Chronicles of a Rifampinaut: the Seventh Inning Stretch

Yes, it has been seven months since I began taking Rifampin although it seems more like eight.  It's entirely possible my count is off, it's not terribly important that it would be off by one.  In any case, I'm now on the most intensive CAPi I've ever been on.  I'm now taking Doxyi, Azi, INHi, Flagyl, and Rifampin, along with NACi all at the same time this week.  I started my 23rd pulse on Sunday night, a day and a half later then I generally try to schedule the start day/time (Saturday mornings).

I can without a doubt say this has been the hardest pulse I've ever had.  My walking is definitely affected and I can't long walk without the contact of a tree, wall, or car nearby to steady my gate and to grip onto when I can't easily keep going.  I've luckily not fallen recently, knock on wood, which is rather surpising given how poorly I feel and walk at the moment.  It could likely be because I just am not taking the chance to walk without something nearby to steady myself.  I only find myself walking unaided for relatively short distances...maybe 50 - 100 feet.

I have been concerned lately about health benefits that I get through my job.  I'm in the process of finding a new job and the benefits will lapse between employers.  I think I can keep it going, I forget what it's called, but I know it's not cheap to do that.  I've been giving thought to just buying the medications online and stockpiling them so that I have them to fall back on until new health insurance kicks in.  I think I may be too late to do that as it will take some time for anything I now order to get here, probably months, and there is no gaurantee that it will ever arrive.  So, what to do?  Maybe my doc will give me a longer prescription and I can stock up on my current insurance before I change jobs and then I'll be okay until the new insurance kicks in.  I'll have to ask.

So, I should mention if I haven't before that I have been taking Calcium Pyruvate, generally only 3 grams, 1 time per day; however, I have taken 3 grams twice per day on a couple of occasions.   I take it just before my first dose of Rifampin in the morning and then again in the afternoon before those medications (if I take it a second time).  I don't notice the dramatic reaction I was noticing when I first started doing that but I still do it.  Hopefully, it's had some positive effect.

I've lapsed on Annatto Tocotrienols, I just ran out a few days ago.  I haven't yet reordered.  I'm still trying to decide whether I want to or to put all my efforts into something else like Lauricidin.  My understanding is that the latter covers a much broader spectrum of pathogens to include Cpni, so maybe that's the way to go.  I have been taking Grapefruit extract, Olive Leaf extract, and Caprylic acid.  I think those mainly cover fungal pathogens though, not viral.

I've been giving thought to starting back at the gym.  I stopped back in November when I strained the super spynatis (sp?) in my right shoulder and possibly tore the rotator cuff.  I did that when I grabbed a wall while slipping and refusing to let it go.  Lesson learned.  Eight weeks of physical therapy has me considerably better although I do sometimes feel an ache in my shoulder so I'm not at all thinking it's what it once was.

I've realized that I feel more inflammationi in general then I once did.  I've been meaning to post to the forums to ask what I might be able to take without a prescription that would reduce it without affecting anything else I take?  Or am I better off getting a prescription of something?

I've just reordered (last night) my supplementsi.  Man they are expensive, I just placed an almost $300 order.  I guess if I bought them separately over time, I would probably pay more since I wouldn't be buying them online.  Ugg, I need to win the lottery!

So...I keep going.  Motivation is hard to maintain, as my friend Marie knows.  It's damn hard to keep going.  But what choice do we have?  We know that the conventional medications for MS will not help us for very long should we rely on them.   Disease progresses, maybe not for everyone but for many.  So, keep on going, that's all I can do, and hope that it's not for naught.  Someone mentioned here at some point that Stratton says treatment for MS takes 3 - 5 years.  I'm only into it 2, so I've got a ways to go.  So do you Marie, keep on keeping on.  I'll keep on with you.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

Comments

John, I hope you are feeling

John, I hope you are feeling better soon.  I was wondering considering your reactions if you should back away from one of the meds or reduce dosage?

I see JimK has addressed taking more of the pyruvate to see if that makes a difference.  Remember the other anti toxin measures may need to be increased as well.

Blessings

r

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#9 750mg 5.5 day, 4-25-8

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

 John- at least from the

 John- at least from the theory the pyruvate, if taken consistently enough and in enough dosage for a period, should result in less reaction to pulses, as you would have less cryptic Cpni to kill over time. In other words you are not killing it in it's "stressed" form which generates more of the inflammatory proteins. My experience was that it made initial anti-replication antibioticsi hit a bit stronger, but the one pulse I've done since pyruvate (poor sampling, I know) was easy. So I would doubt that the pyruvate is generating stronger reaction. From what you've said, you aren't doing it in enough dosage consistently enough to make much difference in this. Also, the dose needed to counter reactions is in the same range--5 or 6 grams in my experience. Lower doesn't do much for me at all. 

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

Calcium Pyruvate I was

Calcium Pyruvate

I was reading a discussion that was started by DW and included  Jim, Red, Norman, and others on the action that Ca Pyruvate takes, as well as the classes of the Cryptic formi of Cpni.  I thought of posting this to that thread but decided to post it here instead.  I don't have anything useful to add to that discussion; however, I do want to note my own reactions on this pulse since I began taking Ca Pyruvate maybe 4 - 6 weeks ago. 

I cannot state that taking Pyruvate has been the causitive factor in making this pulse considerably more difficult then other pulses in the past, I simply do not know.  What I do know is that this pulse has without doubt been harder then others I've had.  What is it that makes this pulse harder?  I'll elaborate.

While following this pulse, I've felt more difficulty with walking and maintaining balance.  This difficulty is heightened immediately after taking Pyruvate, waiting an hour, and then taking abxi.  Now, this doesn't mean I'm taking Flagyl immediately after taking Pyruvate as I am not.  More often, I only take Pyruvate 1 time a day in the morning, and then take Rifampin or Rifampin and Azi, depending on which day it is.

