Is This Endotoxin Overload?
Hi All,
I'm kinda a wreck!
I recently upped my INHi dose from 1/4 tab every other day to 1/2 tab to one full tablet every day.(Just completed one week at the one tablet dose every day.) I THOUGHT that all was peachy until the past few days! I am also taking NACi (since January twice a day) & have one Flagyli pulse completed. (several weeks ago)
Over the past few days; I've experienced prolonged flushes with the Niaspan (twice a day). I feel itchy for hours! When I first started taking the Niaspan; the flushes were pretty intense. Then they subsided, left completely & then returned in mild form. Now the flushes seem to be prolonged instead of the quickies I was experiencing...The flush lasts for hours now instead of a half an hour!
I also felt extremely fluish yesterday. This past week has been awful sleepwise...I used to be very tired at bedtime & would fall asleep quickly. Now I find that after being fatigued all day; I almost feel wired at bedtime! Very odd for me! I have had difficulty falling asleep at night this past week. I've noticed that I'm feeling a bit anxious & still feel the Niaspan flush at bedtime. (I take the Niaspan at dinner.)
Now this morning I woke up with EXTREME vertigo/ nausea! It took hours to go away!
What is going on?!! Any guesses? Am I experiencing Endotoxini overload? Do these symptoms sound familiar to anyone? In addition to the above symptoms; I've also felt more arthritis joint pain. (Of course, it has been raining for over a month straight here!)
Any ideas? My gut feeling tells me that I need to back off on the INH, even though I thought I was tolerating it fine. Maybe I even need to back off on the Niaspan? I will call Dr.Powell's office for advice & have an appointment there in a week & a half...
Just thought you all might have some words of wisdom! Help!
P.S. My eyes are red, itchy & look terrible! Is this also from die-off?
Thanks,
Annie
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I think eyes are the sign of diyng off, I had this problem also. And it has gone..
"Now I find that after being fatigued all day; I almost feel wired at bedtime!" This is typical for me also.
Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years
Annie- Definitely consult with Dr. Powell's office. Sounds like too much niacini to me. I get flushes periodically from heating up, like exercise and the like, but you shouldn't be experiencing hours of flush. May be inducing too much histamine. I take my evening dose with the vitamin E (you should be taking both together) at bedtime rather than dinner. You may be getting too much die-off right at bedtime, which interferes with sleep.
Did you move up to the whole INHi on Dr. Powell's recommendation? Given your sensitivity (as stated in previous posts) it may be that you just moved too fast from the 1/4 dose up to the whole dose. I've stayed at 1/2 tablet, which with the Niaspan seems to be quite adequate for me. The INH seems also to get at Cpni in the joints very well, so the increased arthritusi symptoms in joints could be from the jump in your dose.
On CAPi's protocol for Cpn in CFSi/FMSi since December 2004.
Currently: 150mg INH, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
when taking niacini (b-3) one should not take it with food . If your taking it with food in can cause more of a flush . I have experimented with this and found it to be true.
chuck
From the Niaspan website:
How to Take NIASPANOn CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
Thank you, thank you for your comments!
Today is a better day (As you can tell from my post above- yesterday was an Endotoxini Day from Hell!) & I've just got off the phone with Michael @ Dr. Powell's office.
Yup, I'm overdoing it on the INHi! I am to stay at my 1/4 tab dose...Guess I thought things were OK when indeed they were not! Mike said the combo of the increase in INH & the Niaspan was probably causing too much Endotoxin release. The sleep problems, nighttime anxiety/ body itchiness are all indicative of the Endotoxinsi.
He assured me that this condition is not "dangerous"...just annoying/ uncomfortable! This too shall pass. I will do an injection of Magnesium today as Michael said Magnesium helps. I already take a huge amount of oral Magnesium. Will also keep more Naproxen Sodium (Aleve) onboard if my stomach tolerates.
I'm delaying my Flagyli pulse # 2 until things settle down.
I promise to be a compliant Cpner from here on out & not try to increase my INH too quickly!
