Cpnhelp.org

biohazard,

  How long on which antibioticsⁱ and what effects from each?

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Cpnⁱ, Mycoplasma, Chronic EBVⁱ, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAPⁱ (started 12/08), Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NACⁱ(2.4g/day), D3(12,000IU/day)

biohazard

I hope you will continue with the abxⁱ, and maybe add some, not take away.  My main "head" symptom was vertigo, which only got worse with the added abxⁱ and years.  Of course, there were other symptoms which got worse over time, but I knew when I began getting glimpses of what life COULD be again, I must keep going.  Yes, it was really awful at times with lots of pain but I say again:  it has been SO worth it.  I have been to the place when everything came back because I stopped - I really, really don't want to go there again if it can be avoided. 

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Bio, sounds to me like the Doxyⁱ is working.... if you are not taking any moppers,  it makes it worse. Hmmm....  Doxy making you sick???.... of course, that's because it's killing something.   

If I may be so bold, you have jumped around with so many different supplementsⁱ and trying to find a doctor.......... now you have the ABXⁱ and a doc to work with you (if I recall correctly) and you're ready to pull the plug?  

This protocol literally disabled me..... I started in March of 2007 and it wasn't until April of 2009 that I stopped feeling "toxic" EVERYDAY.   I wasn't able to tolerate pulsing until about 1.5 into this and each pulse seems to bring another issue/symptom.

The ABXⁱ affected my adrenals (even though they were already overworked/stressed from not having a thyroid) and put me in a transport chair for a while.... I had to add hydrocortisone (and yes it's controversial, but it got me out of bed).   I, like, Garcia go through these "cycles" when I pulse with regard to my adrenal/thyroid issues.  So, yes, your cortisol is probably fluctuating and you may not be able to stablize it until things clear out...... I don't know, just going by my experience.

I understand you have to support your family and can't be incapacitated, but I sure hate to see you stop the antibiotics.  We really don't know how the ABX will affect us until we go through it and you really haven't been on it very long.... JMHO

I vote that you stick with it.   Good luck!

JeanneRoz

 

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's

Bio, How many weeks have you been on the doxyⁱ at this point?   Have you had headaches as a symptom off and on in your life?  I agree with Jeanne that the headache is quite possibly a die off symptoms.   I had many many headaches throughout my life.   With my first year of treatment, particularly my first 6 months headaches were common die off related symptom for me.

I did take naproxen sodium which did help.  I also at time took a minimum of fiorinal.  Have you asked your MD for something (medication) for the symptomatic headache pain to use sparingly when you need to work?    Just earlier this month I gave my MD a research paper relating Migraines to CPnⁱ.

Many of us get much worse in early treatment as Jeanneroz just shared.   You can go back to my older blogs and get a sense of how out of it I was.  I am really doing well now but it was over a year before I really got dramatically better.   I started in June 2007 so it is now 2.5 years.  This treatment takes a while and it is not easy but is worth it from my personal experience.    

Porphyriaⁱ has many symptoms so the various moppers are very important.  I believe that headaches can be related to it and if you are beginning to leak it into your system as your cells start into natural apoptosisⁱ you may be building a blood level.

I too hope you stick with the doxy and find something for symptomatic relieve to take the edge off the headaches.    Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

I started the doxyⁱ on 10/15. Symptoms (general toxicity) have gotten worse the last 4 weeks. The doxy immediately removed all symptoms for the first couple of days. After that I couldn't really tell I was taking it. The Zithⁱ on the day I would take it usually produced loose BM and usually made me feel worse. Taking B12 and milk thistle usually helps that.

JeanneRoz - I do have an MD but he's not versed in Lyme so I'm basically calling the shots. The latest symptoms are very alarming. I believe my body is either not detoxing fast enough OR not tolerating the Doxy anymore (almost like an alergic reaction).

I've thought of getting him to do a liver profile perhaps.

At any rate I'm in trouble and will stop for a couple of days and re-evaluate

I think the headache is ear related. The last two years in a row around March I developed ear pressure inside the left ear. I've taken antibioticsⁱ for it but didn't relieve the pressure. It's like something else is happening in my head.

