Embarking on CAP - what do you think of this protocol?

Last Fri I saw my new dr who is an integrative MD specializing in Lyme. Very nice, compassionate and down to earth person. The appt was early morning when I am not yet in my best shape. I was so exhausted and brained fogged, my BP was soaring 170/110 so that my hubby had to drive me over and was a big support at the dr's office as well. 

When we finally left the office 2 hrs later, I cried in the car from happiness. Finally I was a patient and not an advocate for myself. Finally I found someone who not only heard me out but also knew what I was talking about and had experience with prescribing CAPi. The dr seemed to have understood me from a half of the sentence. I brought with me some articles and even books but I didn't have to convince him at all. In fact, he has several CAP protocolsi that he has been using for different Lyme co-infectionsi and this is what he Rx-d in my case:

Minocycline 100 mg x 3 /day (he usually gives Doxyi but since I had Doxy before he changed it to Mino),

Rifampin 600 mg at bedtime Mon-Fri only (start 1st week from 300 mg and increase to 600mg on 2nd week),

Azithromycin 600 mg Sat-Sun only.

He suggested to have Benadryl on hand in case of allergic reaction and provided me with emergency contact info. Also to take probiotic 2 pills x 3/day apart from abxi. Other supps will be discussed on follow up visits.

Couple of things that puzzled me though. Before I came to see him I had been dxi-d by a conventional dr-rheum with arthritis and I brought to him the notes of consult. However, his dx was Chronic Fatigue which doesn't seem to be my main complaint. I hope that my insurance will not have problems with this dx as I have to submit claim for reimbursement.

Another thing that I am surprised is why to take Rifampin only 5 days a week, can I develop a resistance to Rifampin this way? The dr didn't think so b/c I'll be taking 2 other abxi.

What do you think?

Comments

Nata again!  You have

Nata again!  You have only been taking doxycycline since the start of January, and since you are taking 200 mg a day, there are no resistance worries with CPni.  It doesn't work that fast.  Don't rush into anything or you might end up giving up the whole lot.  David, my husband, is a microbiologist and that is what he always says to his patients.

Also, re: above, I never took doxycycline on an empty stomach.  If I did, I would throw up.  I find a small glass of milk the best thing.........Sarah

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

Minai, Louise and Sarah,

Minai, Louise and Sarah, thanks a lot for chiming in your experience. It helps a lot to compare and see in perspective.

On one hand, I am afraid to develop resistance to Doxyi alone and my hubby + my dr keep talking to me start a 2nd abxi. But I am more afraid of die-off than of resistance b/c every time I have a crisis, it feels like I am dying. Very scarry.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08 Minocycline 100 mg x 3/day + Rifampin 300 mg/day and had to stop 4 days later due to severe reaction. Re-started abxi with Doxycyclinei< 100 mg x 2/day on 01/14/08.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Arthritic, Relax; so many

Arthritic, Relax; so many teens and adults take only doxyi for long (years!) periods of time for the purpose of combating acne. Resistance is not an issue for you at this point. No need to rush.

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

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

MacK, I just got "what I

MacK, I just got "what I wished for" last night! What a roller coaster but I am even more determined today.

Last eve I took Doxyi on an empty stomach b/c I just didn't feel hungry and may be got overconfident that I haven't had "reactions". I felt nauseated a little right away but went to bed OK only to wake up in 1 hr with the feeling of hypoglycemia. I think it's hypoG b/c I feel so hungry that food could not  satify me  even if I were able to take anything down. I get severe shivers like chills only it's a different feeling, like cold to the core and muscle twitches big time. My heart start racing and BP spikes within a short time. I actually feel how a heat wave flashes up the back of my head. At this time I gasp for air but feel no satisfaction and I want to go to ER though I didn't. However, glucose pills help me to take the edge off my shivers and twitches and additional dose of enalapril (BP meds) helped me to manage thru. I had to snack on some cheese too.

I am thinking, I probably have many body systems invaded with this bug, particularly muscle-skeletal system. I 've had a chronic pain in my neck right at the base of the head for a few years, I always thought it's age deterioration but now I wonder if it's a nest for Cpni?  

