Hammered!

The blog I just spent an hr typing just disappeared when I hit a wrong key....hmpf. So I will attempt to be brief. Great Milestone: I took experimental Prilosec with Pyruvate from mid Feb '08 to Mid April '08. A very hopeful and happy time during which I cleaned my entire house and re-painted. It was like a magic bullet. Not-so-great Milestone: Stopped the Prilosec as it caused constipation and switched brands of Pyruvate as the cayenne hurt my stomach. Downhill from there with increasing spasticity, bladder spasms, nausea, leg heaviness, weakness, knee joint swelling and extreme difficulty walking. Switched from Azith to Biaxin to deal with the probable increase in EB'si, but gradually worsened. To illustrate: We traveled to northern MN to attend my Dad's memorial service and I required help with everything. Wheelchair, lift into and out of car for every event..the worst I have ever been--even my good leg was nearly useless. So, back to the Azith, Doxyi, Amox, and Flagyli for now, and hoping to God this isn't permanent. It leaves me bewildered...is this simply horrendous die-off? Or a real exaserbation? I do not enjoy feeling like nursing home material. -kk2

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Wheldon Protocol for rrmsii since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGii's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Oh, almost forgot...for

Oh, almost forgot...for now, the Pyruvate is on hold.

 

[Doxyi, Azith, Biaxin and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Shoot. I just do not want

Shoot. I just do not want to hear this! You were doing so well and stopped because of constipation? Isn't there something to counter that, so you can go back to what was working???? (You painted your house? I'm still dragging my feet on attacking that one, and I have no physical excuse not to.)

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

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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

 I doubt it was the

 I doubt it was the prilosec that changed anything. It was left out of the current Stratton protocol because they found it's efflux pump inhibition was too localized in the stomach to affect much else. However, the Biaxin gives a harder hit than, say, roxithromycin. It would look to me that the brand of pyruvate is the big difference: could it be that the old brand was more effective than the one you switched to? 

CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3

This is so sad - I do not

This is so sad - I do not get it. On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi since April, 2006.  doxyi 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli Pulses start end Sept., LDNi 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

KK2, so sorry to hear that

KK2, so sorry to hear that you are having problems at the moment, this is so cruel as you were doing so well.   Maybe you need to take a leaf out of Daisy's book and see if you can get some predisnolone for the inflammationi that seems to be causing problems.   Is there something going on, some other infection... viral, fungal?

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

  Kathy, no, I really

 
Kathy, no, I really don't get this, since nothing new in your regime should have caused an exacerbation, until swapping azith to biaxin might have caused a sudden extra die-off, plus mostly of course, you were worked up about your dear father.  I would guess you will feel a turn around back for the better in a few days.  Keep calm..........Sarah

An Itinerary in Light and Shadow...........

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

Jim, Not sure if the Now

Jim, Not sure if the Now brand is somehow inferior to Swanson....I noticed extreme rebound spasticity with the former, but not certain that I can attribute it all to that. It might just have been timing. [fewer cryptic, more EB'si] Even though I am very weak the spasticity is quite distressing, my instinct tells me to try a Flagyli to see what it does. -kk2

 

[Doxyi, Azith, Biaxin and Flagyl]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Michele, I am bewildered as

Michele, I am bewildered as to the cause of the bladder spasms. Usually a liter of cranberry juice stops it, but it has been more persistent than usual for me. I definitely have felt as though I'm fighting something. I did get a deep cough from adding the Biaxin back in early May, but it was not that bad. -kk2

 

[Doxyi, Azith, Biaxin and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

KK - I am so sorry to hear

KK -

I am so sorry to hear this.  Discouraging and frightening both.

Probably only time will tell if this is a "die-off" event or true exacerbation.  Will hope for "die-off".

Just curious, when did you switch to Biaxin and to what dose?

Hope you feel better soon!

Daisy - Husband on CAPi 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

KK, I am very sorry to hear

KK,

I am very sorry to hear of your father's passing. 

It is sooo great you had the house painting ability, woooe.  Hopefully this new phase is simply die off.  Can you increase your moppers more to see if that will help you in the meantime!

I pray this turns around quickly.

CFIDSi/ME 26yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi/ME 32 yrs, FMSi, IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

ruthless, yes, the moppers

ruthless, yes, the moppers are out in full force--just got more charcoal and hoping it will do the trick. trying to stay calm here.