On occasion, I've taken it a second time in the afternoon an hour before taking Flagyl, Doxyi, and INHi.  The reaction is the same.  Greater difficulty waking and having balance then before I took the abxi although I don't notice it as much as I do in the morning.  I think the difference may be due to the immunomodulary effect of Doxy and the fact that I've had lunch just a couple of hours earlier, no less then 2 and no more then about 3.

In any case, whether or not Pyruvate is the cause of the greater reaction I can't say for sure.  But given that my reactions in previous pulses have been fairly uniform, fairly mild, I would posit that Pyruvate is the reason.  I can only hope that it is a positive.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INH 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

It's called cobra and yes it

It's called cobra and yes it is expensive however, depending on your state and it's statues for preexisting conditions you could find yourself uninsurable.  Just something you need to look into to make an informed decision.

Louise

CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • 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           

Louise               

Thanks, Cobra was the term I couldn't remember.  I have been trying to devise a good way to ask about coverage with a prospective employer.  What I've thought I would do is to wait until an offer is made.  Then when it is, I can contact the health insurance provider and ask.  I've also thought that if I found out who that provider is, I can ask my doctor for feedback on them and whether or not they're hard to deal with.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

 John - I am with others

 John - I am with others here - do what you have to - to make sure you have insurance coverage. 

If your current employer is over 50 employees I believe they must provide you with Cobra health insurance under the Health Insurance and Privacy Portability law (HIPPA) for up to 18 months after you leave their employee.  

Even though Cobra insurance from your current employer may be expensive I recommend you purchase it until you are assured your new employer will cover you and that you have cleared any possible pre-existing waiting period they might have.

The same HIPPA law also specifies that your new employer's insurer can not deny you or waive your pre-existing heatlh conditions if you can prove you have been insured at your previous insurer (meaning you must have continuous insurance to prove this).   

The only thing a new employee's insurance can do is make you wait the same pre-existing condition time that they do ALL other new employees - usually 90 days but sometimes surprisingly 6 months to 1 year.  Another reason to shell out for the Cobra.

Daisy - Husband on CAPi 5/07.   Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi, Azithromycin, Flagyli, Minoi<

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. 

Daisy          

Daisy          

Wow, thanks for that information, that helps a lot.  I didn't know the implications of HIPPA when it comes to this sort of thing, that's really good to find out about.  Definitely, if I can maintain the insurance I will.  Hopefully, coverage will be immediate.  We'll see.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

John- may I strongly suggest

John- may I strongly suggest you don't let insurance lapse if you can help it? I know of others who ended up with difficulties because of this, and it would have been better to cover the gap (continuation of coverage the name?).

I was surprised to hear that your pulse was more difficult given that your tolerance of the rifampin has been pretty easy. It's one of those good/bad signs, but I'm sorry your walking has been so affected. You might try bigger doses of the pyruvate. I have found that less than 6 grams doesn't do enough, but in that range at a shot it is more helpful. It may also lower your inflammationi with regular use, either because of some direct anti-inflam effect (reported for ethyl-pyruvate) or because of it's encouragement to convert the highly inflammatory cryptic formi to RB where all the abxi you are taking will whack it. That's the theory at any rate. 

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 300mg Roxithromycin, Tinii 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

 

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

Jim That is and has been a

Jim

That is and has been a concern I've had while looking to change employers, definitely.  I know that I can't stay where I'm at, a change must be made.  That being said, it isn't as easy as it could have been, with this issue to wrestle with.  Would maintaining coverage through Cobra be preventing a lapse?  I guess one of the things I could look for in a prospective employer is whether or not coverage starts immediately, maybe even make it a mandatory requirement that a prospective employer extends coverage from the outset.  I don't know if that will fly though.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Time does fly - seems like

Time does fly - seems like only yesterday you started Rifampin. Actually seems like only yesterday that I started rifampin, but its been 2 weeks already. I've been watching your progress carefully.

Thats quite a combination you are on. I'm on something similar except with tinii instead of flagyli (though I haven't taken any INHi since starting rifampin).

> I think I may be too late to do that as it will take some time for anything I now order to get here, probably months, and there is no gaurantee that it will ever arrive

You are clearly ordering from the wrong places! My abxi all arrive within about a week or two, and I've never had a shipment go missing. Also if you order a lot from the same place presumably it will be worth your while choosing expedited shipping in which case your order will arrive in days and be tracked too. 

Have you tried Ibuprofen for the inflammationi? It does seem to help me somewhat. Benicar also seems to help too.

CFSi. Started CAPi 03-07. Currently: Roxi 600mg + Doxyi 200mg + Rifamp 300mg . Tini pulses 1000mg. Sauna QOD. D 8000IU. Niacin">i 3 x 500mg. Mel 3mg.

Hunter: Don't think - experiment

Garcia          

Garcia          

No, I have't tried Ibuprofen but I've given it some thought, along with possibly aspirin or naproxen sodium.  I'll probably try something, not sure what yet. 

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Okay, indecision is my

Okay, indecision is my enemy.  Consequently, I went ahead and got 3 months of Delta Fraction Annatto Tocotrienols (thanks Jim for the tip on where to buy it) and 2 jars of Lauricidin today.  It wasn't cheap but then it's only money.

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day

Ok, went and looked at my

Ok, went and looked at my sig and see that it's been 9 months since starting Rifampin.  Holy smokes!  Time flies! 

all my best

John

RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi 300mg/daily on 03/17/2008.

best, John

RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazolei 3x400mg/day then 3x500mg/day