On a positive side I didn't have nightsweats last night, but I may be that is due to not getting much sleep?

Well, my conclusion is ALWAYS have something even if alittle bit in the stomach when taking Doxy. And I am going to take my enalapril 2/day instead of 1/day as prescribed, let's see if this helps.  

I guess I am going to postpone adding a 2nd abxi for now, until I my BP doesn't spike anymore.

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08 Minocycline 100 mg x 3/day + Rifampin 300 mg/day and had to stop 4 days later due to severe reaction. Re-started abxi with Doxycycline 100 mg x 2/day on 01/14/08.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Nata, apart from the

Nata, apart from the first two weeks which I don't really remember because I was so nutty and delirious, I had no reactions to an antibiotic as such, apart from a few days after my fifth or sixth flagy pulse, yet In got vastly better nonetheless. 

CPni will only develop resistance to doxycycline if it is continually stopped and started while you still have an active infection, or if you continually take sub-clinical doses.........Sarah

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

Arthritic, Glad to know you

Arthritic, Glad to know you have found a way to take your doxyi and get it past your stomach!  Your strong strong reaction from your initial attempt with Monocycline and Refampin is sure indication that you were likely to be having intense die off, at least that is what happened for me with double dose Doxy as I initially was prescribed. Apart from having to figure out how to get the doxy past my stomach without getting huge nausea and abdomenal pain I had symptoms in most body systems that were intense like a bad flu that did not go away in three days.  I was very much into the decline of my disease before starting the Doxy treatment and know that this was the way to go.  (At no time did I believe that I had dangerous reactions to the drug) Yet the reactions were intensely uncomfortable.  I continued on that dose for 14 weeks before taking a more moderate approach of the Wheldon CAPi dosages and medications.  I am into my 7th month of treatment and am so much improved that I can certainly say that it was worth the early days of distress to get to this point.  I am looking for further return to a functional, enjoyable life. 

For me taking time to build up my dosage of medications over time has allowed my body to move forward with healing.   I have taken three pulses with Tinidiazole and will take my 4th after I see my provider on the 30th of this month.    Some of the aches and pains I had have remarkably gone or are just a nusance now and best of all my thinking and decision making is coming back to me.   Most of all I am being gentle on myself as I find the things that I left undone or incorrectly done.  I am coming back with more patience, kindness and particularly hope for myself and with others.

I sometimes have thought that being ill is harder work that working hard! 

As Minai we are long distance marathoners who at times progress at a steady turtle pace.   And we do make outstanding progress each in our own way and in our own time.

Looking forward to following your posts and progress.

Louise CFSi/ME.CPni positive.Bb positive.

6/24/07WheldonCAPstartedDoxy&NACi.

11/3/07Roxi150mgBIDadded.

11/22/07#2PulseTinidazole500mgBIDadded.

11/27/07CholestyraminePostPulse/PorphoriaSymptomsAdded.

1/15/08Cont.Cholesty.atBedtimeForFatigue,Brainfog,mood.

Next pulse after 1/30/08 date of next MD visit.

  • 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 Nata, not resistant.

Hi Nata, not resistant. You're probably tolerating it so well because it is immunomodulary. I was having trouble walking until starting Doxyi. Took it 2 months before starting Azith and was doing great. it was making me feel so much better! But when I added the Azith, I couldn't tolerate it. So, kept taking Doxy and switched to Roxithromycin. It helped a bit, but then I pseudo-relapsed and was hospitalized. Yet, all of my MRIs showed no enhancement or disease activity, leaving my Neuroi in disbelief. IOW, my MRI results were proof that I had not developed resistance to Doxy. I wish you the best with adding the Azith! --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 Restarted CAPi with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Nata.   Am so glad to know

Nata.

 

Am so glad to know that you are tolerating the Doxyi so well! And, that you have found a new BP med that is working for you. Might your reduction of synthroid have anything to do with your hypoglycemic episodes? Just started treatment for adrenal insufficiency, so am just learning about such things, myself.

 

Thanks for keeping us updated!

