Most mild CAP protocol in terms of side effects & die-off?

I started CAPi with Minocycline 100mg x 3 + Rifampin 300/day only to stop it due to huge reaction. My dr was thinking in the lines that's one of the abxi causing side effects, perhaps the Mino. Soon I re-started only with Doxycycline 100 mg x 2/day. At first it was OK but I had abdominal pain, aggravated hypertension, hypoglycemia and porphyriasi again and by 10th day it was too severe for me to continue. I mean, I felt like it was life-threatening at the time.

I stopped Doxy a week ago yet still haven't recovered completely. Today I feel that like I was hit very hard on a head but a bit better in general.

My endocrinologist (not the prescribing CAP dr) didn't not think my reaction was a side-effect of Doxy and he drew blood work today to evaluate. He also gave me a home blood glycose monitor.

I haven't seen yet my Lyme-dr who prescribed abxi to me. My appt is coming up on Feb 11. I can not and will not give up on CAP, I want to be healthy so much and CAP is the only way to it the way I see.

However, if I can't tolerate even standard dose of Doxy, what are my CAP/abx choices? My dr is a Lyme specialist, not Cpn and he gives me Lyme/BLO protocolsi. So, when I go to see him I have to know what to ask for or at least to have some arguments on hand.

When last time I spoke with the dr he said that one of the options I have is to start with single Rifampin and then when we see it doesn't cause troubles, add other abx. I am apprehensive of this option b/c from everything I read Rifamping is never prescribed by itself b/c it develops resistance fast. I am afraid that's what my dr will bring up again.  

Pple please share some opinions, suggestions and experiences. May be I just should ask for a smaller dose of Doxy? or Ampicillin + azithromycin?

Any help is greatly appreciated.

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertensioni<, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi<i< (+), CMV IgG (+), HLA B27 (+). Started CAP Jan'08 and failed by the end of the month! What's wrong with me!

Comments

  Yes, 50mg of doxyi is

 

Yes, 50mg of doxyi is subclinical no matter what else you are taking: if you want to get well,you just have to take the bull by the horns, I'm afraid.   Reactions won't last forever, but taking too little every day is just as bad as taking more but every other day...........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.

 Mark... thanks for

 Mark... thanks for catching this ....it was a typo :(   should have been 100 mg 2x's per day.  

Jeanneroz, you mention that you upped your Doxyi<i< dose to 200mg twice per day.  I thought the protocol is 100mg twice per day?

 

Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxy daily & 250 mg AZITH M/W/F, supplmnts

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

Nata, I am one of those who

Nata, I am one of those who has CPni in the gut as I suffer alot of pain in my lower ribs on the right side.

I am also hypoglycemic & have to increase my complex carbs regardless.  My body demands it so check out the diet recommendations too as it all really does matter. 

It is very important to have your carbs up, glucose, charcoal etc. ready in the wings so that if you get the die off reactions (& I think you have experienced that already) get busy.  It is important to help your body rid itself of the toxins.

Also, expect the unexpected.  SLOW is the operative word for us.  Also, about the doxyi doseage, I recall reading somewhere that 50 mg is not enough  at once.  We don't want to make the CPn resistant to the abxi & that can happen.

Best wishes

CFIDSi/ME 25yrs, FMSi, IBS, 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<

I have been very heavy on

I have been very heavy on veggies, I even can eat them for breakfast and recently increased legumes as well. I am not sure though if I eat enough fruits. Since my hypoglycemic episodes, I am afraid of fruits b/c afraid of glycose fluctuations.  I went out today and bought lots of seafood and fish, I guess I'll be cutting down on red meats now. Usually I ate 1 steak a week, not sure if this frequency is too much of red meat. 

I distaste simple sugars though, I haven't had sugar in my tea (but do have honey once a day) for several years. Nor I am big on deserts and cookies. Now, the recommendations are to increase simple carbs as well as complex ones if I am not mistaking, may be it's Stratton's. I may not be good at complying with this one.

About 50 mg Doxyi - if I'll be taking Azith 300 mg 3/week, will be starting from 50 mg Doxy in addition too little anyway? 

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue, back pain. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. 

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/

50mg a day is too little for

50mg a day is too little for an adult......Sarah
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.

What I meant was that if I

What I meant was that if I have 50 mg capsules then I can be more versatile with dosing. For example, I can start with 50 mg x 2 day and increase to 3/day and so on. Would'nt it be better than taking 100 mg every other day or alternating 100 mg and 200 mg a day until comfortable to take 200 mg every day?

Anything to lessen the chance of reactions.

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. Tried Minocycline 100 mg x 3/day and sto

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- no need to kick

 Nata- no need to kick yourself as all of us are a bit foggy getting into the protocolsi and get things wrong. My own infamous one was misreading David Wheldoni's azithromycin dose as 500mg daily! Did that for a couple months before I "came to" and dropped it to three times a week.

Just start slow. Important to know that Cpni infects the intestinal epithelium, so some of us have quite a load in the gut. I think this is a particularly tough one at first, because of the sheer surface area of the gut, but really beneficial to clear out. So perhaps some of your gut reaction is due to this.  

CAPi 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

"Important to know that

"Important to know that Cpni<i< infects the intestinal epithelium, so some of us have quite a load in the gut. I think this is a particularly tough one at first, because of the sheer surface area of the gut, but really beneficial to clear out."

This is exactly how I felt - that my intestinal and stomach lining was inflamed. It even ran thru my head if it's possible that I have bacteria there and it's reacting b/c first of all, abxi go thru guts and kill it in larger numbers than anywhere else.

I sure hope I cleared a few bugs there. :) 

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. 

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/

If you get burning feeling

If you get burning feeling in chest after Doxyi or other meds or even eating - usually behind sternum/breast bone - it's likely gastric reflux. 

To ameliorate the problem - try taking Doxy with at minimum 8 oz of water, make sure you are sitting upright or standing for 30 minutes after swallowing the pill/meds/food (ie no lying down), take 1 to 2 digestive enzyme tablet with doxy (makes it go through stomach faster so less burn time).    It's also okay to drink a few sips of milk or eat a couple of soda crackers (Saltines). 

If the problem happens after eating - try also taking betaine hcl to aid in digestion. 

You want to avoid Tums and other antacids if at all possible because many of them contain minerals which will goof up your medicine absorption.  Worse case - take a swig of pepto bismol if you are really desparate. 

One last thing - if your med is a tablet - it may take longer to digest - which may lead to more burn - ask your pharmacist for capsules - usually dissolve and digest easier. 

Try to stay away from the proton pump inhibitors if you can - Prilosec, Nexium, Prevacid, Aciphex, etc... they will short term solve your problem but very quickly make it worse long term.  You need your pumps to work!

Whatever you try good luck! 

Daisy-Caregiver- Balo's Concentric Sclerosis.  CAP 5/07.  Minoi, Roxy, Diflucan 1-31, Rifampin, Bactrim DS,  Novantrone, Doxy, Azith

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. 

  Look, arthritic and qkam,

 

Look, arthritic and qkam, you aren't taking doxycycline on an empty stomach, are you?  That could be at least part of your problems...............Sarah

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

I was taking Doxyi after

I was taking Doxyi after breakfast and after evening snack with a full glass of water. On first days my BP spiked and muscle spasms, then I felt overwhelming hypoglycemia sxi, the hunger was raging on and on and on and no food could help. Abdominal pain was a minor issue first few days. But then pain increased greatly last couple of days of taking Doxy and it was a last drop to crash me down. 

I think if I started slower, it would be definitely easier. Another thing, probably should've taken it with milk instead of water like you said you did. Oh, well. Live and learn.

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. Tried Minocycline 100 mg x 3/day and sto

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/

i usually take it right

i usually take it right after lunch and dinner my two biggest meals of the day and then it a bit afterword and drink a bunch of water.  i wish it were that easy.  :)

ARthritic, Thanks for your

ARthritic,

Thanks for your post I got alot out of everyone's reponse. I started 200mG of doxyi last week, and it blew me out of the water!  I like the idea of starting slowly.    I had intense stomach pain, cramps burning all throughout my upper body.. and low grade fever.  -  not fun. I live alone and I thought I was going to die last nite.     I'm glad you are doing a bit better. Progress not perfection.

qkcam

I saw your post, sounds very

I saw your post, sounds very similar except I didn't have heartburn. I just felt a terrible abdominal pain as well as other reactions. I actually physically felt how my stomach and intestines lining was inflamed. I am glad replies to my post helped you. I do feel better but unfortunately b/c I stopped Doxyi. Hopefully with  new slow start I'll be more successful.

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. Tried Minocycline 100 mg x 3/day and sto

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/

Thanks everyone for posting.

Thanks everyone for posting. I've re-read everyone's reply a couple of times and went to Cpni handbk to re-read protocolsi.

I think my mistake was that I didn't insist with my dr specifically on Stratton/wheldon protocol. When my dr said that he is not much familiar with Cpn, I was simply afraid he wouldn't treat me. Now I am kicking myself for wasting another month, money and getting myself into serious reactions on top of it.

One question: last 2 days when I was taking Doxyi I had big time abdominal pain, especially the upper part of the digestive tract. I felt like both, stomach and intestines were inflamed. Have anyone experienced that with Doxy or may be other abxi? Should I be concerned to re-start with Doxy because of this?

Nata. 

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpn IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. Started CAPi Jan'08 and failed by the end of the month! What's wrong with me!

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, No, you should know

Nata, No, you should know many people here had that kind of reaction in the first few weeks to months of the protocol. It makes sense, since so much of our blood flow goes through our digestive tract on a daily basis, therefore cpni freely travels and lodges there. The good news is, it's one of the first places cpn is addressed by the antibioticsi, for the same reason!

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

I am feeling a bit weary to

I am feeling a bit weary to re-start with Doxyi but I think I'll ask my dr to give me 50 mg rx so I can divide the doses even more.

Nata.

Arthritis, muscle pain & twitching, sinusitis, hypertension">i, hypothyroidism Hashi's, restless legs, chronic cough, fatigue. Cpni IgGi (+), CMV IgG (+), HLA B27 (+), ANA (+), Lyme Western Blot results pending. Tried Minocycline 100 mg x 3/day and sto

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/

This concerns me. Before

This concerns me. Before Nata goes to 50mg doses, could someone address what constitutes a subclinical dose and is this simply too little doxyi to safely take?

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

Using rifampin by itself is

Using rifampin by itself is something I've seen lots of warnings against, not only here but elsewhere. Resistance tends to develop quickly. A lot of the measures listed on this site against resistance developing are somewhat distant and theoretical -- shadow-boxing against an enemy that may or may not be there -- but always taking rifampin with another antibiotic isn't one of them: in the petri dish, using rifampin alone on chlamydiae has been found to lead to the development of resistance. Also, there's no reason to think that your response to rifampin would be any milder than the response to the other antibioticsi.

One thing to try would be doing the doxycycline again, but this time with lots of anti-porphyric measures: cholestyramine, glucose...

Some people, Jeanneroz is an

Some people, Jeanneroz is an example, find the azith harder to start because it's half-life is longer so a little harder to modulate the die off. But the same can be done, very slow schedule, with doxyi. It may also be fine to do so with Rifampin, since you are building to a larger dose eventually and will be on it a long time, I'm just not sure so it should be checked. If that is so, then Rifampin every other day, or every third day and build from there would be fine, and wouldn't interfere with her doctors plan as much. Just good to check it with someone knowledgeable. I have great respect for Lyme doc's who have been out there against the tide, but Lyme doesn't induce secondary porphyriai, so they are often more used to a more aggressive approach thinking that you'll get over the herx soon, as it's endotoxini, which is inflammatory but not neurotoxic in the same way. This is new for them when considering Cpni which is both neurotoxic and inflammatory in the die-off.

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 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

Arthritic, you're lucky you

Arthritic,

you're lucky you didn't just burst into flames! Doctors! Wink

 

Brad, DXi: ALS 2/06. EBVi. Lyme tests negative twice... 14hrsInBed/Day. 2006 - 1 yr. on MPi / progression all but halted? / Benicar problems
1/7/08 WheldonCAP started Suppliments&NACi<
1/21/08 1xWk. Zithi 125mg

Brad, DXi: ALS 2/06. EBVi. Lyme tests negative twice... 14hrsInBed/Day. 
1/7/08 WheldonCAP started Suppliments& 1200mg NACi<
1/21/08 1xWk. Zithi< 125mg 63mg

My doc was wanting to waver

My doc was wanting to waver from stratton protocol. I told him that I really wanted to stay with Stratton protocol. he respected my wishes. hopefully, if you decide to go this route, your doc will respect your wishes as well.I wish you well... 

Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBVi, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyli.

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.

Arthritic,  you mention a

Arthritic,  you mention a Lyme doc, but no testing/confirmation of lyme in your signature block (or else I missed it :) ... do you have lyme AND CPNi

I agree with blackfooty's advice... start with the NACi and build slowly.

My experience was I could not start with Azith... I tried but had severe breathing reactions with just one tablet (that was last Spring).  I, too, had to "start over". So I reversed the protocol (took doxyi first)

I started with 100 mg of doxy per day for a month, then the second month I took 100mg on M, 200 mg on Tues... etc. rotating my days.  After I was able to tolerate THAT, I then started daily doses of 200 mg 2X's per day.  It took me about 2.5 months to get up to the full dose of JUST DOXY. I could not push myself any harder/faster as  I had severe die-off and porphyriai reactions.

Oh, and you didn't fail, so there's nothing wrong with you Smile  Pace yourself and listen to your body!  

Jeanneroz ~CPN  4/2007; HHV6, EBVi, CFIDS/FM- diagnosed '07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues (hypo); prior bronchitis/sinus problemsi. 200 mg/doxy daily & 250 mg AZITH M/W/F, supplem

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

Jeanneroz, you mention that

Jeanneroz, you mention that you upped your Doxyi dose to 200mg twice per day.  I thought the protocol is 100mg twice per day?

Take care,

Mark

UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxy Jan 08.

UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi dxi.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi Jan08.  300mg Roxy Apr08 Stopped abxi Nov/Dec08. Building up on Supps again.

Nata.: Excellent advice

Nata.: Excellent advice from everyone! If I were you, i would probably just tell your doc that your mind is made up to do the Stratton protocol. And, provide your doc with Dr. Stratton's contact info for consultation. This is what I did with my doc (mentored by the same doc as yours)for both myself and my daughter. However, mine seems fine prescribing without consulting with Dr. Stratton. And, yours is one of the most well-known Lyme docs--very sincere and convinced that what he is doing for you is the right thing. So, it certainly may be harder for you to tell him, "no offense intended, but I decided on the Stratton protocol, even before I began seeing you. And, given the reactions, I'm having..." Best of Luck! --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

Take a look at

Take a look at http://www.cpnhelp.org/strattonprotocolupdate< and note how gradually Dr. Stratton works up the protocol in cases where there is such strong reactions:

"Once antibioticsi are ready to be started, I would start with a macrolide. We like azithromycin because it is easy to give and has become somewhat cheaper since it went off patent. I would still give just one 250 mg azithromycin tablet and then wait two weeks to see if there is any reaction to it. Then I would give two tablets, one on Monday and one on Wednesday. Once again I would wait two weeks.

I'd continue in this way, adding each dose until the patient was taking 250 mg of azithromycin MWF. If the patient has severe reactions (meaning they can't work - most people are trying to work and take care of a family while they are on this therapy), I'd slow down the process. "

 He has also said that one could start with the doxyi in similar fashion, i.e. one 100mg dose every two days, or less frequently if reactions warrant, and when tolerated every other day, etc..

I don't know if he would do this with Rifampin unless you were already on another antibiotic to prevent resistance, but I would want my doc checking this with a microbiologist or with Dr. Stratton himself. 

CAPi for Cpn 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxy, 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

 Arthritic, my opinion

 Arthritic, my opinion would be to adhere to wheldon/stratton protocol and ramp up slowly.  your starting out with 'big guns' and started at standard doses instead of working your way up...bless your heart, i bet you did feel like you were about to die..

I would start with NACi, 600mg for couple of days, work up to 1200, then 1800, then 2400mg a day. work up as tolerated. once you are tolerating this, start doxyi at 100mg a day. stay on this for a week or so (or to tolerance) and then increase to 100mg twice a day.  when you get to the point that you are ready for azith, come back and post a thread and we will help you start on that..the rifampin and flagyli are to be used later on in the protocol (unless you have MSi.)

I think that there is a good chance that you will be able to tolerate doxy, but you need to start the protocol off slow and work your way up slowly.

Also, i think when you took doxy a few years back, that your CPNi load was lower than it is now.  so, you did not  have the reactions.  

Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpn, myco, EBVi, CMV. on NAC 3600mg, doxy 100-2xday, azith 250 m/w/f/sun, estriol, progesterone, synthroid, and pulsing w/flagyl.

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.

hello, one of the good

hello, one of the good things about starting one antibiotic at a time is that if there is an inexplicably unpleasant reaction - you know what is causing it, rather than stopping and starting again, which is not a good thing to do with antibioticsi.  given that you have been on 3 antibiotics within in the first month, it is no surprise (IMHOi) that you have had a lot of different reactions and are confused about what is going on.

However, I think you are saying your doctor wants to start one-at-a-time now - in other words start again from scratch, which might make things clearer.  i can't comment though on Rifamping, since i have not heard of this on the Wheldon protocol.  p.s. you don't say your dosages, but i started very slowly to see what happened with first the supplementsi NACi (ouch!), then low dosage doxyi, then higher dose doxy, and only then did i add the second antibiotic Roxyi - 2 months later! 

blackfooty

M.E./CFSi 20 years, intermittent.  Wheldon Protocol - Started NAC and supplementsi Sept 2007. Doxy 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.

One more thought: I believe

One more thought:

I believe that all the bad effects I am experiencing are not just to direct tetracyclines side effects but actually die-off and porphyriai reactions. And severe hypoglycemia are caused by a big load of struggling Cpni. I believe that b/c I took Doxycycline some years back for 2 weeks and had no problems at all. So, why so much suffering now of not Cpn-related reactions?

Thanks for listening,

Nata. 

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