Help me please! RX'd SMZ/TMP DS

Submitted by Miying Meng on Tue, 2008-08-26 21:43

My urine culture came back showing S. saprophyticus which will not be stopped with the Cephalixin I was taking. The nurse called to say I need a sulfa med. The doctor RX'd me SMZ/TMP DS 800-160. I had no clue what it was so did a little search and found that it is double strength Bactrim. I read here that it kills Cpn. I am thinking ... UH OH. Is this something I should do? I am suppose to take one PM and one AM until gone for 7 days.

I have never taken this stuff ever in my life so it is a BIG unknown anyway. But add to it I know it kills Cpn. Which I am seemingly infected with via the NAC test, etc. I am very scared to swallow one of these big ole tablets. Any tips, suggestions, advice? I know that you aren't doctors but you know more about Cpn than any of my doctors. So I just want your unbiased opinion. I definitely will make up my own mind. Thanks for anyone that is brave enough to share with me what they think about this. I would be geniunely grateful for any help. Frown yikes.... this is a test I wasn't ready for yet.  MM

MM - I think this is the universe' sly way of pushing you into the abx treatment. Consider, if you didn't know about cpn, you'd be taking this medicine because your doctor said to. You still need to be cured of the s.sapro, so you might as well swallow your medicine like a dutiful patient. Image removed.

 You're as well-prepared as you could be, what with the NAC and supplements, so my vote is to go for it.

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

LOL .... You made me have a big ole belly laugh. Image removed. Good medicine! Thx Mac!

So I take it the key to success with this treatment will be diligence with the moppers as the die off occurs. Shall be a very interesting experience.

By the way Mac ... I ordered mino, zith & tini yesterday to start my treatment. This is forcing me to start sooner and a bit backwards. But I guess that will be ok. I hope.  Image removed. MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM - You likely have a surpressed immune system and also now have a bladder infection that needs treatment. 

Yes Bactrim DS is active against CPN and numerous other bacteria but on the other hand bladder infections run amok can spread to your kidneys and ultimately even become systemic - this to me means you need to consider following your doctors advice and taking the correct antibiotic for your infection.

In your situation and with your many issues, I know you are very reactive to many things but I can't help thinking that a bladder infection incorrectly treated could lead you down an even more difficult path.

If it's any help - my husband has been on Bactrim DS twice a day since November last year with good success.

 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

I agree Daisy that my immune system is suppressed. I have been 25D deficient for many years now. Even before I started the MP in 2004 I had a test result of 24. After two weeks of 6000 IU twice a day of vitamin D3 my symptoms flared up so bad I quit taking it thinking it was like poison for me. A couple months later with that false idea I started the MP. 25D tested at 27 then.

It does give me some confidence reading your comments Daisy. I really appreciate you taking time to share them with me. I will just remember in the bigger scheme of things it will do me good to take it. But I am still nervous about it. I will face my fear though. I may be a afraid but I hope not a coward. Image removed.

I am so glad you, Mac and others are here. I think I would be a coward without your pep talks.  Thank you very very much ....  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hey Reenie! Good thoughts. You know after doing the tiny doses and having horrible time with my liver/gallbladder I am very gun shy so to speak. I am thankful you understand my fear. It helps to know the Z did not wipe you out. I need to take it in about 30 min. and the thought gives me the creeps. LOL

I like the idea of it making me feel better than ever. Maybe I will just hang on to that when I swallow it. Image removed.  I know I have been fighting something since the beginning of the year. It has been building month by month. The last time I took antibiotic until UTI was the 25 mg. mino was in mid Nov. 07. So guess it is about time. Sure do thank you for all the times you have given me helpful suggestions to get to this place.

Well, I hope the big V does good things for you Reenie. It would be so awesome to be free to ride your Harley again. I was so happy for you before you relapsed. We can do it again .... but only this time the right way!  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hey MM,

Are you saying you're also starting Zith along with the Bactrim??? Or was that a typo, I HOPE, I HOPE!!! I wouldn't start your CAP until after you treat your UTI with the Bactrim.

Patience and one thing at a time would be my suggestion. Image removed.

PS I'm feeling rather horrid lately (2nd and final day of tini pulse) and can't even imagine RIDING anything at the moment. Bed hugging has become more of my favorite hobby these days. Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

OH NO! Image removed. I just didn't word that right. So sorry. Did not mean to alarm you. My head is a bit foggy so it is hard to think to write. Only will be on the Bactrim DS this week (7 days). My antibiotics won't get here for a month. Took me five hours and eight phone calls to get my order processed yesterday. Wacky system. But I stuck with it until I did it. So they gave me free priority shipping for my trouble.