 

--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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

It seems like I

It seems like I am tolerating Doxyi too well. I am wondering if I am becoming rapidly resistant to it?

I planned to add Azith on a weekend but no I think may be I should start it tomorrow. I am already 3 days on Doxy only, is it possible to go too slow? 

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily and stopped 4 days later due to severe reaction. Now on Doxycycline 100 mg x 2/day. 

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Arthritic, Be careful what

Arthritic, Be careful what you wish for! And you don't have to have some awful reaction in order to benefit from doxyi. I've never had big reactions to any of the meds, but I sure got better on the protocol!!

You are not going to develop resistance after three days! 

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

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

Arthritic, this is

Arthritic, this is wonderful.  I always take my doxyi twice a day with a full meal, generally the first meal of my day and the evening meal.  For some folks it is challenging to the stomach lining.  So better safe than sorry, it is best taken with food. 

It was and still sometimes is a challenge for me after 7 months so.  I took it alone initially and it took several days before the stomach symptoms "punched me". 

Louise CFSi/ME.CPni positive.Bb positive.

6/24/07WheldonCAPstartedDoxy&NACi.

11/3/07 Roxi150mgBIDadded.11/22/07#2Pulse Tindamax(Fasigyn)(Tinidazole)500mg BIDx5d.11/26/07Cholystyramine@HourOfSleepforBrainfog,memory,irriability X7daysPostPulse.01/01/08#3Pulse 01/15/08 Cholestyramine 1 packet at bedtime for porphoria continually at present.

  • 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 for the tip. I try to

Thanks for the tip. I try to take Doxy with a little food now as I have discovered it is much easier. So far so good :) 

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily and stopped 4 days later due to severe reaction. Re-started CAPi with Doxycycline 100 x 2/day on 01/14/08.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Doxycyclinei seems to be

Doxycycline seems to be much easier tolerated than Minoi. I took my first pill last night, no dizziness or other Mino ill-effects. However, woke up in the middle of the night with severe hunger and had to snack on something. Same thing in the morning - having attacks of hunger and next I know I am thrown into full-swing hypoglycemia. My nose also got congested and my hip pain aggravated, what a good sign! The abxi must be working!

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08 Minocycline 100 mg x 3/day + Rifampin 300 mg/daily and stopped 4 days later due to severe reaction. Re-started with Doxycycline 100 mg on 01/14/08, will go real slow...

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

My nothing-new update.

My nothing-new update.

Well. I did re-start on Minoi reducing the dose to 100 mg x 2 instead of 3 and my muscle twitching , dizziness, BP fluctuations came back only more mild. In a couple of days I got the feeling that I am heading toward the same crisis I just had a few days ago on a Mino-Rif combo. After searching internet I found out that Mino can cause some unusual side effects perhaps due to its high penetration of brain-barrier. So I stopped Mino again and now switching to Doxyi upon my dr's advice.

Meanwhile other things may have contributed to abxi intolerance that I am experiencing. My thyroid levels came back a bit high and I reduced the dose of Synthroid. Also now I am on a new BP meds  - enalapril and it seems to be working well in the few days that I took it. Of course die-off reaction was a big part of me feeling bad and it's amazing that I've already got some measurable improvements just in 1 incomplete week of abxi tx.

Of course it's not good to start/stop and switch abx often but hopefully that this is my last adjustment and I am starting slowly. It's going to be Doxy 100 mg x 2/day for a week, If I am OK, then Azith 300 mg on Sat and will watch how I feel. I am afraid to have any more long-term plan...

 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Re Lymes, I originally

Re Lymes, I originally tested positive for a co-infection of Lymes - Babesia I believe.  It was after that I did the Western Blot & had 5 positive hits on the panel.  The CPni positive was ignored...no one knew what to do about that.  I took an 8 wk round of ?? so I am assuming it is gone now.  Our test for Lymes here in Canada had me negative.  No wonder we don't have a high incidence of Lymes, go figure...the test is not sensitive enough.

