry to hear improvements are so slow but he is moving in the right direction. He has a normal CD-57- I am surprised? Was that the first time he had that test? I am glad you got the HHV-6 test as it may be high - who knows - let us know what you find out. I am glad Steve is keeping busy and I forgot you have a Maggie too :) Take Care

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.

Hey wiggy,  Yes, it's

Hey wiggy,  Yes, it's slow, but so is Christmas.  That was the first time Steve's CD-57 count had been checked.  Wish we had a baseline count from 3 years ago, but you know what they say about hindsight.  We're still waiting on the lab results; other things are being checked too, like testosterone, thyroids, vitamin Di.  Well, my Maggie is an imp dog, not an angel like your little Brownie Scout.  Now, Lucy on the other hand, is an angel dog.  She only misbehaves when we're not looking.

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, Good Friday here. I

Joyce, Good Friday here. I continue with CAPi.

There are way too many days when I'm close to quitting.

Your positive and hopeful message of today has once more inpired me and most readers to keep going even when times are tough......................

Thank you so very much!!!!!!!!!!

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,

loulou,  I'm so thankful

loulou,  I'm so thankful my words inspired you.  It's a long process, and there are times when the hope wears very thin.  The words of Sarah, Rica, Jim, MacK, Raven and other "old-timers" re-inspire me when I sink.

Pragmatically, even if the best result of Steve doing the CAPi is an arrest of progression, that will be cause for satisfaction and celebration.  And in fact, all things considered, that has been achieved already.  It's good at times like these to remind yourself just how awesome a flat trajectory is when speaking of MSi.  Keep going, take the pills faithfully in the face of exacerbations, keep going, keep going, keep going.....

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. 

Well it is good news that

Well it is good news that his results are showing improvements, but it is frustrating (and I know) that the symptoms are not showing the same.   And the fatigue is so pervasive at times that it is difficult to lead a 'normal' life.

I hope you see some real improvement soon, but as much as anything not being condemned to inexorable decline is good.

Keep up the good work.

Hugs.

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

Ahhh Michele,  How well

Ahhh Michele,  How well you know from whence I speak.  Steve spent all Tuesday afternoon with one of his oldest friends after cooking in the morning---a whole day without a nap!  Amazing.  As soon as he came home, though, he crashed and slept the whole evening away then woke up just in time to go to sleep for the night.  He was really whacked all day yesterday.  Socializing is a terrific stimulant for him, but he pays the price later.

Yes, we're ready to see some of that improvement manifest itself, since the doc's tests reveal healing.  While he was resting yesterday, those new abxi were doing a good job---his eyes were good and red and miserable by the end of the day.  Yay!  Fresh die-off and he's not even pulsing!  To the uninitiated, it probably sounds like I'm killing him slowly.

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.