Cpnhelp.org

Garcia - What have you tried in the way of adrenal support/rebuilding so far ?  Have you had any adrenal testing done?  Adrenal saliva testing?

This is an area that I have dealt with myself and for my husband.  We saw a special doctor for it.

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

Hi Daisy,
by way of Adrenal support I've tried:
Adrenal cortex extract, hydrocortisone, prednisone, pregnenolone,  dheai,  ashwaghanda,  siberian ginseng, american ginseng,  licorice,  B5, Vitamin C,  Niacini,  Iodoral, sauna and probably a whole heap more which I can't remember. Some of those help. Some make me worse. Nothing improves me fundamentally.

I've had saliva adrenal testing done once (before I caught cpni) but results came back "normal", presumably because I had adjusted my lifestyle to my adrenals (waking up late, not stressing myself etc.). In any case I would have described my adrenal fatigue as "moderate" back then.

I haven't had any testing done since cpn, but to be honest I'm not sure tell me anything new as my problem is so severe.

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Hunter: Don't think - experiment

If you feel great on tinii ... what do you think would happen if you just stayed on it? My doc actually told me I don't need to pulse, that I could take flagyli continuously if I wanted to and could tolerate it, but I can't tolerate it for long. But if I felt great on it I'd just try staying on it.

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GFAi - asthmai, sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli pulse started June 30, '08. Added Doxyi 200mg/day Aug 16.

Garcia - Boy - you really have tried a lot of things that do seem to help some.

In thinking of this, it might be prudent at this point to take a step back and see if you can determine more about what is actually wrong with your adrenals.

You could consider

retesting adrenal function via saliva - using at least 4 measurements during a 24 hour period - this would give you more information perhaps - infection has a certain adrenal curve pattern, depletion has another pattern, etc...

A company that is good in 24 hour adrenal saliva curve measurement is Diagnosis-Tech. 

It could be that you need different supplementation at different times of the day - this is what it took for both my husband and I - we had to pin point down the times of day of the problem, the nature of the problem (due to pattern of curve) and then supplement from there

also - I have found that you need to consistently supplement for quiet a while before you get benefit from adrenal healing - deep adrenal healing

wonder if there is an adrenal specialist anywhere near you - I found one in Atlanta and he did quiet a bit to help both me and my husband with this...

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

How about trying the pyruvate protocol? The whole point of it is avoiding the severe reactions that come from pulses.

Norman  are you talking about taking the pyruvate after dosing with abxi only? 

That is what I am doing to improve my perhaps I should call it energy expenditure endurance.  To say exercise would be vastly overstating it.

Garcia and Daisy   I to had my saliva testing done by the lab that Daisy mentions above.

My MD suggested phosphatidyl Serine Complex formula to smooth out my mostly elevated cortisol yet sometimes normal level pattern.     Part of my sleep pattern disturbance results from this factor according to him.

I will likely get this retested it was not that expensive considering the price of many tests.

Hope you can get this sorted out soon.     Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Garcia,

I would definitely suggest testing the adrenals. When I began using antibioticsi I immediately thought I was beginning to create adrenal insufficiency as the die off and what I now know to be porphyriai symptoms made me feel exactly like (or even worse than) I did when I ended up in the hospital with Secondary Addison's.

My point is, you may FEEL like it's your adrenals crashing when it might be something else that wouldn't be treatable with adrenal support. It seems to me that if you haven't had much help from the adrenal supplementsi you've taken, you might be suffering inflammatory and endotoxini symptoms and the toxin moppers might do you more good.

I like Norman's suggestion of using the pyruvate protocol to help eliminate the excess burden from the pulsing.

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

No, I'm talking about taking pyruvate before antibioticsi, as per this web page.

You say you "get a significant reaction" - what does this means?  you feel better, you think it is working, and then bumm, down the road again?  or as I say down the roller coaster at high speed?  and then you feel everything was a "waiste" 'cause your body cannot really take it?

I guess something in the coctail is not working, or the whole coctail.  I agree that you must revise everything that is going on, because, if it is your adrenal system, why the medications for it doesn't help at all?  start from scratch scrutinizing everything!

I must say that cimetidine has been very good for me - Tagamet- over the counter, to minimize the reaction; and I have been taking the Aloe Vera - I don't know, perhaps just a week ago? - and my swelling in the hands and body is going down!!! down like the roller coaster too!  I guess I even lost a pound or two, amazing!!! My hands are NORMAL!!!

So, I bet there are things that might work for you, and you really need to explore them specially if your condition is so dificult right now.  I think your should also read the "discusion" about the vitamin D3 and perhaps consider  taking it for the inflamation...

Ideas?  get other medicines, other Doctors, other testings...  anything, everything!

Really good luck, get better!

 

Maria P. 

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God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

MariaPatri, Good morning, would you be willing to post a revised and up to date signature beyond your login name.   It would really help us here who respond to posts to know what you are taking for treatment, particularly what antibiotic protocol you might be on.  Thanks for considering to help us out by doing a signature.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Hi Garcia, I am going to risk wrath here in support of some of the above suggestion which I would translate if applied to myself as:

Suspend my state of attribution regarding what is causing what symptom, and I would start again with a basic moderate Wheldon CAPi and all recommended supplementsi.

Once I attribute something to some cause or other I limit my ability to take a look at the situation for other angles and perspectives.   I too go up and down feeling unable to very able to and then another round again just when I think I am stronger and clearer and etc, etc, etc. 

I have watched as you have gotten very aggressive with your protocol.  That approach would put me down on the floor and I wonder what is the rush?  Can we rush it, should we if we can walk and function and have intact neurofunctions surge ahead this way?  Some say no, some say yes.  I could endure it if I had a caretaker and no need to finish off what life projects that have been held in suspension fo the last 14 months since starting CAP I guess.

I know I was quite reactive to you early in my participation on this forum.  Really you were just trying to be helpful and I felt it as criticism.  Clearly it was full blown porphorin overload and bless Jim for getting it and and other's that tolerated my flairs.  This is not an easy or quick course and much we cannot control perhaps after a life that we had managed very well.

So I am asking for your tolerance should you feel reactive to my post.  I am being a little pushy here is saying in agreement with much of what has been suggested above.  Get your adrenals evaluated before making assumptions about their function based on distant past information or purely on subjective symptoms.

Peace and Blessing,

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Thanks Norman. I was thinking the same thing. Though I'm hesitant to jump from an experimental protocol to an even more experimental protocol, I guess I don't have much choice. Its certainly the next logical thing to try though.

I need a cheap source of pyruvate powder which will ship to the UK. Any suggestions? The cheapest I can find is $30 for 85 grams (source naturals).

 

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Hunter: Don't think - experiment

Calcium Pyruvate supplement in powder capsule form is available through www.wholehealth.com check it out.  I is packaged under the wholehealth label - each capsule is 750 mg.

Louise

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Louise  CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Thanks Louise, I've made an order from them. Its a lot cheaper than the other places I've found.

Thanks everyone for the suggestions.

I'll take a saliva test at some point, just to confirm my suspicions.

My main problem is that either I get zero reaction from pulses (i.e. no endotoxini, no porphyriai, no noticable progress), or I get an overwhelming inflammatory response. This depends largely on what other stuff I'm taking. In particular the dosage of vitamin Di regulates response to pulses, low doses (e.g. 2000IU) meaning there is little or no immunei response. Higher doses (e.g. 6000IU) meaning there is too much immune response.

You would think that it was simply a matter of finding the right balance, but its not so easy. I think of pulsing as like pulling a brick with a piece of elastic. Because there is a delay between action and response what happens is either you pull and nothing happens, or you pull harder, then whack - the brick hits you in the face!

It seems its the HSP60 which is the most inflammatory endotoxin produced by cpni, and this is mostly expressed in the cryptic formi. This explains why pulses are so much harder for me than the bacteriostatics ever were. Also, as I've found, its easy to do long pulses when you have an under-reactive immune system (and aren't taking much vitamin D), because you won't get much die-off. But it defeats the purpose of the pulse and the CAPi.

I think Norman's suggestion of trying the Pyruvate protocol is the most logical one at this point in time. I'm still worried whether its possible to completely erradicate a cpn infection using that protocol, or whether the results will dry up at a certain point in time. Either way at least it buys me some time away from pulses.

garcia.

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Hunter: Don't think - experiment

Garcia,

Just because you feel like nothing is happening it doesn't mean that it isn't!  Let me explain...