 

Blessings on your journey

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

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<

Ruth, I also tested (-) for

Ruth, I also tested (-) for Lyme 7 yrs ago thru the conventional lab. That's when my first sxi started, my PCP suggested Lyme due to such a variety of sx from different body symptoms, including cognitive problems. However, my labs came back (-), he gave up on it and didn;t suggest any tx. I am glad now that I found a dr who treats by the sx, not by labs. He was joking that he doesn't kbow what exactly he is treating but as long as his patients improve with abxi, he prescribes.

Thanks for good wishes.

 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Nata don't jump to

Nata don't jump to conclusions about which abxi is responsible for your reactions.   Taking one abxi may well produce no reactions on its own, but adding another will not necessarily point to either one or the other as being responsible as the combination may well cause die off reaction.  

In my non medical opinion and from my own experience I would say it is most probably die off which is causing you to feel the symptoms you are feeling.   The way forward is gradual addition and increase of ABX.   I am not qualified to comment about Rifampicin and BP medication, but it is known to  be very effective for Cpni, so it will cause quite a lot of die off and that can put the body under stress.  

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

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

Minai and Michele, Thanks

Minai and Michele,

Thanks for chiming in, I value your opiniopns and support. Fingers crossed, I'll get a hang of the tx soon.

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Oh, Nata., thanks for your

Oh, Nata., thanks for your update! Had been so frightened for you, that all would be even worse than you are describing and that you might give up. But, you seem to really have a handle on it. You're obviously a courageous fighter. Smile

 

 

Am so glad for you that some of the arthritic pain has gone/is going away. And, that the doc is working so closely with you.

 

 

But, yes, these issues with Rif and any contraindications certainly should be of concern. Especially because of your BP! Am not sure how much the Wobenzyme may be factoring in. I do tend to agree with you...that it is more from the Rif than it is from the Minoi.

 

 

Will be interested to see anyone else's opinions and advice for you about it, too.

 

 

Here's to hoping that all wil go well for you with the Azith!

 

 

--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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

 

 

 

 

I forgot to mention that I

I forgot to mention that I also was taking Wobenzym with my probiotic and since enzymes increase meds absorbtion, may be that factor played a role too in my reaction. I am off of Wobenzyme for now and want to re-start at lower dose than suggested on a bottle.

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Hi Nata., Hope all is going

Hi Nata., Hope all is going well with you, since you are beginning such aggressive treatment. Definitely sounds to me as if you did immediately begin experiencing die-off--probably no way that you could help not to! My experience in starting was being able to walk better and better from taking the first Doxyi pill. But, severe die-off reactions started after my very first dose of Azith. Your Western blot results might truly provide answers. However, I have repeatedly tested negative on all Western blots and ELISAs for Lyme, much to the surprise of Dr. S. But, positive for Cpni and extremely positive for Mycoplasma, so that's why we decided that Dr. Wheldon's less agressive/slower regime would be much better. Please keep us posted! --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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Wow, I was so sick! But I am

Wow, I was so sick! But I am back and kicking...

I was feeling sea-sick, like if I am off balance with Minoi and slightly nauseated but I still added RIF on a 2nd day at bedtime. A lot of muscle spasms but feeling better at times so I continued my combo for 2 days. On Sat. I got so sick that I was decapacitated. I am not going to describe in detail here as all you know the sxi but one thing amazed me is the severity of my hypoglycemia episodes. I could eat very little for 2 days yet I felt extremely hungry and would have waves of shakiness every 30 min or so. Glucose pills were somewhat helpful. 

Most problematic though was my BP. It went up, especially disatolic number and even increase in my betabloker wouldn't help. My dr told me to stop all abxi and I re-started slowly only on Mino yesterday. He thought my reaction was from Mino, I think it's from RIF and die-off. So, re-starting just on 1 abxi will show which one was a problem. I am planning to add Azith 600 Mg x 2/wk on Sun if everything OK. I'll hold off of RIF for now, too scary.

Oh, after all this muscle twitching that I had, my left arm was left weak, painful muscles and can't raise fully to the side, sounds like rotator cuff tear. 

For some reason my dr thinks that RIF is well-tolerated but that's not what I am getting of this forum and the web. I found a lot of info that RIF interferes with basically all BP meds and my Synthorid as well and being bactericidal it produces very strong die-off reations.