I don't know if it's related to my CAPⁱ. I don't usually get headaches, the only time I've gotten headaches lately is sometimes when I take charcoal. 

 

 

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Bio, You are at the two month point when the going gets tougher as the bacteria begin to die off after a bacteriocistatic period of suspended animation. 

This treatment often feels worse before you feel better, particularly if you have any CFSⁱ type symptoms.  Many of us who have gotten better had to go through the process of getting worse before we got better, we did not get better right away.   

Abxⁱ do act with immediacy for acute infectionsⁱ but with chronic infections the process is quite different and at times difficult to tolerate, this is where ramping up as tolerated comes into account on an individual basis.   Personally, I saw no other option but to go through the difficulties and I did reach the other side, and get my life back.   This is a difficult process for many of us and quitting at the point where you are now, beginning to get die=off is actuallysomewhat common. 

I have not heard of headaches directly from charcoal, it is inert in itself, it is not absorbed from the small intestines.  

For myself it was worth going through the die-off experiences, at the time they seemed endless.  It was certain that I had CPnⁱ persistent infection and for myself, I had no other options for treatment, I realized that I  would keep getting worse.  I saw the process through and am glad that I did.  I wish you all the best.

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Bio,  I am willing to bet that, with you only being about 8 weeks  on the dual abxⁱ,  it's starting to produce die-off and toxic reactions.  I do not believe your body is "not tolerating" the doxyⁱ -- the pathogens are not liking it!  It could be though you are not helping your body to  detox fast enough or using enough of the recommended supplementsⁱ (per the list) to counter endotoxinsⁱ. Etc.

My doctor has never treated anyone with CPNⁱ either and he is not an LLMD..  All he knew was to test me for CPN (after having gone to a couple of other doc's to no avail when I was very ill) and that it was a nasty one to try and get rid of.  I introduced him to the CAPⁱ protocol.  He pretty much gives me what I want and we monitor with blood tests. 

 Some of the first issues I had was with vertigo and pressure in my left sinuses and ear (felt like it was filled with cement), in addition to the extreme respiratory problems.  It took me about 2 months to build up to just the 200 mg of doxy per day.  I was so ill I had to quit work and was in bed pretty much 24/7.    Then a month or so later I added in the Azith starting with 1/2 of a 250 mg tablet  (that's when the REAL fun began).  So you see, (as you know), it depends on the pathogen  load in your body. You may have more than you realize and are discovering this fact as l these reactions start happening .........and, yes it is alarming.

I still have left ear/ sinus issues  and occasionally vertigo when I pulse. My nose runs CONSTANTLY (even when I am not pulsing)  and I still cough alot (these are my minor issues).  

As you have probably read here it's been discussed that alot of what people think are allergic reactions are usually the abxⁱ doing it's job.  I think you just need to ride this through and stick with the protocol and have the confidence it is doing what it is suppose to do.    

Again, just my opinion and meant as encouragement to hang in there..... I am confident the doxy and Azith are doing their  job because of your reactions :)

Happy New Year!     (yeah, it's 0250 and I couldn't sleep ;0)

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's

Hey Bio,

some things that helps toxicity for me. (told by my very well respected CFSⁱ dr)

1) Actigall® (ursodiol, USP) can help with constipation and toxic feelings. it thins bile to let the toxic stuff pass. this is a complete life saver for me.

 

2) take fiber with a little oil to purge bile, and lots of vitamin C all day like 4 grams. green smoothies with kale (never tried)

 

3) suana can really help relieve toxic feelings.

 

4) I was doing the simplified methyaltion protocol too(rich van K style), and hydroxy b12 injections which helped with detox for me.

 

5. (i think the supplementsⁱ and detox support really make a difference and are really required to make it) acidopholis and all the other goodies.

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CPNⁱ off the charts, EBVⁱ, Chronic fatigue 20+ yrs, , tinittus, Orthostatic intolerance, adrenal fatigue, excitotoxicty, porphyriaⁱ, anxiety, depression, doxyⁱ, AMOX, and FLAGYLⁱ since JAN 2009,  

Louise and JeanneRoz - I decided to back off the ABXⁱ instead of stopping. Dropping to one 100mg Doxyⁱ per day did the trick. I hadn't taken the Zithⁱ for about 4 days also. Yesterday was 100 mg Doxy and 250 mg Zith. It was a pretty bad day.