BTW, I was instructed to take my Niaspan with breakfast & dinner...probably because my chronic Gastritis is a real challenge. The only meds/ supps I take on an empty stomach are INH, T3 & the charcoal. (Not currently taking T3 due to side effects!)
As I said before in a post...I AM the Queen of Weird Reactions! SUPER sensitive to meds. I have to keep reminding myself of this! And keep repeating the Cpn mantra, "GO SLOW..."!
Your Fellow Itchy, Flushed, Red-eyed, Endotoxin-Overloaded Cpner,
Annie
Annie- The Niaspan site says take it with crackers or the like, ie at least something to avoid stomach irritation. I find that usually I'm fine, but for some reason even with light stuff it irritates my stomach recently. May be just current sensitivity. Glad you figured it out.
On CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
Wow, this entire Cpni treatment experience has been really fascinating!!! (And a wild ride!)
I think that I could feel the Endotoxini load decreasing over the past 24 hours! My awful symptoms of Sunday subsided as I took no INHi yesterday A.M. & didn't take the Niaspan Sunday P.M. or Monday A.M...I did a Magnesium injection as well as a B12 injection yesterday. As the day moved along; I felt less of the flushy feeling from the Niaspan...I'm still feeling slightly itchy all over, but it's better. Last night I fell asleep quickly & slept all night. In general; I'm feeling more "normal" (Ha-ha!)
I've got to be honest & say that I was VERY skeptical when I began this treatment. Knowing that blood work isn't a reliable indication of current Cpn infection (even tho' I tested positive for it); I was hesitant to ingest the massive amounts of supps & antibioticsi each day. It downright freaked me out! I counted once & I was taking 70 pills a day. Yikes!
Now, after reacting to the various stages of treatment; I can see that there truly IS a need to wage war on this and/or other underlying infectionsi. As others have stated...if we did NOT have an infection; these treatments would not cause such strong reactions. I started reacting with fluish symptoms, and profound fatigue right from the beginning of my treatment! (When I was only taking supps & NACi!) Adding in INH at a mini dose & then Flagyli have brought even more reactions.
My overdoing it on the INH last week REALLY showed me there is definitely something invading my body which needs to be wiped out! The challenge for each one of us & our Dr's is knowing how to fight the enemy without becoming too badly wounded in action. We are all so unique that this balancing of treatment & reactions is an enormous (almost daily) job! I'm amazed that given our cognitive & physical impairments; we are able to figure out any of it! But we do, with the help of each other & our Dr's...
Thank you all for being here & to Jim...A HUGE thanks for this site!
Blessings & Hugs,
Annie
Annie- You are welcome. I'm benefiting as much as anyone with the community we've formed.
One note: Positive test for Cpni is accurate. It's the negative tests that are the problem. If you have a positive test, as Dr. Stratton has said, you know you have Cpn and justifying treatment is a no brainer. If you have a negative test, you have to go off of symptoms and disease.
On CAPi's protocol for Cpn in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
O.K., now I'm confused, Jim!...From what I've read & been told at Dr.P's; the positive blood tests are only indicative of an exposure at some point in your life to Cpni. I was told that the testing does not accurately prove a current or chronic Cpn infection. I understand that some feel the DNA PCRi testing is fairly accurate, but even that isn't 100 %.
My testing through Quest Lab, which sends the Cpn tests to Nichols Institute, was looking for CHL Pneumoniae Igm, IgG & IgAi. I was also tested for Mycoplasma Pneumoniae AB IgG & IgM. These tests are antigen tests, not the DNA PCR tests, right? I tested positive for the M. Pneumoniae AB IgG (0.99=Equivocal range) & positive on the CHL Pneumoniae IgG (1:512) & IgA (1:64).
Anyway, I guess it doesn't really matter because as I said; I am now more convinced that I truly DO feel the legitimate need for continuing with the treatment. It still freaks me out at times...It's scarey being part of experimental treatments. But the alternatives are not acceptable to me either! I've had it with years of trying to simply mask symptoms & experiencing disappointing failures of "treatments". I actually had a Dr. at Stanford tell me to basically give up pursuing treatment & to "accept the cards you've been dealt with"!
Thanks again for your support!
Annie
Sorry about that. Don't mean to add to the confusion. I'll not comment further at this point, as my typing hand got banged up demonstrating skateboard technique to my daughter! Perhaps a more able handed and brained person can clarify this further.
On CAPi's protocol for Cpni in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
Hi All,
Is there anyone here who is knowledgeable re: the Lab testingi for Cpni? At one of my appointments with Michael, P.A. @ Dr. Powell's, we discussed this. He told me that Cpn results were not a good barometer of the severity of one's infectionsi or an indication of recovery. Treatment for Cpn is based more on symptoms & reactions rather than blood work.
It seems that this could be likened to testing for Tuberculosis. I test positive for TB on both types of TB skin tests. My X-Rays have always been clear. I've never had active TB disease. I was probably exposed to it when I worked in convalescent hospitals starting in my teens. Back then; there were no universal precautions...We never wore masks or used gloves! (UGH!)
Anyway, my point is this...It is my understanding that we can be exposed to these bacteria at some point in our lives, yet not ever develop acute or chronic infections. Not that I'm doubting that we have chronic Cpn! My strong reactions to treatment are proof that something is going on.
I'm just curious why we are even tested for Cpn!...Have I missed something?
Thanks for any info.
Annie
Cpni testing isn't necessary, if you feel you fit the criteria to treat empirically. Unfortunately, most doctors don't want to treat for cpn infection, much less believe cpn infection is what causes these myraid diseasesi, so they rely on tests they can point at. If you actually test positive, you're way ahead of the game, because doctors unfamiliar with the protocol like to have SOMETHING to point at when they go 'off the grid', so to speak, and prescribe off-label. It's often a game of 'cover your a--- (ahem)' and that's what most have been taught to do. If you have the luxury of time or money and can get to the few locations which test with Vanderbilt University's methods, then go for it! The problem is, once we're cured, we'll have nothing to show for it except our health, so it would be nice to have tests to look back at. The 'scientific' community will call us all flukes or hysterics, regardless.
IThe 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
*******
True MacK, that is...... until we outnumber them.
Wheldon Protocol for rrmsi since Oct '05. Added LDN 4.5mg qhs Oct '07. All supp's. Positive IGGi's for Lyme Disease,Babesia, & Erlichiosis Sept. 2008. Currently: Mepron 750mg bid and Azithromycin 250mg qdi for Babesia.
Annie- Read through this page of our site to get an expert's description of the testing problem:
http://www.cpnhelp.org/?q=node/68
On CAPi's protocol for Cpn in CFSi/FMSi since December 2004.
Currently: 150mg INHi, Doxyi/Zithi, Tinii pulses
"I really didn't say everything I said." Yogi Berra
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
Thank you for your comments...I suppose I should have started a different post about this testing issue! Oh well...
I read the interview with the anonymous, expert Dr. It reaffirmed what I had been told about serological testing . Yes, most people by their mid-life will test positive for exposure to Cpni as shown by a positive IgGi test. The Dr. states that a positive serological test can not distinguish between an asymptomatic person and a symptomatic person.
The most sensitive Cpn testing (still not completely reliable) is the reverse transcriptase PCRi testing for messanger RNA produced by the Cpn infected cells. This test is "not commercially available". I'm guessing that it is only done at the Research facility (ies)?
So, until they are able to come up with a more accurate & accessible test; Dr's who are willing to treat Cpn with CAPi rely on their experience & our symptomology. This is what I thought was the case...
I still don't understand why they even test us for the Cpn! If the Dr's are treating people with negative serologyi; then why do the blood work?! Oh well...I'll ask my Dr. this question at my next visit!
Thanks to all for your responses. I have learned so much from all of you. The support here is wonderful, even for newbies. It helps knowing that I am not alone in this treatment protocol.
Annie