In the past, I had numerous discussions with holistic healthcare pros.  They always used supplementsi like we use here for support and detoxing along with antimicrobial treatments for their patients.  (ie; rife machine, citricidal, etc)  

One conversation I had was about how would you know you're experiencing herx if you don't feel absolutely lousy as I was told was necessary at "the other site" I was at where folks are told the more they suffer, the better it means their immunei system is fighting off the infection.  (no pain, no gain concept) 

Jim helped me understand how just because someone might be feeling absolute lousy during treatment doesn't necessarily mean (usually it doesn't) that they are eradicating more of the infection.  Discomfort doesn't always mean someone's doing what is necessary or that they're even going in the right direction, which was my case, IMOi, in hindsight.  (prob weakening the immune system, not getting it to work better)  

So, when I read your last post, I realized that you sound like you're equating how horrid you feel with how well the CAPi is working, like I was taught before finding this site and the porphyrin measures used here.  Maybe you don't need to take so much D because maybe you're making your body work harder than it can tolerate and that might be better for you in the long run... going slower or with less pain might actually be helping you heal without as much inflammationi due to cytokinei release, apoptosisi, etc.  This all stimulates the adrenals more which can offset the good effects of CAP.

Think of it this way for a moment... when we are so used to feeling sick all of the time, sometimes we feel it necessary to feel even worse in order to believe something is working.  Something I was told as a little girl when getting my hair done and I'd be in tears... (I'm sure others can relate) "you must suffer to be beautiful" which isn't always the case.  I learned that as I got older and did my own hair.  If I took my time, I could accomplish the same thing without the pain. 

Sometimes, we must just be patient and do all we can to avoid the suffering and trust in the science and remember that pain is not our penence to get well but an indicator for us to make something different happen to avoid discomfort whenever possible. 

I hope you won't feel attacked here as we are all learning by this thread.  Please keep us posted on the adrenal function.  I know I've been feeling absolutely floored at times and now know my adrenals aren't crashing after numerous cortisol stimulation and timed tests although my function is less than optimal.  OTOH, some folks do benefit from Cortef and I've used it in the past.  I feel at the moment I am better off to go slower on the CAP and to ride out the bed hugging times.  

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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 1g/day pulses, Valcyte
Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons

Don't believe everything you think!  

There's nothing that says you actually have to complete pulses, when they start making you feel awful. I've aborted pulses a couple of times. Or, if the reaction is delayed (so that aborting wouldn't work, as you're already done with the pulse anyway when it hits), you could shorten the pulse even before feeling any reactions, or could take one tinidazole pill a day rather than two.

Between vitamin Di and tinidazole, I'd skimp on the tinidazole. Vitamin D is the more natural of the two substances, and it is wider-spectrum, as it boosts the immunei system in general, rather than just killing certain classes of bacteria.

I read your blog for the first time and this is basicly 100% the same what goes with me. I do not expect we will have any abnormalities within the endocrin system. I tested for hormons and they are ok. I think this problem is mainly  neurological somthing goes wrong the within spine, cerebellum and brain. I think we are killing something crucial for the neural activity with pulses which is not being replaced post pulse. I think CPNi is the cause of this fatigue and I realy cannot imagine how anyone can keep a strong neuro-endocrine system while beholding this chronic disease for some years. Maybe we are dealing with some different types of CPN where one is providing a really devastating  neuro-endocrin mechanisms. It is really something to think of because before I became ill I did not have any neuro-adrenal issues... that's why I can hardly imagine anyone without these issues, because they seem to play a predominant role in the list of other symptoms...

Garcia can you tell me how old are you and if you remember when your whole problem started? Have you ever used any steroids or medication before the fatigue entered?

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CFSi, Severe Peripheral neuropathy, Insomnia, Azitromycine/Clarithromycine, Doxycycline 2x100mg, Calcium Pyruvate 6000mg 5 days before pulse, Metronidazol 3x250mg, ACC 2 x 600 mg -  treatment duration: 7 months, Charcoal 1000 mg/day, Chlorella, Cholestyram

Michael do you have any of the symptoms associated with adrenal fatigue? Re-read some of the posts I and others (e.g. Jeanne) have made in some of your threads, e.g. this one: http://www.cpnhelp.org/is_andrenal_fatigue_cause

I never used any steroids or medication before I caught Cpn. A brief potted-history is that I've had CFSi for a number of years now (triggered by an EBVi infection). I would have classed my CFS as moderate. Then I caught CPn and wham, virtually overnight my previously mild adrenal fatigue became severe. Its only after catching Cpn that I felt I needed steroids. Unfortunately they only helped short term. I've only had Cpn for 3 years (been treating for almost 2), and I'm guessing that I have a lower infectious load than many. But treatment-wise I'm one of the worst-off because I simply don't have the adrenal function necessary to tolerate the stress of the CAPi (pulsing in particular). I'm just trying to get-by as best I can for now.

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Hunter: Don't think - experiment