Well, now about positives: I already feel improvements with my inflammations. My right ear doesn't get clogged up anymore, my sinuses don't seem to be as congested, my arthritis pain is decreased, especially in the low back, foot and hands. I am very happy!

Minai, thanks for checking on me.

Anyone had aggravated hypertension">i problem while on CAP especially Rifampin? I would love to re-start Rif sometime in the future as I believe it's like an ultimate abx when dealing with Cpni. Any advice will be appreaciated. Tomorrow I am going to see my PCP to help me keep an eye on BP.

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Today I got my pills and

Today I got my pills and started with Minoi this afternoon. I got dizzy and nauseated when cooking dinner and moving in my kitchen triangle: sink-frige-stove. Now I am all hazy & sleepy even though I took a nap today. That's unusual. Is that possible that I am already feeling die-off effects? I hate to think how I am going to feel in a few days.

My dr says we want to hit bacteria fast and hard to compromise its defenses. If I feel too sick in a few days, then we can reduce the doses or drop 1 of the abxi but not till we have too. I guess we will see next couple of days.

Zazul, thanks for the info. I was reading today on Bartonella, newest research indicates that it may be even more common than Lyme. For some reason my dr doesn't like Levaquin and standardly uses combo w/ Rifampin instead.  

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Starting CAPi this week!

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Looks like the CPni is

Looks like the CPni is getting stirred up already!

I don't know about "hitting the bacteria hard".  Yikes that scare the bejeebers out of me!  CPn has 3 life stages, it is difficult to hit it hard without possibly damaging organs.

Steady wins the race & yours has begun!

You're off!!!

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day

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<

Finally, you say, you were a

Finally, you say, you were a patient rather than an advocate, put so beautifully, (which must be a wonderful experience I have rarely had i must say ....Surprised.),  i hope it continues.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NACi and supplementsi Sept 2007. Doxyi and Roxy full dose by Dec '07.  First Flagyli pulse January 2008.  Changed to Tinii in December 2008.  Stopped CAPi in February 2009 at pulse 16.

thanks, blackfoot, it's the

thanks, blackfoot, it's the only time I met a dr like this since I started my health problems a few years back. Unfortunately.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+). Started on 01/02/08Minocycline 100 mg x 3/day + Rifampin 300 mg/daily.

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

  Bartonella (or BLO –

 

Bartonella (or BLO – bartonella like organism ) this common  co-infection in Lyme disease . Simultaneous treatment cpni and bartonella can be difficult. Bartonella requires the quite aggressive treatment.  Such treatment can be not tolerated by person who has bartonella and  cpn infection (herx and secondary porphyriai)  dr Burasscano recommends Levaquin or Rifampin + Flagyli :  www.betterhealthguy.com/images/stories/pdf/HopeToHealLyme2007.pdf<
Treatment of BLO is:
• Levaquin is the drug of choice. 500mg daily with proton pump inhibitor. Tendon
damage primary side effect.
• Cell-wall drugs used for Lyme are ineffective though may be synergistic with
Levaquin. Remember bartonella is usually intracellulari and cell-wall drugs do
not reach the intracellular spaces.
• Erythromycins are totally ineffective. These may even inhibit the Levaquin
therapy. Biaxin and Zithromax also ineffective.
• Rifampin and Flagyl may be alternative treatments.
• Response to doxycyclines are varied but generally poor.
• Combination therapies may be required.
• Treatment should last 1-3 (or more) months
 In my opinion rifampin and flagyl (+ roxyi or azytro or doxy)  can be the best choice for people with bartonella and cpn.  However this combo can be too strong  on the beginning of the treatment.   I take;  rif (600mg)+ roxy (300mg) + tinii(1000mg) for bartonella  

But I take that  combo after several months of the less aggressive treatment.

 

Rif does not work against spirochaetes but there is the hypothesis that it is active ( like flagyl/tini) against the cystic form of Borrellia.  