Well, I got a date with a big white tablet. Might as well get it done. The Cephalexin gave me quite a ride. I wonder what this one will be like. The Ceph. did make me feel better ... my head isn't so full of pressure. Except now DH says I snore. So I am wearing those breath right strips so he can sleep. Image removed.  I put my man through the paces I tell you. He doesn't complain thankfully. Too bad he worries though. He feels better now after I read all your posts to him. Thank you very very much again everybody!  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Hi MM,

Bactrim DS was one of the meds I used several times on the MP. I don't think you'll get quite the same effect as you would on a combo of abx or if you take the dose your Dr is rx'ing you. It seems there's been much discussion of the tiny doses causing more issues and sxs than the normal rx'd doses.

I was scared to take a full Z tab when I came here. I never had done that before but I was FINE. Now I'm scared to take the Valcyte because of reading so many folks worrying about toxicity and on top of that I don't want to stop the CAP, which I'm not planning to do at the moment.

So, to surmise, my vote/guess would be for you to take the Bactrim and get rid of the UTI. It sounds like you have an infection from your weakened state of immune function and you might even have had a low grade infection for some time now. Treating it might actually make you feel better than ever! Image removed.

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!  

MM- I go with Mac- you are as prepared as you can be. I took Bactrim before I knew I had Cpn, and somehow never ended up getting whacked by it. So may it be gentle upon your system and hell on the bacteria!

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

That is good to know JimK. Thanks so much for the good thoughts.

OK ... I took it! Done deal. Image removed.

Now I will sit back and see what happens. Well, actually I was requested to make popcorn. DH & the dogs are waiting for their nightly treat.

I'll let you know how it goes ... thanks so much for helping me do this. MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

Just a little blog update ... (1 hour into it ... so far so good. Burning stomach so drinking lots of water. Forehead went numbish first, then nose, then lips & gums ... so my nickname tonight is "numbskull".  If I stay numbish and brain fogged for the next 7 days it would be better than pain. But I know this is the first wave ... MM

 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

What I recommend you to do is:  relax!  the more fear the worse it might be.  May God be with you and thank God you are having a treatment to heal; that is all you need to think now:  healing, getting better!!!!

I agree that questioning and thinking about the treatment was the correct way to go, congrats!  That's what this blog is about, a blessing for everyone!!!!

Go, get better, no numbnesses nor anything; you'll have to get better - bye infections!

Keep us posted please!

Maria P. 

God bless you all.

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

Thyroiditis, sinus infection, heart, muscles and joints. 

I should know this, but what life stage of CPN does Bactrim affect?  If I were to use it as part of the CAP, what ABX would it replace? 
NAC 2400mg, Doxy 200mg, Roxi 600 mg, Metro 1200 mg, Rifampin 300 mg, Self medicating since April 2008, previously was on long-term Biaxim (not CAP), hard time finding doc who will help with CAP.  Try to tak

Bactrim DS was shown in vitro to be effective against the RB stage of CPN. 

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him.

Daisy on her own CAP 11/2012. 

Thank you all for contributing to my success! Totally you folks are the best and most helpful support group imaginable. I am very grateful to you.

MariaP ... Well, it is easy to be relaxed now that I am past my second dose. The 'unknown factor' for me was huge. Image removed.  But so far it hasn't been any worse than anything else I have been through the past 7 years. Actually much better than some stages/events. Unlike the Cephalexin effects now I can feel where my bladder lies. Ouch. But it feels good to know something is happening in there to help me get well.

It is very interesting for me to contemplate the idea that Bactrim kills the RB stage of Cpn.

Thought I'd give you an update on my progress: I have a lot of nerve and vessel symptoms along with some muscles and joints. Scalp sores are healing from using tea tree oil for a week and perhaps the Cephalexin. But now they are itching again. The following does not have anything to do with Bactrim but I noticed a strange rough dry patch on my right ring finger above the knuckle last night. I don't know what my scalp sores are but it is cyclic. I can't see them as they are at back of head toward top in a half circle. Wondering if the one on my finger matches them? Brain fog has increased so I don't plan on driving this week unless it clears. Woke up every couple hours last night with bearable pain in multiple familiar spots over my entire body. This morning I felt sore in most of these areas ... you know that beat up feeling we often get with FM. I did have mild chills a couple times during the night. After breakfast I started to get heart pressure and skipping beats so I am drinking Emergen-C which seems to be helping a bit. If not effective I will take a glucose tablet and/or drink a 16 oz Gleukos. In the meanwhile I will be sucking on Smarties.

Question? In your opinion should I do my FIR sauna as usual today or skip it? I am thinking with all the die off it may help eliminate some of the toxins. But with cardiac symptoms in the shadows I am not sure. Thinking maybe I could do it and if I have trouble just stop it. Yesterday for the first time I actually did have a bit more sweating than just under my breast. Not much but it is a start. Image removed.  Kind of thought maybe the Cephalexin made some difference but I dunno. Just a guess.

I hope I am not being a pest asking questions again. I haven't had a chance to read all the information given to me about FIR. I don't have a full understanding if it yet....  will "just detox" or "cause more die off" or both.