 

[Doxyi, Azith, Biaxin and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

kk2, I switched from azith

kk2, I switched from azith to biaxin 3 weeks ago. (Also from doxyi to minoi 100mg per day so far). I too have gotten much worse physically. Yesterday I had to take a break from all biaxin. I have also noticed that when I take the Flagyli it seems to have a greater impact now. It took me awhile to get over my calcium Pyruvate induced exacerbation. My joints now are back to normal and do not hurt. Also from switching to mino from doxy I have noticed a HUGE difference in my ability to tolerate light. I did not realize how much light sensitivity I had with the doxy. I don't think this is a permanent state for you. The critters came out to eat the calcium pyruvate (atp) and they were wacked hard. kc dx ms 1996. started capi 10/05. Started with tinii pulses switched to flagyl pulses. Now almost on continous 500mg flagyl but do need breaks. On doxy 200mg/day azith 250 mwf and NACi 700mg. ldni 2.0mg.

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dx msi 1996. started capi 10/05. Started with tinii pulses switched to flagyli pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi 100mg/day biaxin 1000mg day and NACi 600mg. ldni 2.0mg.

DANG kk2! Hoping you soon

DANG kk2! Hoping you soon find a strategy that works. blessings marie On CAPi since Sept '05 for MSi, RA, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Currently on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, back to pulses of flagyli winter '08 all supplementsi. "Color out side the lines

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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

 KC - What you report with

 KC -

What you report with the switch from Azith to Biaxin is what I was wondering for KK2. 

To me it's entirely possible to achieve new levels of "die-off" response when switching macrolides or even from doxyi to minoi

No two drugs are exactly the same within the same class. 

While azithromycin and Biaxin and roxithromycin all have the same basic mechanism of action in disrupting protein synthesis at the ribosomal unit, they will have different degrees of potency and different drug level penetration to different areas of the body or in the MSi case - brain.   They will also act on the same pathogens using a different chemical molecule connection creating a different efficacy result.  Then of course different drugs within the same class will perform differently with different strains of the same pathogens.

It's quiet possible that each one will pack it's own punch towards CPNi or other pathogens.

Sojourner reports on this phenomena with her husband as he has moved from azithromycin 500mg daily to clarithromycin (Biaxin) to roxithromycin and from doxy to mino with increases and pseudo exacerbation type herxs from each move between drugs in the same class.

The calcium pyruvate may well have exacerbated the reaction as well.  Might be wise when switching agents to d/c the Ca Pyruvate until you ascertain the affects of the new antibioticsi for around two to three weeks then re add the Ca Pyruvate.

KK2 - I hope you are feeling better !

 

Daisy - Husband on CAPi 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxy, Azithromycin, Flagyli, Diflucan

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Daisy, Your input is

Thanks Daisy, Your input is very helpful and is much appreciated. Trying to stay calm here. -kk2

 

[Doxyi, Azith, Biaxin and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6.5,

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Hi Kathy, Checking into your

Hi Kathy, Checking into your blog to follow your situation.

I have a general question that might be a question in itself.   Does anyone know the minimum dose of Biaxin twice a day that is enough to prevent resistance?

Im wondering about the 500 mg dose BID (twice a day) being more than the mininum inhibition concentration, more towards the direction of killing level?  

I have a rx for biaxin 500mg bid and I am hesitant to change over from Roxi 150 mg BID. 

Any thoughts from those of you that might have access to that information for those of us that tend to need to take it a bit more slowly?

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

 Louise, Clarithromycin is

 Louise,

Clarithromycin is FDA package insert indicated for pneumonia due to Cpni at 250mg bid x7 to 14 days.  Biaxin XL at 500mg QD x 7 days.

But while this isn't in the package insert, believe the borrelia studies indicated 500mg bid.  So since you are aiming to treat both, you may need the 500mg bid.

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

Daisy - Husband on CAPi 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Daisy, However that

Thanks Daisy, However that is my point 500mg BID may be enough to floor some of us.  A bit like my 14 weeks on the Borrelia dosage of Doxyi monotherapy 200 mg BID that I started out with, was sick, sick, sick.  

I am considering asking for a reduction to Biaxin 250mg BID as my replacement for Roxi, that is if I can make the decision to changefrom Roxi, it has been so easy for me and I have gotten so much improvement since adding it. 

I have a phone consult next week.  I will ask for a rx for the lesser dosagetoo, I already have rx for first Azytho (not filled) and Biaxin 500 bid not filled.  I like this winnowing down slowly appproach as I am not in the catigory for agressive management due to urgent neuroi presentation and I enjoy feeling human at the same time I am on this 3 - 5 year plan!  Is the biaxin XL a long acting improvement?  At a Lyme presentation last month one Lyme friend said 1000 mg bid another said 500 mg tid, three times a day.  And thoses were monotherapy dosages.

XL is bound to be much more expensive.  It is my understanding that duration of the moderate CAPi treatment vs the intensity of a mono antibiotic Lyme abxi treatment that has been suggested as effective for in dealing with my CPni and Bb.

Thanks for sharing the info from the package insert.  I am still wondering how much my insurance will cover this abxi.  And will it be more cost effective for me than my current Roxi? 

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxy,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

All readers---DW is not

All readers---DW is not available for medical consultation on the internet.

Louise, please edit your post so that it is not open to mis-interpretation.

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. 

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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. 

kk2, I'm so sorry for your

kk2,

I'm so sorry for your sxi exacerbation.  I had a similar disappointment that led me away from the MPi when I was doing marvelously and then BAM! I felt like I began to relapse and I never got a solid answer nor was I able to recover, yet.  

The difference IMOi was that there wasn't any help on the MP site with how to achieve my well being again nor was anyone there interested in hearing how/why/what was happening there as I was one of countless others beginning to suffer.  

My point is... (sorry, I got a little off track) the feelings associated with relapse or loss of well being while on CAPi can be devastating but you will come back around I'm sure.  The folks here seem to be giving you good suggestions and are helping you assess what's going on.  

For me, I believe the big point for me while on the MP was (this is all speculative) loss of my own immunity by depriving myself of D (an important aspect of the MP) and then on top of it I had alot of stress from a personal issue (like you may be having also due to your loss) and to compound all of that, I believe I was suffering from untreated (due to lack of knowledge) secondary porphyrian symptoms. 

So, it may be more of the peripherals than the actual protocol or antibiotics that may have caused your symptoms exacerbation.

I'm curious... why do so many here switch off the original CAP that seems to work just fine and experiment with other agents when folks like Sarah seem to have achieved wellness just fine from the original basics?  This confuses and puzzles me.  

I mean, if I can achieve some sort of "weller" functioning capacity and maintain that and even maybe slowly improve with an occasional few rounds of abxi in the future, I would be content with that.  Maybe this has to do with my devastation of relapse or whatever it was last year but I would have been happy to stay at my 70% health that I felt I achieved last year while on the MP if I would have been able to do so.  

I feel something was vitally missing there.  Maybe it was lack of nutritional support, not getting to all of the life cycles of the bacteria making me ill, my own immunei system weakening due to stress and/or D deprivation or maybe something else.   

Any thoughts on this?  TIA Smile 

3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, 6/08 Zithi 250mg 1/wk, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Joyce, Please delete your

Joyce, Please delete your post now and I would appreciate any further parental corrections via personal message please!

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

  kk2, how are you feeling

 

kk2, how are you feeling now?  This really doesn't sound like an MSi exacerbation, if it affected both legs like that, so much more likely to be due to a peripheral neuropathy caused by the change of meds in addition to the trauma you have been going through.

Reenie said, "I'm curious... why do so many here switch off the original CAPi that seems to work just fine and experiment with other agents when folks like Sarah seem to have achieved wellness just fine from the original basics?  This confuses and puzzles me."  

Reenie, it puzzles me as well, but all I can think of is that I had MS caused by CPni but not anything else much and until it became progressive I was considered about the fittest of my friends.  I rarely got colds, flu only once and the only childhood illness I remember was scarlet fever when six.  Compared to that, my sister got everything going although unfortunately she only got chicken pox two years ago at the age of 43............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

Reenie, I am considering

Reenie, I am considering switching to a macrolid abxi that is available here in the US by prescription that can be taken daily (clarithromycin, Biaxin)as opposed to one that is out of US that my insurance will pay towards the full rx.  If you have read some early posts you will see that Sarah has said that she took very little azythro.  At this point I want to avoid azythro.  Clarithromycin is an appropriate macrolid and available by rx in US.   I am looking for information on minimum inhibitory concentration which from the package insert directions that Daisy quoted seems to be 250 mg BID.

Not much different than taking minocycline instead of doxycycline.  As you are doing now.

Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxy,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Louise,  A timely deletion

Louise,  A timely deletion was my intention, but now that option is gone.  The part of the post addressed directly to you should have been private---for that I apologize.  If there's a cow patty available, I'll step in it every time.  You might notice though that I did ask "please," and I did not criticize you.  I have mis-written several times myself, and I like to think that if anyone were to ask me publicly to edit something out of my comments that could be potentially harmful to someone else, I would be grateful and gracious, not prickly.  Please chill.

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. 

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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. 

Thanks everyone! Indeed,

Thanks everyone! Indeed, recent weeks have been a bit of a dark tunnel for me. It was particularly odd for it to follow directly on the heels of a time period of stellar improvement, but this is what gives me hope. As an n=1, I stand[with all the strength I can muster] by my theory of the pyruvate coaxing much of the cryptic formi into eb'si; then I got hammered by twice daily Biaxin die-off. The caution here is that the pyruvate energized me AND the Cpni. If only we could feed our cells while starving the hostile takeover, but alas! Jim did warn of this; but I am my own longitudinal study---always curious, wanting to find out some things for myself. Currently as I hope and pray to at least return to baseline, I am considering Actos and Cholestyramine. Even the dreaded "P" word, to which I have never had yet to resort, looms ominously on the horizon. ---

[Doxyi, Azith, Biaxin and Flagyli]  for rrmsi since October '05.  Added Amoxicillini 1gm twice daily and LDNi 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi was 6

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Wheldon Protocol for rrmsi since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

Louise, If the MP taught me

Louise,

If the MPi taught me only one thing about chronic infection treatment, it would be that if you use one proven combo of antibiotics to eradicate even only one type of major chronic infection compromising your immunei system as Sarah has done, IMOi and the opinion of many Drs and researchers, your compromised immune system ought to be able to eradicate the other infectionsi.

So my point is that if you use a proven protocol therapy such as what is recommended HERE by Wheldon et al, we ought to do enough good that our immune systems ought to continue to recover on its own, much like the die-off I've gotten even before ever dosing any of the CAPi abxi here from using the supplementsi, iodine, the benefits of the sun, hot epsom salt baths and sauna treatments.

My personal "expert patient" opinion is that trying to use alot of different drugs (ie; various changing of abxi) may cause one more harm than good although I've switched some too from time to time.  I mean, after all, the antibiotics are still drugs and my personal goal is to get off of them at some point in the future. Wink

3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 minoi 100mg, 6/08 Zithi 250mg 1/wk, myco+ CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

Reenie, Minocyclinei is not

Reenie, Minocycline is not on that list that you provided a link to, yet it is in the same abxi class as doxycycline. Clarithromycin is not on that list either yet it is in the same abx as roxithromycin, that is my point.   Azythromycin may have some disadvantage for Bb as it is rapidly absorbed into the tissue and Bb may be present in one of it's more active form in the circulation once it is released from it's cystic state when pulsing therefore it may be more available to inhibit the spyrochetes any turned loose.  Anyway, as I said before, roxi has limited availability in US.  Azythromycin is not a cost effective option for me currently.

I am glad that you are pleased with your program.  I have been pleased with mine for quite some time now.

Best of luck working up your protocol.

 Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxy,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi

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Louise  CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 12.5mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Can only speak for my own

Can only speak for my own theories, but I believe other MSi treating folks may try different antibiotic combinations for the following reasons:

1) I keep a little personal score card of posters here and at THISISMS who have tried CAPi for at least 12 months.  There are probably around an equal number of people who have tried CAP and report they have continued to have disease progress as there are those who have posted positive results. 

This by the way to me is clinically an amazing response.  Ask most physicians if they would be excited about a MS drug that halted and/or reversed clinical disease progression in 50% of their MS patients and they would be thrilled.  Drugs with this type of success rate in complex diseasesi rarely exist.

Personally, I am always examining the treatment failure folks and looking for ways to potentially improve upon what they tried.

2) The neurologist at Vanderbilt seems to be giving patients the disclosure that the protocol works for some but not for all.  The Vandy neuro protocol seems to include Rifampin from day one.  If you have MS you will always be wondering if you will be one of the lucky ones that antibioticsi will help. Both Sarah and Rica who post here used Rifampin in their first year of treatment I believe.

3) It seems that there are some MS'ers who seem initially to have done well on CAP therapy for the first year or two and then suddenly seem to go the other direction - quickly, have a flare or experience clear disease progression.  This is always in the back of my mind, probably others  MS Cappers too.

4) CPNi isn't the only pathogen implicated in MS.  Mycoplasma, borrelia, viral causes, etc... have all in addition to CPN been clinically implicated in MS.  No two people's body chemistry is exactly the same and no strain of any of these pathogens is exactly the same,. ie - may need different drug/bug combo to be effective in different folks. 

What if you are a patient who has multiple co-infectionsi in your brain?  Might take different combo to get it all?  These are all admittedly difficult to treat infections requiring multi drug cocktails and to be taken as long term therapy.