 

 

 

Cpn, Mycoplasma pn, Bartonella quintana and henselae

Roxy 300mg, Rif 600mg, NACi 600mg and Tini pulses

 Doxy, Azith

Poland

Cpni, Mycoplasma pn, Bartonella quintana and henselae

Roxyi 300mg 450mg ,  Rif 600mg, NACi 1200mg and Tinii/Metroi pulses, clarithromycin 1000mg

 Doxy, Azith

Poland

Thanks Zazul for this

Thanks Zazul for this link.  It was an interesting read.  Disappointing to note that information on CPni has not come up to speed  in the presentations of these well known these LLMD's at this point.  No doubt it will eventually.

I am hedging my bets for this long, moderate  dose slower approach to my CPn and Bb.  I am beginning to reap the rewards and understand the principles so it makes sense to me. 

I value having the good advice of a promient Medical Microbiologist, cause surely he as studied all the bugs!

Thanks Zazul, Louise   

 

CFSi/ME.  CPn posititve, Bb positive. Started CAPi 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.

  • 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
  • <

Yes, thanks, Zazul for the

Yes, thanks, Zazul for the link. There is actually a name in it, referenced throughout, that Nata. should recognize.Smile

 

Louise:  Agreed. Well, at least Mycoplasma is recognized by these docs as a Lyme henchman. I guess that's a start, anywayUndecided

 

--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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Nata,   Definitely the

Nata,

 

Definitely the wisest advice from Sarah. I couldn't even tolerate Azith, so Dr. S. withdrew his prescription for it and I had to start taking Roxithromycin that I order from overseas at a high price. But, have at least been able to tolerate it better. I sent you a PM. --Minai Smile

 

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 Restarted CAPi with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

Nata, when I first started

Nata, when I first started I took doxycycline and roxithromycin, then after six months changed to rifampicin and roxithromycin.  I never took all three at once, so I should leave the azithromycin at least for now.  My regime was prescribed by my husband, David Wheldoni, who, as a clinical microbiologist doesn't like to prescribe more abxi than are neccesary.......Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi<i< in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
 
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSS was 7, now 2, less on a good day.
Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

 "I cried in the car from

 "I cried in the car from happiness. Finally I was a patient and not an advocate for myself. Finally I found someone who not only heard me out but also knew what I was talking about"

 Good for you, you finally got your day! Of course you are feeling better even before you begin your meds, the weight of being alone abandoned with the illness is off of you!I felt great those couple of days too, until the herx kicked in lol.

 As far as diagnosing you with Fatigue, this is one of the main symptoms they are looking at to be a cause for treating you. This is accepted by medicare etc. If not understood you have your doctor advocate for you with them. I believe they use chronic fatigue because it is the most common overriding symptom that we all tend to have. it is what binds us together from our many different paths of illness! I've been having discussions about this with someon else. It's a bit difficult to explain but you should ask him. It doesn't mean that he doesn't expect your arthritis to get better as well.

CAPi- zithro, flagyli, plaquenil - CPNi +, fibromyalgiai, endometriosis, b12 deficiency

CAPi- zithro, flagyli, plaquenil - CPNi +, fibromyalgiai, endometriosis, b12 deficiency

 If you are suspicious of

 If you are suspicious of having CPNi, please start the protocol slowly..

Mphs, TN. CFSi, hypoT (Hashimotos), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. 6/26/07- CPN Titer 1:256 (normal 1:16); on NACi 2400mg, doxyi 100-2xday, azith 250 m/w/f, and pulsing w/flagyli, estriol, progesterone, synthroid

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Jim, Minai and Ruth, thanks

Jim, Minai and Ruth, thanks for your comments and encouragements. I am so excited that can't wait to start my meds. I even feel better last couple of days. The power of the mind must be at work :)

Now that I thought things over for a few days after the appt, I am going to ask the dr to slightly change the protocol to:

Minocycline 100 mg x 2 /day (instead of 3 times daily that he wants),

Rifampin 300 mg bedtime 1st week, 600 mg on 2nd week (same as he wants) but every day instead of Mon-Fri,

Do I need Azithromycin right now as well? I am not sure about this one. I am so scared of having side and die-off effects.