My supplement regime is:

7-8AM: Doxy 100mg (and 250mg Zith if MWF), 1/2 capⁱ B1, 1/3 B2, 1/3 Niacinimide, B5, Biotin, 1/4 PABA, 1/3 Pantethine, 1/4 p5p, 1/4 Folicin,  Glycine, Maca x2 caps. Some mornings also EFA Fish oil, E, D3 and Ox Bile.

10-11AM: 4 Probiotic Caps (I've been taking Milk Thistle and B12 if Zith makes me feel bad, also Quercetin).

Vitamin C seems to make me worse and seems to lower cortisol.

1-2PM: Maybe Magnesium, Chrolophyll, Alfalfa, Charcoal...

Bedtime: Magnesium, Calcium, D3, 1/2 Selenium (Sometimes Manganese, GTF Chromium, Molybdenum)

I've found that Cortisol gets depleted with the higher die off esepcially if I take sulfur as mentioned above.

I probably need to start monitoring Liver function. I assume when the liver is over taxed the ABXⁱ are slowed or stopped for a period until the liver can recover?

 

Mark - Actigall® (ursodiol, USP) sounds interesting. Where did you hear about this one?

Sauna/Steam does help a lot. I would make it a daily thing if I could.

I've been doing a lot of research lately regarding Phase I and Phase II liver detox. I have reason to believe both are underactive. I've had some success supporting some of the different Phase 2 pathways (Acetylation, Sulfation) as well as trying to gently stimulate Phase 1. I think if I could figure this out the improvement would be dramatic. I've tried the Methylation thing in the past, got a huge die off type reaciton from it. Patience and trial and error seems to be thecorrect methodology here.

 

 

 

 

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Bio, there's nothing wrong with backing down to the lower dose, if that's what it takes to keep on the ABXⁱ. I'm happy you noticed a difference.   You could also try taking 1/2 of the Azith (if you have tablets, not capsules).  Then, when you are tolerating these, start working toward the full dosage amounts.

I actually started with the doxyⁱ every other day until I was able to tolerate it (I was that incapacitated) and each week alternated the days until I was able to take 100 every day. Then my goal was to get to 200 mg/ day.  When I added the Azith, I started with 1/2 of a 250 mg. tablet (can't divide the capsules ;)

Some  believe you should just "soldier on", but we have to do what out bodies can handle, especially since you have to work.

I have never had elevated liver enzymes, (and we monitor with blood work)  but I do have very low good and bad cholesterolⁱ (which can be just as detrimental as having high cholesterol).  My doc doesn't believe my liver "processes"  normally.  So if you haven't had your liver function tested it is definitely on the list of tests recommended.

I am curious why you think Vit C would have an effect on your adrenals and also am wondering what type of symptoms you are having that you interpret as low cortisol.  Extreme Cortisol/adrenal issues have been a result of this treatment for me that I have had to address.  It is much better now than it was but I still have to take the Cortef and still have some problems.   Are you still using the Isocort?  Did you ever do the saliva test, or just the tests recommended (flashlight, etc.) on the STTM site?   A good support that was prescribed to me (before I started CAP) is Adapt by InterPlexus and it worked quite well (this was, of course before  I started ABXⁱ).

Perhaps it may be better if you implemented the supplements  recommended by Dr. Stratton on the Recommended Supplement List  (Those in yellow are considered priority for protection from treatment toxicity.) ...... instead of picking and choosing certain ones? .....JMO.

I hope backing down will help you continue on.  Please keep us posted.

JeanneRoz

 

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's

Hey Bio,

My DOCTOR was reccommened by this site and he treats CFSⁱ and fibro patients exclusivly. (However disclaimer, he prescribes his own version of CAPⁱ, and doesn't follow this sites protocol.) He is more experimental and the Ursodiol is not part of the protocol at CPNHELP.ORG. He prescribed the Ursodiol. It really helps me manage constipation and toxicity for me(don't know if it works for everybody and use under the supervision of your own DOC).BUt for me, GOOD STUFF... the ABXⁱ were making me all constipated and sick feeling. the Ursodiol helps with that big time for me. It does something to thin the bile. May be worth a try.....I take TWO (300mg) Ursodiol  capsules twice a day with meals. SOrry I'm not more scientific, but just can't remember anything but the generalizations of things.