5) If it were easy to get drugs consistently passed the blood brain barrier in adequate therapeutic amounts, brain cancer might not be the deadly killer it is today.  ie - MS is a disease of the brain (and spine) - how much antibiotic do you really need to adequately cross the BBB and address all infectious agents?  And all of those infectious agent's life cycles?

6) Sarah is the only MS patient of which I am familiar who has gone from continuous to intermittment treatment to no drug treatment successfully.  There are probably more from the original Vanderbilt trial that have gone intermittment or off drug but there is no reporting on these patients clinically or antedotal of which I am aware. 

Given that in a lot of ways CAP with MS can be a race against the clock to stop severe and sometimes permanent neurological damage people who don't achieve at least halting of progress by the one year mark either give up or begin to try other versions of CAP.  Giving up doesn't seem to be a good option to me at one year but certainly if you are still progressing to change antibiotics and doses seems not only reasonable but sensible.

Should you try one of the two Vanderbilt protocoli's or the Wheldon protocol ?  At what point, if you are still progressing or have not made any functional improvement, should you switch therapies?  One year, 18 months, two years?  A lot of unknowns for a very scary disease.

Also, what if you just aren't built as an Ironman or Ironwoman in terms of dealing with the die off effects or porphyriai from a CAp therapy, should after a while you begin to experiment with different ways to make the experimental therapy more tolerable so you can stay on it? 

Believe that's what Stratton was aiming for when he added pyruvate to his always experimental protocol.  That and may be the wonderful and ever inventive Dr. Stratton is working on ways to accelerate the treatment time to also improve compliance with therapy and hence results.

Given that nothing regarding any version of a CAP is truly proven, it seems sensible with a highly and at times rapidly disabling disease like MS to always be on top of what the leading edge researchers are reporting as successful, to then discuss it with your own physician and to consider whether you have gain to make by trying different options yourself. 

One size rarely fits all in life and certainly not with drugs and disease treatment.

Jim, Bob O and Marie had it scientifically correct in a recent thread.  It's all experimental.  All of it.

All that being said, for MS, as far as my scientific brain says, a CAP is the best game available in town right now.

Daisy - Husband on CAP 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Diflucan

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Daisy - Husband on CAPi 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy, I believe

Daisy, I believe LifeontheIce is off meds now. Maybe she'll see this and post. I don't, however, think people being off abxi therapy is a valid measure at this point, only because enough time hasn't gone by for folks to get to the finish line yet. I'll be going to intermittent around my three year anniversary this Fall and hope to be off meds at the four year mark. While I expect to be there, I just haven't had enough time yet to get there. Also, I don't see the posts at ThisIsMS - or here - to be fifty-fifty as to those who've been helped and those who haven't by abxi therapy. I do, however, find the posters who feel they haven't been helped are far more vocal than the many of us who have. There also must be a caveat as to the fact that many who 'tried' abx didn't stick with it, didn't do a proper protocol, refused to believe that reactions were just that and not exacerbations, or fiddled with the protocol and brought extraordinary measures to bear on themselves, then claimed failure on the part of the protocol rather than themselves. Dabbling doesn't qualify as doing the protocol.

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

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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

Louise, The difference

Louise,

The difference between minoi and doxyi is mainly the cost factor (coming from a conversation w/Dr Stratton) and mino is a wider spectrum long term "cycline."

Daisy,

I don't have MSi and that may make a difference in what I would do or not do for a treatment protocol.  Most of the folks I know suffering with CFIDSi are often bedridden and homebound as I've been on many occasion during flares of my illness but it's still different mainly than facing a wheelchair or walker and other symptoms often associated with MS.  

I had a bout in the past which looked like MS and I was tested for it but it was ruled out and alot of the symptoms subsided on their own, just like other symptoms I get that come and go from CFIDSi at times.  

You're right that one size doesn't fit all, typically, but if you can get your own immunei system to function properly again thru using the CAPi, then hopefully your own body will know what size it is and do the rest!  

I also think that from reading Sarah's posts and info she has here and on DW's site, she is diligent about taking the supplementsi recommended which in and of themselves give a good boost to her own killing machine, her immune system.  It would be interesting to know how many of the folks that the CAP doesn't work for don't take ALL of the supplementsi recommended!  

3/08 NACi 2400 mg, 4/08 Iodoral 25 mg, 5/08 mino 100mg, 6/08 Zithi 250mg 1/wk, myco+ CFIDS/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addison's

When I change what I believe I change what I do

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Iodoral 25mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons

Don't believe everything you think!  

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