Need a Word of Encouragement

A word of encouragement?? I haven't checked in for quite a while. Been doing ok, but have been undergoing Vitamin C IV treatments for 4 weeks followed by Rifampin 150mg twice a day for 4 days.  My energy is zapped and the Rifampin feels like poision to my body.

I chose to do the IV treatments to try and "speed up" the healing process. I have to take the Rifampin along with the treatments and it's kicking my butt. I call it my poision. I'm doing this to try to purge some of the brain fog, so hopefully in the long run and with the delayed gratification process, I will see a change and feel better. But right now I'm hurting all over, can't sleep (obviously it's almost 4 a.m. my time), I'm depressed and can't seem to pull out of my hole. I've been house- bound for 4 days now, but too tired and weak to get up and get out.

I'm taking most of the recommended supplementsi and vitaminsi and chlorella. Anything else I need to do or know about the Rifampin that might help? Guess I just need to hear from some of you who've been knocked down like this and saw light at the end of the tunnel! Thanks for listening.

Lynn

 

Comments

I think the bottom line

I think the bottom line here, is that you cannot speed through killing Cpni.   Only go as fast as your body can tolerate.   Dying Cpn is toxic to the body, more toxic than the medication itself.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Lynn, I hope you are doing

Lynn, I hope you are doing well,

that was a scare!

Please take this treatment seriously & respect the damage that the CPni can do & has done to your body.  You could have died!  Check the moppers list & increase all you are doing, you have to get rid of these toxins from your body pronto!

this is a marathon, not a race, please don't make any rash decisions in the state of cog fog. 

peace

r

 

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<

Lynn, are you the Lynn that

Lynn, are you the Lynn that asked if anyone else is going to Dr. M?  When I first joined this formum I sent you a message but you haven't been on for a while.  I took 4 IV vita c treatments which may have helped some but can't afford anymore.  Can't afford to go to the doc until my insurance pays some since I have to pay up front.  Write me back!

FMSi/CFS 1995. tinnitus">i, ibsi, sinusitis, EBVi, NACi 2400mg, valtrex, cortef, armour, doxy, biaxin, tinii, vita c 5 - 10,000 daily 

Update on my day! Thank you

Update on my day! Thank you all for your comments...As the day progressed my blood pressure continued to soar, along with vomiting and nausea and EXTREME headache. I had been on phone with doc's office all day trying to figure what to do. I took high dose of Lortab, compazine and phenergan. He called me in some cholestyramine which I took, about 2 hours after taking some charcoal. But still no relief!!

When BP hit 160 / 102 I decided to go to ER, but before I knew it, it was too late and I had to call an ambulance. I hated that!! But, by the time medics arrive my BP was 216/114 and I was having a seizure, so I knew I had done the right thing.

Bottom line, after CT scan of my head, blood work, 2 shots of dilaudid and zofran, still barely any relief. Respirations were crazy, sinus rythms (heart) on EKG off beat. I just got home after leaving my house around 4:00pm this afternoon. ER dr referred me back to my GP tomorrow for follow up. When i left the ER my BP was still 150/97. So here I am, I'm alive for which I'm grateful, but still don't know what's going on.

I'll check in tomorrow after my dr visit. Jim, I had my protocol listed before, don't know what happened to it. I am still taking Doxyand NAC daily and Azith MWF. Thanks for the info on Rifampin. Won't take any more for now! Lynn, yes it's me! Sorry I didn't get your message before but will write you.

Thank you all again for your words of encouragement and information. Thanks for being there for me when i needed it!

Lynn

doxy 250 2 x day; azith MWF; NAC 600mg daily; Mpn, Cpni, CFSi, Fibro, Partial Temporal Lobe Seizures, IBD, Hypothyroidism 

 

 

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Brain fog! Didn't mean to

Brain fog! Didn't mean to offend anyone! When I re-read my post I realized i said "still don't know what's going on." Ok, I DO know what's going on, I didn't mean to insult anyone, I have not taken your information lightly. I realize it's my Cpni and/or treatment that's causing this BP and pulse problem.. I do really appreciate your input and just wanted to clarify...

Lynn

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Lynn, we are delighted to

Lynn, we are delighted to hear from you, and send our love and encouragement. Rifampim plus IV treatments! what a warrior you are against the cpni. I haven't even started rifampin yet, and I am over two years into treatment. My third practitioner fired me as a patient when I brought up rifampin. Your diagnosis is like mine. The first months on metronidazolei I was in pain and could go a whole night without sleeping. I was more depressed than before, but I told myself it wasn't me, it was the chemicals from dying cpn. People without cpn or other such infectionsi can take these antibioticsi without getting sick from them. Rifampin and metronidazole poison Cpn. The cpn and dying zombie cells release toxins that are indeed poisons. No wonder we feel bad.

minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)

Lynn- You need to put your

Lynn- You need to put your protoco in your signature page. Listen to Sarah... you should not use Rifampin in sporadic dosing as you are doing, especially without a constant base of proper dose alternate antibiotic such as doxyi or zithi. This encourages forming rapid resistance to Rifampin not just from Cpni but from other slower growing bacteria such as the TB bacillus. Great spirits should not have mediocre treatment!