Mark

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CPNⁱ off the charts, EBVⁱ, Chronic fatigue 20+ yrs, , tinittus, Orthostatic intolerance, adrenal fatigue, excitotoxicty, porphyriaⁱ, anxiety, depression, doxyⁱ, AMOX, and FLAGYLⁱ since JAN 2009,  

Bio, Here is a thought for consideration, you can monitor your liver enzymes through Life Extention Foundation Labs for a very resonable fee but you do have to become a member which is about $75/yr. They have an extensive panel which also includes the liver enzymes.   

The specimen can be drawn at a local Labcorp facility if there is one near you or at any local lab for a draw fee which is the situation for me.  LEF Lab can send you a test kit for the draw and you can ship it off yourself and have the results emailed or snailmailed or both to yourself. I did this once last summer.  Now I am on monthly testing while I am on intermittent, which is actually more frequently now that my levels have dropped than when I was on full time full CAPⁱ with elevations.   Once you demonstrate any liver enzyme elevations while on abxⁱ, it can cause providers to be less supportive of continuing long term abxⁱ therapy, may be seen as a liability aspect in your treatment.  My thyroid and adrenals are amazingly in balance however my liver is my organ that needs supports.  Hopefully your liver is of a less sensitive nature than mine.

For liver support,  I am now on Urosidiol to address this, as others here have begun to do, to promote bile flow.  I also have been recommended to take Silymarin Extract, NOW has a 150mg and a 300mg capsule.  I trialed it at a recommended higher dosage for several months but it did not shift my levels.  Currently I am back to 300mg/day.

I am curious about the ox bile supplement and wonder how it compares to the Urosidiol which is a prescription item.  Is it available from Iherb?  Or where?

How are your headache symptoms now that you have dropped back to 100mg Doxyⁱ/day which is the minimum amount that you would want to take that, less is a set up for resistance.   Glad that you hung in there.   Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Mark,  There are weight to dose recommendations for the use of Ursodiol, just to point that out here in the discussion for consideration of others reading your post, the amount could vary for a person with less body mass! I won't be so imprudent as to ask how much you weigh !  Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Louise - I'm torn about Vitamin C. Adrenal fatigue sites will say that the adrenals use vitamin C and that's the first thing to be depleted in times of stress. But there are studied that show Vitamin C has a cortisol lowering effect (The adrenals may be using the C to reduce excess cortisol). Thirdly I've read about people who have become allergic to Vitamin C (not sure if the form of C is the issue). I've tried buffered and Ester C as well as BioFlavinoids alone. C is not the only supplement to deplete my cortisol. L-Glutamate is well known by bodybuilders to eat up cortisol. Lately the sulfurs, Acetyl-L Carnitine, Phosphatidyl Serine, I could go on....

I know when I'm low. I've had enough trial and error to know when. First symptoms is I can't get out of bed in the morning. I response to HC drops and/or Isocort. When I can get to the gym I can literally feel it draining out of me when I push too hard with weights.

I am currently a member of Life extension and it was great for a while because there was a Labcorp literally across the street. But it closed July of last year. I'll just have my doc do any tests for now.

I did the Saliva test (4x sample per day). My "morning response" was high, then low, below low, then low for the 4 samples. The 2 lows were as low as they could go before being out of range. This was a couple of years ago.

I've found the Ox bile helps prevent a large bile dump when I need to take my oils (EFA, E, EPO, CLO, EPA, A, D3, etc). Otherwise sometimes I get some bad reflux. The worse was when I broke my thumb playing football with my son. The pain was bad but the immense toxic bile dump was overwhelming. I was wondering why that happened. It's happened since due to similar physical trauma. I take 6-8 charcoal caps during those occasions.

Why the charcoal gives me headaches, I theorize because it's removing something in my gut I need that I'm already low on. Who knows what the bacterial chemical factories are producing in our guts.

I also have other supplementsⁱ that are supposed to help the body produce bile like Guggulsterones, don't find that they have helped much.

I've seen the supplement chart. I'm opposed to taking a shotgun approach to supplementsⁱ. I know everything on the list is supposed to help BUT there are other effects in the body for these substances. Many are involved in Phase I and Phase II liver detoxification. I now believe that bringing these two phases into balance with each other is crucial to recovery.

Please see this link. Once of the best texts I've found on Liver detox. (The PDF is muchmore nicely formatted)

Cleansing of the Human Body (pdf)

Cleansing of the Humab Body (HTML)

 

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Louise - forgot to mention the headaches have subsided. I think it was due to some type of pressure inside/near the inner ear. The other two times I mentioned getting ear problems were right after I had a cold/flu during high stress periods. I believe my cortisol levels were very low also during those other times. Supplementing with Isocort seems to have helped as well as backing off.

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Hi Bio, Jeanneroz was the one with the Vit C question for you and those relating to he adrenal hormonal levels.   And also she made the suggestion to look at the supplement chart.

My post was related to the liver enzyme testing.    I find that if I take most of my oils and many supplementsⁱ with my later meals of the day I have less G.I. effects from taking them.  

When you talk about a bile dump what is the effect or sensation that you are wanting to avoid, it is unclear to me from your post what you are trying to describe? 

I'm glad to know your headache situation has calmed down.    Louise

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Louise,

The fiber in the food is probably helping bind some of the bile. Have you ever taken just oils and felt sick (not with food)? The bile is sometimes very toxic in chronically ill people. The more that gets dumped and not bound will wreak havoc in the gut.

If I take my regular oils without the ox bile I will many times get a "sick to my stomach" feeling usually along with some reflux burning sensation. On those occasions when I've had a massive bile dump from trauma it's like going from feeling pretty good instantly to extreme nausia. Similar to when you have the stomach flu and are about to vomit. That's when I have to eat the charcoal like candy.

It could be the case that many of our unpleasant symptoms are cause by a continuous intermittent bile flow. I personally can't take charcoal regularly throughout the day because it would rob me of too much. It binds indescriminately and will take the good with the bad.

I once presented the idea that someone could purposely create a bile dump by taking an amount of oil (TBS of olive oil perhaps) followed within a few minutes by charcoal to bind to the bile and make sure none of it causes a gut reaction or gets reabsorbed. I think a daily purging could be beneficial if the timing was right.

 

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Bio, Thanks I was wondering if you were talking about nausea in your complaints but did not want to assume.

I take many of my supplementsⁱ with my meals not on a fasting stomach.    Oils do not seem to stimulate my gall bladder but chicken fat is very likely to do so and I do not eat any chicken skin which is very fatty.   Also cream in coffee can set my gall bladder to contracting as well, however butter does not cause as much of a response.

Why do you want to get the liver enzyme situation into the mix?  If your MD is not LLMD then anything more than 2xnorm may become an issue from his perspective and cause you to be denied tx.    If your look in the archives here, many do not test these for that reason.    If you have CPnⁱ in the liver and not everyone does, but if you do then there will be apoptosisⁱ there and elevations, another good just in case reason to ease into treatment so that this can happen in a slow to moderate progression over time.     Liver enzyme elevations of mild to moderate level, are often asymptomatic so may not be related to your nausea at all.   If you have not had the lab work done prior to starting you do not know your baseline.    Porphyria can cause nausea and stomach pain as s part of it's symptom, I assume you have read many of the past posts here regarding it as well as the info available in the tabs at the top of the pages. 

A small amount of fat is used to create bile flow when taking cholestyramine so that there is bile for it to work on, ie. to remove the fatty toxin substances, the fatty porphyrins and the fatty neuroⁱ-toxins from bacterial breakdown so this concept that you are suggesting with charcoal would be very similar.   Fats are better than oils as there receptors in the stomach that send the message to the Gall Bladder to contract and expell ble for it's digestion.

 

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Louise,

Thanks for the info on liver testing. I wasn't aware the Docs woud remove the abxⁱ. I'm not sure if mine would or not. I think he thinks I now what I'm doing. I know liver testing is supposed to be important in taking several drugs. Sounds like you're saying if you think you feel bad enough to need liver testing them just back off a little and see if that helps.