The dr thinks that I may have co-infectionsi such as Cpni, Lyme and Bartonella according to his physical exam findings. He did say I'll get worse first before I get better and I am so afraid of getting worse.

This week I also have to go back to have blood drawn for Lyme (western blot) to send to Igenex.  

I have started taking VitC 1000 mg /day and probiotic but nothing else just not yet.  I do have charcoal on hand. I have to buy NACi. Is Jarrow NAC formula good? Whelcol is rx-drug, right? I have to ask my dr if he is familiar with it.

A lot to learn here. Thank you again, everyone for replying and reading.

 

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi (+), CMV IgG (+), HLA B27 (+). Starting CAPi this week!

Nata.

CAP Jan'08 to Dec'09 for arthritis. Doxyi, Rif, Azith, Bactrim, Minoi, Clarith, Flagyli, Amoxicillini. Re-started Dec.'10 for residual joint pain and painful heartbeat.Now: Mino 200 mg/day, Clarith  1000 mg/day, Flagyl 1000 mg/

Hi Arthritic! You are off to

Hi Arthritic!

You are off to a good start.  You have good advice above.  The CPni protocol is slowly ramped up due to die off.  This nasty critter in it's 3 life phases is a beast.  When it dies it goes down kicking, fussing & snorting leaving toxins in its wake.

I hope you have been able to start the NACi & the support supplementsi, especially the liver ones & C.  Make sure you have the Vit. C ascorbic for flushing, charcoal caps & glucose.  some here take Whelcol, I am experimenting with Chitosan.  Whatever works to mop up the toxic waste as our bodies reactions to these are sometimes confused with allergic reactions to the meds themselves.

Best wishes for your treatment

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day

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<

Nata.,  This is great news!

Nata.,

 This is great news! What a great start to the New Year.

Jim has just given you the best advice.

If this is Dr. S, don't be afraid to express these concerns to him. Even tell him that you'd prefer to be trying Dr. Stratton or Dr. Wheldon's protocol, if that's what you want to be doing. That's what I did, and that's what he is prescribing. He prescribes the meds, but it's up to me to take them according to the protocol. Yes, you will still have to advocate for yourself. But only to a degree and with someone who is open and friendly about it.

About your insurance re-imbursement concerns...In the over 2 years that I've been seeing him, Dr. S has never diagnosed me with MSi (in spite of the fact that 5 different Neurologists have). His diagnosis of me is that I am "Neurotoxic." Yet, my insurance company has never refused reimbursement. Not once.

Am so happy for you!Smile

--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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

 Arthritic- probably the

 Arthritic- probably the best person to ask about the rationale for this particular protocol is the doctor prescribing it. There may be reasons in Lyme's for this particular approach, and I'm not knowledgeable about that organism. THe protocol is certainly not typical of a starting protocol for Cpni, but may be for other organisms.

From the CAPi's spoken of here, it is different in a variety of ways. The biggest concern is the higher doses of minoi, and rifampin and the rapid ramp up. Unlike Borrealis, Cpn has the secondary porphyriai problem. Hitting Cpn this hard early on can be very problematic for many folks. This fact is not widely known, so a lot of good Lyme's doc's may not be aware of secondary porphyria as a potential problem with Cpn co-infectionsi.

The schedule is not like what is described here. Again, he may have his own rationale depending on the organism he is diagnosing in you.

From what I have read, Rifampin is always taken continuously and not pulsed in any way, but-- I don't know if in combination with the high dose mino resistance is less likely and give you some leeway here.

Basically, you have to ask your prescriber. This is especially important in maintaining a good working relationship with someone you are so pleased to have found. I wouldn't want anyone on this site to second guess your doctor without you consulting with him. We can only tell you what's common here and what the rationale is in relation to Cpn. 

CAP for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, 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, Here is a link to a

Jim,

Here is a link to a Lyme treatment article  FAQ located on the site of the doctor who mentored both Nata.'s doctor and mine:  Burrascano<  Apparently their treatment can be quite aggressive as Nata.'s doc is prescribing. Am surprised as my doctor has always told me that treatment "is not a race, but a marathon."

--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 Restarted CAPi with NAC and Doxy 2/07. LDNi 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA