Samento
Hi,
Paula has been taking Samento 15 drops per day since July 2007 recommended by her Lyme doc (she doesn't have lyme, just CPNi). Since going up to the full dose of Samento back in July she has had a terrible mucal discharge down the back of her throat. I am going to ask her doc, who we have an appt. with Thursday, to stop her Samento for a month to see if things improve (mucal wise)
He perscribed her Ivermectin which did halt her symptoms for a couple of weeks (problem was that the mucal discharge sometimes halted anyway for a week or two at a time every now and again anyway before taking Ivermectin). I think I was jumping the gun. :-(
What I need to know from everyone is does anyone else here take Samento and do you have the same reactions that Paula is getting at the minute?
Thanks,
Mark
PS isn't ME/CFSi (CPN) a piece of cr*p!
- Login or register to post comments
- Email this page
- Printer-friendly version
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07. 900mg NACi per day Dec07. Building up on supp. before CAPi.
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.
I think that Elinor takes Samento and possibly a few others, you might try to do a site search for it and see what other people say about it. Maybe send Elinor a private message and she what she has to say.
I've heard lots of our members complaining of heavy mucus production at the beginning of treatment, NACi can have that effect. But Cpni is a respiratory diseasei and that alone is likely to cause a lot of mucus production. Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
illness is not fun, that is for sure.
I still have mucous coming & going, but it was more so in the beginning. I suspect I may not have hit the worst of it yet as I have had many bronchial, pneumonia - respiratory ailments.
Is there a chance this is clearing out Cpni?
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day
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<
Hi,
Talked to doc today and he suggested not stopping Samento and he thinks that the mucal discharge is caused by these damn microfilariael worms we keep hearing about. He has perscribed Ivermectin again as recent studies suggest taking 12mg for 20 days will help. (He is going to the US for a conference on these worms in January with Dr Bill Harvey and said some cpni experts would be there - I forgot to ask who :-)
He has also perscribed Amoxicillini 500mg twice per day to start off with on the CAPi. I did explain that Paula was taking NACi, but he suggested taking this as well - is this correct???
We are planning to complete the course of Ivermectin, then start the Amoxicillin afterwards. In the meantime Paula is increasing her NAC anyway every week, so we will be on 2400mg NAC per day in a couple of weeks if she tollerates it well (which she seems to at the minute, other than small bout of NAC flu for a couple of days everytime she increases the dose).
We will contact the doc again at end of Jan after the conference.
When Paula starts the Amoxicillin, what dose of NAC should she take? - the full 2400mg per day or reduce it, as she would then only be taking it for liver protection?
I asked the doc if he thought Samento was clearing some cpn spores and he thought it might.
UK Carer of bedridden Severe ME/CFS Feb06. CPN dxi. Apr07. Samento 15 drops per day July07. 900mg NAC per day Dec07. Building up on supp. before CAP.
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.
Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 48 pulses NC USA
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Thank you once again everyone on this site for all of your help. I don't know what we would do without you guys!!! :-)
Mark
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07. 900mg NACi per day Dec07. Building up on supp. before CAPi.
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.
Hi Mark,
I used to take Samento, too (prescribed by my Lyme doc, I don't have Lyme, either). Never caused any mucal discharge for me. But, stopped when I pseudo-relapsed, last Feb (Last I checked with Elinor, she stopped taking it, too). I was taking it before I had started antibiotics. But, once I started the ABXi, it was creating far more die-off than my body could handle. I hope that this will not be the case for Paula.
Don't know whether anyone's also mentioned to you that NACi thins mucous (if I recall, D W posted this, recently). Maybe Paula is not producing more mucus, just getting rid of more. I stopped NAC, too. But, then, developed a very dry, irritating cough that I couldn't get rid of. Started the NAC, again, and it's been gone, ever since.
And should probably mention...have never taken the full dose of NAC. Only, 500mgs/2 day. Whenever I take NAC, I hack up little mucus plugs for 2-3 hours, after. When I wasn't taking it, I didn't. I find it all rather interesting.
I wish you both the best.
--Minai
RRMSi, diagnosed 2/04. NAC 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. LDN 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. USAI agree with you Mark, this is a great site and the best of it is that as people get better or those that they care for get better the pool of great people who support others grows. We are all doing this together, some of us are further down the road than others, but the band continues to grow and the volume of noise and laughter gets louder the longer we carry on. So welcome to the band, Mark and Paula. We look forward to the day when Paula is well enough to show her face here, in the meantime just pass on our best wishes. Don't forget to look after yourself. She is very lucky to have you at her side.