Yesterday was another Zithⁱ day and left me wiped out and this morning feel like a truck hit me. I may have to back off that also. Maybe 1/2 tablet as you suggest.

Can you tell me how you take the cholestramine? Does it work in the gut? or the blood? do you know?

 

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103

Bio,  from what I have read, and my understanding,  I do not believe  the Vit C could be depleting your adrenals.  Your statement: "But there are studied that show Vitamin C has a cortisol lowering effect (The adrenals may be using the C to reduce excess cortisol) " conflicts with the information below.  If one is low on Vit C, then yes adrenals will be affected and Cortisol levels will suffer. 

Adrenal fatigue sufferers invariably have inadequate supply of many key nutrients, including vitamin C, pantothenic acid, and pantethine. Out of these, sub-clinical vitamin C deficiency is the most prevalent. While no outward symptom of scurvy is seen as in clinical vitamin C deficiency, the body's need and appetite for vitamin C go up tremendously when the adrenals are weak. The highest concentration of vitamin C in the body is in the adrenals, where it is needed the most. Vitamin C helps the body repair and maintains connective tissue. It is a key catalyst of adrenal hormone production, including cortisol. 

In time of stress and adrenal fatigue, the body's requirement for vitamin C can easy go up 10 to 20 fold or more. Having a sufficient level of vitamin C in the body is therefore critical to help the adrenals make anti-inflammatory hormones including cortisol, prevent catabolic state from worsening, boost immuneⁱ function to fight infection, prevent heart diseaseⁱ, overcome opportunistic infectionsⁱ, and neutralize systemic toxins from environmental and periodontal diseasesⁱ. Proper vitamin C fortification should therefore be a cornerstone of any adrenal recovery program and any pre-surgery setting where immune optimization is desired. Because there is no blood thinning effect, prophylactic vitamin C can be used safely prior to surgery.

From this information, perhaps you may not be getting enough Vit. C. (if this is, in fact what is going on) .  My adrenal problems started about 5 months into treatment (while only on doxyⁱ and azith).  Completely shut me down, part of the transport chair scenario,  caused severe orthostatic hypotension, to name a fewe.  Just going by my experience and how I am being treated.

There are several phases of adrenal fatigue (your saliva test  2 yrs ago should have indicated which phase you were at).  It’s soooo important to adress the adrenals when symptoms start happening (on this protocol).  I hope you are able to figure out what it is you need to do.  Isocort is something which  is normally to be  taken everyday to build, support and assit healing  the adrenals-- not on an "as needed basis" because this will stress them (stopping and starting it only when one thinks they need it).   

You are fortunate to have enough cortisol to be funtional and get you to the gym,! 

JeanneRoz  

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's

Bio

Azithromycin STILL hits me "like a truck" after all this time BUT... even on four abxⁱ and caffeine, I can function at a high level.  Two days ago, I took our diesel pickup and our sixteen foot trailer on a trip 150 miles each way up the coast to get some wonderful hay.  All the time I have been on abxⁱ, I have managed to get our feed but it has been very careful planning - so that trips came between pulses.  This time i took Azith and THREE caffeine pills, Rifampin, Doxyⁱ, and Amoxicillinⁱ. 

What I am trying to say is - it gets better.  It may take a long, long time - but if you are hit like that, be thankful.  It means that you are getting something done. 

Rica

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3/9 Symptoms returning. Began 5 abxⁱ protocol 5/9 Rifampin 600, Amoxicillinⁱ 1000, Doxyⁱ 200, MWF Azith 250, flagylⁱ 1000. Caffeine pills with AM abxⁱ Began Sept 04 PPMSⁱ EDSSⁱ 6.7 Now good days EDSS 1

Bio, I was not the one who suggested that you could back off to 1/2 azithro tablet, I believe that it was in Jeanneroz's post earlier in this discussion.   I did not take azithro and do not know the lowest dosage that is safely taken of that medication.   I have taken Roxi and Clarithromycin.  Go back and re-read all of the getting started and CPnⁱ handbook data on working up medications, in particular Azithromycin, for the answer to your question.