Cesare- you don't have to stick with it for the remainder of treatment, but 4-6 months of full dosing along with another antibiotic and the flagyli pulses is reasonable. This is why rifampin is not used for a week to ten days as other antibioticsi are often used for treating run-of-the-mill infectionsi.

 

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

To any of you about to

To any of you about to start rifampicin or thinking of doing so, you must take it with another bacteristatic and you can't stop and start it at will.  Resistance builds very readily if you do.  I took it for six months before moving to intermittent protocol, when I just swapped back to doxycycline and roxithromycin.  Simple. 

Once you stop taking it you must leave at least six months before taking it again..............Sarah 

An Itinerary in Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Ahhh, Lynn, shortness of

Ahhh, Lynn, shortness of breath was my middle name. I have always been fairly sportive and never had a problem walking uphill or do some slow jogging. Starting last year december I felt my condition deteriorating. In Feb is was so bad, that I couldn't even mount a few steps or move quickly from one room to another. I even stopped smoking after 40 years.... (and miss it)  Chest x-rays (2 of them) and a CT scan revealed nothing. I improved with taking Erythromycin as monotherapy as I had only been dxd in April with CPni.

 Daniela

 CPn diagnosed, on full Wheldon protocol since April 08. Only the most necessary supplementsi.

Cpni diagnosed. Monotherapy Feb08 - April 08. Then full Wheldon protocol. Feb.09 first steps toward intermittent. NACi, Vit D 2000IU, B complex

Lynn- All I can tell you is

Lynn- All I can tell you is I still haven't gotten to Rifampin, but it's looming as the next step for me. Every time I've tried it I got too slammed to keep working and such. So my hat's off you for doing it, and I think you'll get the benefit of it in the long run as Dr. Stratton considers it one of the weapons of choice against Cpni. If you are not doing the "moppers" religiously (charcoal or cholestyramine) then get them going. I have not found chlorella to be adequate for serious secondary porphyriai, and Rifampin can really produce that in spades.

 

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

Jim, does it appear that

Jim, does it appear that the way I'm taking Rif is a problem? Straying too far from Stratton protocol? I've only taken it in 6 doeses, beginning 1st dose the day of the 3-hour Vit C IV, then 2 + 2 + 1 dose on Monday. Then i don't take it again until friday when I get the IV again, and take the 6 doses again.

Lynn

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

I believe Rifampin is the

I believe Rifampin is the poison of choice to kill Cpni, but it is hard to tolerate and some people cannot get on with it at all.   Another problem with Rif is that you cannot stop and start it, especially if you are not taking other antibioticsi at the same time to stop any adaptation that may be taking place.  

So the only thing to do is to stick with it.   The doses are small compared to what you could be taking, so you cannot reduce it.

I'm not familiar with you protocol, so that is the best I can say.

Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.

Hi Michele! You wrote that

Hi Michele! You wrote that you cannot stop Rif and start it again. That was also my question in this thread:

 http://www.cpnhelp.org/rifampicin_schedule_quest<

So If I start with Rifampicin I have to stick with it for the rest of the capi?

Male 38 years (Germany),CFIDSi, IBSi, Enterovirus, Cpni and Bartonella, Dientamoeba fragilis positive. Started Capi on 02/19/08, Currently taking Bactrim, Flagyli, soon adding Malarone and Clindamycin for suspected protozooa. 

Thank you all. Michele, I'm

Thank you all. Michele, I'm still on Doxyi, NAC and Azith daily, never took Flagyli or Tinii. Jim, I will try the charcoal and cholestramine (sp?). Did any of you have shortness of breath in general with the Cpni or Mpn? I've brought my numbers down from 1:1024 to 1:512 on the Cpn and from 2.85 to 1.94 on the Mpn.

Lynn

Lynn

"Great spirits have always found violent opposition from mediocre minds."

Cpni, Mpn, CFS, Hypothyroidism, Fibromyalgiai, Myofascial Syndrome, IBD, Tinnitus">i, Hx Partial Temporal Lobe Seizures

Lynn, as one who began with

Lynn, as one who began with Rif (hurrying here), I can tell you, IT IS DOING ITS WORK!! While you are housebound, read my story with renewed understanding. I now, in retrospect, believe even more strongly, that your body is exhausted because there is a war going on - in a very true sense. What is happening to you may have bearing on your quality of life from now on - my feeling: let it happen. I am back on Rifampin after three years, and it has hit me much harder than I thought it would - I just finished my 53rd pulse, this one again with Rif, and was reeling from it. This morning, no more flagyli! Hooray!

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.&am