Michele (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
I don't take Samento. I took it for a while before starting abxi but have never taken them together. At the moment I'm not taking NACi either as it's been causing a problem but strangely since stopping it my nose has been runny and I'm sneezing a lot.............haven't worked that one out yet!
Elinor ..... from England on CAPi, doxyi/roxi/tini for ME/CFSi/lyme borreliosis, positive Cpni and borrelia. Started Aug05, stopped Jan06, started again Sept 06.
I've just stopped taking samento after 6 months. I don't think it was helping, and I got a bit worried about it. It's an incredibly powerful herb - I took 4 months to get to 6 drops a day.
Best wishes
Jenny
Hi Minai,
the NACi supports our liver. Is it recommended to stop taking it while on the protocol?
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day
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<
Mark, it is difficult to be going down this road to recovery, but better than the alternative.
I want to say how happy I am for you & the other caregivers (you know who you are) that you have chosen to support your loved ones. For those who are married, for better or for worse.... KUDOS. We know how difficult this is.
Our trials & tribulations when we are in eternity with our Lord & Saviour will just be blinks in time.
Merry Christmas
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 1.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 12-3-07 4th pulse 1 X 375 mg 3day
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<
Hi Ruth,
No. Not recommended, as it is part of the protocol. However, there are some who didn't take it before it was (Sarah, Rica). And, there have been a few who stopped taking it, after (such as me, and a few others--the posts would be difficult to search for). Was just posting of my experience for Mark.
Yes, it is liver protective. Have posted here, over the past year, about how it lowered my daughter's liver enzymes after she began taking 500mg/day.
And, here is the link to D W's post about how it thins sputum (see second post down, on this link).
--Minai
RRMSi, diagnosed 2/04. NAC 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. USARica PPMSi EDSS 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 48 pulses NC USA
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Mark and Paula, Wanting to send the two of you Holiday Wishes for the journey of healing that you are on. And I am wondering how you both are doing at this point.
I so respect the care givers that have not turned their backs on their partners, in this age of 50% breakups, I cannot help but think that so many are a result of some sort of Chronic Illness and since learning more and more about the stealth bacterial rhelm of this planet ( just the beginning perhaps) I cannot help but look at people differently now. Like the waitress has a chronic cough and I am thinking CPni in my mind. Of course I don't share it. Occasionally I speak it to my husband as a light passing comment. Since finding my new MD I think I may even eventually see him wanting to be tested but first things first, I need to be a fully functional partner again. And I am making progress. Seven months into the Wheldon CAPi, and my third pulse on the New Year, I feel so blessed to have literally stumbled upon this site on internet search for the Chlamydia Pneumoniae bacterial infection that I was starting treatment for and had little personal information.
I guess I am into a rampage of appreciation here, and I have done it before, but it has been a while, so guess it is time again, in this season that includes appreciation and looking forward from all traditions, it seems timely.
We are also are fast approaching (In the Northern Hemisphere), the Winter Solstice occurs on December 22, 2007 at 1:08 AM EST hear on the eastcoast of the USA, that point when the longest night turns and beging to becomes the returning of the light. The deepest Yin tansforms and begins the process towards the broadest Yang.
May the light of hope shine on each of us, knowing that this website and community, with such freely given information for The support of healing, given freely, without the element of need to recieve material gain, inspire us all in our times of discouragement and difficulty to keep our eyes on the prize (I know I should be quoting someone here), be it cessation of decline (a huge wonder in itself) and/or full return to completely normal functioning, The Stratton/Wheldon CAP is truely a strong ray of hope and hope is the turning point towards personal healing.
To close this post I'll add that famous quote from Charles Dickens in his book A Christmas Carol, by Tiny Tim, "God Bless us, everyone".
Louise
CFS/ME. CPn posititve, Bb positive. Started CAP 6/24/07 Doxy & NACi 11/3/07 Macrolide 150mgBID added to Doxy100mgBID,NAC600mgBID 11/22/07 #1 Tini Full pulse 500mg BID 11/26/07Cholestyramine HS for porphoria/Lipo Endotoxini sxs x 1 week after pulses.
Hi,
Thank you everyone for all your kind words.
Mark
UK Carer of bedridden Severe ME/CFS Feb06. CPNi dxi. Apr07. Samento 15 drops per day July07. 1500mg NACi per day Dec07. Building up on supp. before CAPi.
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.