Slainte!  MM

 

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

I think you'll get conflicting responses this time. I wouldn't do the sauna, personally. Push too hard and you might get slammed. I don't think the benefit of the sauna outweighs the possible negatives right now.

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

Thanks for sharing your opinion with me MacK. Sounds right to me.

I didn't do the FIR sauna today. I was concerned by my instability. As the tissues become saturated with the bactrim I am not real sure what each moment will bring. Feeling a lot going on inside other than bladder related. Plus each dose brings on numbish sensations in my face & scalp then brain fog increases. (So hard to stay focus at times. Yikes ... like now .... where have I been .... the clock can't be right!)

Nevertheless, I am so happy it is better than I expected thus far. Now am feeling a bit like a silly woman for being so fearful. oh well. I have more confidence now to take the minocin when it comes. So I believe it is a profitable lesson for me going through this experience. It was meant to be. Again thanks to everyone for your support. Slainte!  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

I agree with MacKintosh. Be gentle with your body -- it has plenty of work to do right now with the help of the bactrim and healing from the UTI.  Give it a week and see how you feel.

 

Corinna | GFA. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Blog entry (8/29) Yesterday I had the best day in a long while. Great energy, very little pain and feeling motivated. So I tackled & completed all the neglected house and office chores that were my priorities to do on my "next well day".

Then last night the burning red eyes flared up. I should have known things were shifting then. I woke up (after uncommonly sleeping in very late today) with a familiar but unpleasant stitch in my right side. For me this means that my gallbladder has inflammation causing restriction of flow out the bile duct. You can hear it gurgle when it releases which when it occurs gives me relief from pain. I have only taken 6 of my 14 tablets of SMZ/TMP DS. I need to keep things under control so I can finish off the next 8. I do take 5 - 100 mg. tumeric caps every evening. But evidently it is not enough. I am adding Natural Factors Liv-Gall Cleanse to help out. In the past drinking lemon juice with water helped me out quite a bit too. So I am being diligent about using every measure I know to keep out of trouble hopefully. Smarties, Gleucos drink and Emergen-C too. Plus back to a low fat diet not that I eat that much fat anyway.

Last week when taking the Cephlaxin I began to become constipated. I didn't feel like eating much as I had a queasy tummy. I have been taking my favorite remedy  800 mg. magnesium oxide. Harmless and effective. So I had thought it was just the bladder infection. But perhaps even then my liver was beginning to struggle with the Cephlaxin die off, etc.

I am wondering if I really am going to be able to do the CAP. My liver/gallbladder seem to be very touchy after a 9 month break from antibiotics. I had hoped the 4 months of 'supplements only' had changed my situation since all the symptoms went away using them solely.

I am guessing this makes it fairly evident that my liver/gallbladder may be infected with Cpn. I will need to go very slow or risk losing my gallbladder I am guessing. If anyone has any suggestions I would love to hear them. I do recall someone suggesting in an earlier conversation that I may need to use a liver med. I will look that up on my older blogs.

Slainte!  MM

2002:CFS. (2008-09:CPN - CAP/5 pulses)  3/2010: Restart CAP: 200Doxy/250Zith-MWF/Tini pulses. 6/2010: HighBP/Benicar, 7/2010: EBV, HHV6. 2012: 6,000 IU daily vit. D., Citioline CDP choline = sleep improvement dramatic. 

MM- Besides milk thistle, Dr. Powell has used a prescription med called Urso Forte for liver support. As I had a lot of liver involvement of Cpn, symptomatically at least, I found it helpful for the early part of the treatment until the CAP eventually cleared more of the infection in that organ. Urso seemed more supportive and helpful than milk thistle and other liver supplements.

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

MM, its a good thing that you are treating the bladder infection before you start the CAP.   Bactrim is effective against the RB stage of the Cpn and as its main action would be to stop it replicating it is probable that you won't get too bad a reaction to it.   You being so sensitive means that you may well feel the effect but not to the extent that you would if it were addressing the cryptic stage like Flagyl or Tinidazole.

When you are ready to start the CAP after you have finished your course of Bactrim, I suggest to start it slowly, one drug at a time, even half doses to start with if necessary.   Once you tolerate the two bacterostatics fairly well then it might be ok to start a small pulse.   But this may take 6 months before you feel comfortable enough to do that.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Needadoc,

I'm not a doctor but I would suggest replacing doxycycline with Bactrim.

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

FWIW,

When I was on the other site, we used Bactrim along with mino or as a 3rd abx (no bactricidals done there) along with mino and Zith.  Bactrim uses that P450 pathway for clearance and so I had to stop taking Quercetin while on it.  (I wish I understood biochemistry more) 

NAC 2.4g, Zith 250mg/MWF, mino 200mg, Tini 5day/1g/5 pulses, Valcyte
Supplements, CFIDS/FMS, Hashimoto's, Psoriasis, PA, IBS, Sec Addisons

Don't believe everything you think!