On the following page I find reference to adding Azithro 250mg once a week to start and build up as tolerated.  So you could take it for example on Friday evenings once a week for a start.  You would have the weekend off before going back to work (unless you work weekends).

http://www.cpnhelp.org/summary_chart_of_differen 

 

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6-07WheldonCAP CFS20+yr

(11-29-07 started Cholestyramine HS PRNⁱ x 7d for porphyrin+endotoxinsⁱ removal)

Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!

Bio, Re Azith and half dosage... here is one member's  response culled from my post on Azith 2 years ago:

1. You can indeed split the

Submitted by basil on Tue, 2007-05-22 16:05.

1. You can indeed split the azith tablets any way you wish in order to ramp up your doseage.

2. Azithromycin is somewhat unique among the macrolides in that it does not utilize Phase I (P450) liver metabolism, nor does it otherwise inhibit or induce the activation of the liver's P450 functions. To quote one study:

"Azithromycin is mainly eliminated unchanged in the faeces via biliary excretion and transintestinal secretion. Urinary excretion is a minor elimination route: about 6% and an oral dose and 12% of an intravenous dose are recovered unchanged in urine."

The above is important for those of us prone to porphyriaⁱⁱ, since ANY substance, either xenobiotic or intrinsic, that requires Phase I metabolism or otherwise induces P450 activity, can trigger an attack of porphyria.

At any rate, the above means that the body's elimination of zithromax is unlikely to stimulate a porphyria attack.

However, azithromycin-induced apoptosisⁱ of Cpnⁱⁱ-diseased liver cells could release already-accumulated Cpn-induced porphyrins.

Additionally, you could be suffering from immuneⁱⁱ system reactions to the Cpn die-off products.

Finally, I personally have suffered repeated porpyria attacks triggered by CAPⁱⁱ, even though none of the substances I take require Phase I metabolism (and therefore would not be porphyria triggers). My attacks are not simply the result of porphyrin release from liver-cell apoptosis, but full blown, out-of-control, continuous-porphrin production attacks that can be stopped only by taking large amounts of gluecose and cimetidine (a P450 inhibitor). Thus for me, somehow, the consequences of the CAP itself can induce porphyria attacks, beyond simple porphyrin dumping from killed liver cells.

Bottom line, however, is that CAP can make one EXTREMLY ill for a variety of reasons, particularly if one's liver is heavily infected, and therefore it is imperative that one build up the CAP antibioticsⁱⁱ slow enough that the illness doesn't become totally debilitating.

The only good news is that because it is NOT normal for these kinds of antibiotics to make one so ill, such illness can be considered to be an indicator of Cpn infection. basil.

I split the tablets, 125 mg will not cause resistance.   Yes, there is the documented  protocol way but some of us have had to work around it while not causing resistance (with the ultimate goal being consistent and working up to the full dosage). 

Splitting the tablets worked for me and if that's what you need to do to endure perhaps you should give it a try. 

JeanneRoz 

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JeanneRoz ~ DXⁱ'd w/ CPNⁱ 4/2007; 6/07 -"officially" dx'd w/CFIDSⁱ/FM; also: HHV6, EBVⁱ, IBSⁱ-C, 100 Doxyⁱ:BIDⁱ;250 AzithM/W/F; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 units, Supp's

JeanneRoz - I've got my Canary Club Report from 9/9/2006 in front of me...

The numbers were 28, 5, 2, 2

DHEAⁱ Was 3 (3-10ng/ml)

The Map showed me just outside the top right corner for zone 7 "Adrenal Fatigue".

 

This was very interesting to me:

"Azithromycin is somewhat unique among the macrolides in that it does not utilize Phase I (P450) liver metabolism, nor does it otherwise inhibit or induce the activation of the liver's P450 functions"

 

Rica, Louise - Thanks

 

 

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Doxyⁱ 100mgx2, Azithromycin 250mg MWF, Probiotics: PB8, JarrowDophilus. CFSⁱ since 2003. Last 5+ years lots of the usual research (Depression, Adrenal Fatigue, HPA, Mercury, Candida, Thyroid, etc.). iherb.com $5 coupon code: HAW103