trying new things

Submitted by barefootrunner on Tue, 2011-02-08 23:53
So I have cut back the Doxi to 100 mg once a day and taken out everything else. I also increased my intake of probiotics and am going to try a probiotic with s. boulardii. Its supposed to be really effective for AAD (I am assuming that is why I have diarrhea). I bought activated charcoal today and am going to try that. I also find that sometime around 830-9 pm my heart starts pounding, I become very anxious, and feel nervous. Its physically really uncomfortable. I am assuming all the sx are porphyria and hope that the charcoal will help with it.

I get that heart pounding thing too

For me usually after a nap just as I am waking up 

update ...When I started using the Salt /C Protocol I did not have as much problem with heartpounding 

I think it's becase the high doses of vit c and salt support my adrenals 

 

 

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

I used to get the pounding heart but not so badly that it was uncomfortable. Quite often it started when I went to bed, & it stopped me from sleeping for a while each time. Otherwise no obvious pattern. It lasted for about 12-18 months, then stopped & hasn't returned.

Clare

What do you suppose stopped it Clare?

DAILY:  NAC 2400MG , DHEA sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

I am hoping this will stop soon. Its really unccomfortable and makes it difficult to sleep. I've tried activated charcoal and that has not helped. Tho of all the things I have read that people are struggling with, these are really minor complaints. :-)
Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

Barefootrunner,

how much do you take from s. boulardii on a daily basis? (Supporting the cap)

I think a pharmacy recommended this to me, but i was sceptical since s boulardii is a yeast and they were not able to answer my questions. 

What i`ve read on wikipedia, it seems to be a helpful yeast and i would like to try it also.

Mino 200 mg  / Azithro 250mg M W F / Amoxi 2000 mg / Metro 5 days pulse   CFS/ME Fibromyalgia or whatever you like to call it.

Hi Noah

I have not started taking it yet. I put in Antibiotic Diarrhea into PUBMED and looked at the various tx options for C. difficile since someone had suggested that I might have that. I should get it by tomorrow (I live in a real small town and have to order this kind of stuff from out-of-town). 

Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

This was one of the article abstracts (I'm just cutting and pasting)

"J Infect. 2009 Jun;58(6):403-10. Epub 2009 Apr 5.

Recurrent Clostridium difficile infection: a review of risk factors, treatments, and outcomes.

Johnson S.

Infectious Disease Section, Loyola University Medical Center, Stritch School of Medicine, Maywood, IL 60153, USA. sjohnson@lumc.edu

Abstract

Episodes of recurrent Clostridium difficile infection (CDI) are difficult to treat for several reasons. Foremost, data are lacking to support any particular treatment strategy. In addition, treatment of recurrent episodes is not always successful, and repeated, prolonged treatment is often necessary. Identification of subgroups at risk for recurrent CDI may aid in diagnosing and treating these patients. Two likely mechanistic factors increasing the risk of recurrent CDI are an inadequate immune response to C. difficile toxins and persistent disruption of the normal colonic flora. Important epidemiologic risk factors include advanced age, continuation of other antibiotics, and prolonged hospital stays. Current guidelines recommend that the first recurrent episode be treated with the same agent (i.e., metronidazole or vancomycin) used for the index episode. However, if the first recurrence is characterized as severe, vancomycin should be used. A reasonable strategy for managing a subsequent episode involves tapering followed by pulsed doses of vancomycin. Other potentially effective strategies for recurrent CDI include vancomycin with adjunctive treatments, such as Saccharomyces boulardii, rifaximin "chaser" therapy after vancomycin, nitazoxanide, fecal transplantation, and intravenous immunoglobulin. New treatment agents that are active against C. difficile, but spare critical components of the normal flora, may decrease the incidence of recurrent CDI."

 

Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

I found some contradictory results at pubmed?! With these complicated diseases someone has really to become an expert and to certain degree an experimentator as well since the ordinary physicians are not of great help. Good Luck, i hope the problems will resolve soon!

Mino 200 mg  / Azithro 250mg M W F / Amoxi 2000 mg / Metro 5 days pulse   CFS/ME Fibromyalgia or whatever you like to call it.

Hi barefoot runner.I went onto the s-boulardii but also at the same time Lauricidin and also two tea-spoons of apple cider vinigar and honey each morning.I got this information from a member who also suffered with fibromyalgia.For the heart pounding and anxious feelings which I always got at night I went onto Melatonin and 5HPT and this became a thing of the past.Hope this helps.

sunshinecoast Australia.Fibromyalga suffer recently informed I have CPN started on Doxy 50ml twice a day 21.2.09 

Hi Noah

Yes, experimentation is the name of the game, is it not. There was another blogpost recently which talked about using s. boulardii for avoiding any problems. In any case, it's a probiotic and I figured it probably won't do any harm. 

 

Hi Phaffa, I can't do apple cider vinegar- I just dont do well with drinking that. I am taking melatonin though just before getting into bed. I think i might change the time (take it earlier) and see if it helps. thanks

Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

Azithromycin gave me diarrhea initially.  Too much caffeine in a day will still do it.  I didn't see anywhere a date when you start the CAP but you could back off the azithromycin for now.

My internist recommended pectin for loose bowels.  I haven't tried it because I don't have the issue very often.

The metronizadole will help you avoid c. diff. problems.

Started CAP for Cpn on 11/14/10 - Per my doctor, paused Abx 5/18/13 - NAC, T3, St Johns Wort, B-complex, Vit C, Vit D3 (8,000/day), Vit E, Astragalus, Chlorella, Chelation with Alpha Lipoic Acid. Started Buhner protocal (2nd edition) on 8/30/16.

lleach

the azi is probably still causing me occasional bouts of diarrhea. I started the CAP 12/1.  I stopped the Flagyl which has helped. Stopping another abx feels like I will be sliding back :-(. 

 

 

Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

Clarithromycin has been recommended to some by Dr Stratton.
  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

I have tried many different thrapies for GI pproblems and my physican had my on a nonabsorbed antibiotic called Xifaxin. It clears out abdominal bacteria in the small bowel including clostridium. The GI trach has it's own nervouse system called the Enteric Nervouse Systemt and has been know to cause anxiety if overwhelmed with bad bacteria and fungus.

 

started Wheldon cap 4/21/08 for Cpn, CMV, EBV, CFS. Cap hold 4/09vascultis. Restart 9/09 with Dr.Powell, restore gut, 4000 D3, supplements,  Pos. Bartonella and Babesia, Rifampin 600 mgs and Biaxon 1 gram. 

Horses12, this makes a lot of sense and helps me understand why the anxiety has becoome so much worse. Did you have to do something to get positive bacteria?
Diagnosed with FMS 2003. Currently doing CAP (started 12/1/10), Doxi 100 mg BID, Azithro 250 mg 3x week, last Flagyl pulse 1/23/11 for 5 2 days. 1st Tini pulse (2 tabs 500 mg) on 4/8/11. Following Perfect Health Diet as much as i can.

Was the Xifaxin helpful for your general state of well being?

I to am interested in what you were told to replant as normal flora base after the Xifaxin.

Xifaxin is a new drug to me, since I have not had to address the issue I had not heard of it before thanks for sharing, it may be helpful for some folks reading here.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support