trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
hello again helpful people!
I have been on 3 doses of CSM for about 5 weeks. I tolerated it fine until surgery 2 weeks ago. I stopped the CSM for 2 days, and then ramped back up pretty quickly. I do not know if the surgery has anything to do with it. I stopped all pain meds 2 days after surgery, that was 2 weeks ago.
It feels like my gut is being SCOURED clean---it HURTS!!!!!! It hurts all the time. And if I eat it hurts even worse. I also get bloated and gassy now no matter what I eat.
I did some diflucan and pushed the theralac and yogurt but that hasnt helped. I did L-glutamine and that seemed to help a TINY bit.
I am pooping 2-3 times a day. Not diahreah. But if I dont poop right after I eat I get all boated and in so much pain it is hard to do anything.
Is this typical with CSM?
wise input please! Trails
[ 22. June 2006, 11:38 PM: Message edited by: trails ]
Posts: 1950 | From New Mexico | Registered: Sep 2001
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riversinger
Frequent Contributor (1K+ posts)
Member # 4851
posted
I've never had this with CSM. What other meds or drugs are you taking? I know you were on things for Babesia, and most of those are rough on the gut.
It is possible the CSM could cause trouble, I think gut issues are one of the side effects. You could try stopping for a few days, to see if things improve.
It's hard to pinpoint, however, when you are taking a lot of stuff. Zithromax has always been hard on my gut, and so is artemesinin.
posted
I had the same problem. I wondered if the gall bladder doesn't like the CSM? That may have been my problem.
Do you still have your GB?
I did stop taking it because of bloating and pain.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Carol B
Unregistered
posted
Okay- I haven't a clue what CSM is. Is there a reference chart I can print out so when people use initials I can use it to decipher what people are talking about.
Remember- I didnt even know what the "L" word was that someone referred to in a post.
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hey there Trails..Sorry about the tummy..And yes it could be CSM, cholestyramine(a cholosterol med for Carol from Balto.)
Our current llmd ordered them for us from a compounding pharmacy and then I asked what was involved in the process..
THe pharmacist admitted he just put the powder into gel caps..So lmt went into production with what I needed to do it myself..So for less than $30..Had the stand and empty caps and it was doable..
If you want more details, let me know..But also tell your doc incase it is something else..
Posts: 2360 | From SE PA | Registered: Mar 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Thaks everyone!
Riversinger-- I first suspected the art, but now I don't think it is that. Hard to explain why....just a "gut" feeling, ya know? I could very well be wrong though.
Lymetoo-- I still have my GB and it has some small stones which I am trying to disolve with actigall. I have alot of pain in my URQ on a regular basis, but I havent had this tummy thing before. I was worried about the GB and asked the LLMD before starting it, but he said, no--it should not be a problem, the CSM doesnt really affect it.
lymemomtoo--- does capsulating it help? I mean are there less tummy side effects this way? I could do this pretty simply---I already capsulate my psyllium doses. Tell me more.
Everyone-- I am going to stop taking the CSM for a few days and see. I cant stand the pain. If it gets better then it was either the CSM or yeast---coz I am still pushing antiyeast stuff and diflucan and probiotics. If it doesnt then it is the zith or art.
BUT if it is the CSM upsetting my tummy---WHY does it do this and how can I get around it coz I was so hopeful that this treatment might help me!!! I was tolerating it fine at full does for almost 4 weeks.
Thanks again for your wisedom! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
I don't know WHY it does that, but I would definitely think it has something to do with the GB or liver. Doesn't it remove toxins, etc from the liver?
I was also able to take it for several months....maybe 2...then I crashed. I bloated bigtime and was quite miserable.
ARe you taking something to keep from getting constipated on it?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
You're lucky, CSM corks me up like a pile-driver. Posts: 2451 | From Lyme Central | Registered: Aug 2001
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Trails, my daughter was able to tolerate it in gel caps.. But then she stopped wanting to take any meds..She hates all Drs and all meds..
Posts: 2360 | From SE PA | Registered: Mar 2004
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Update: 24 hours off of CSM and I am just barely beginning to see the POSSIBILITY of maybe some relief. The edge of the burning pain is down by a fraction of a percent.
I took my moring zith, plaquenil and artemisinin but I didnt take my evening pills and I wont take anything until I communicate with the LLMD.
So ---I am OFF all MEDS!
I did take another diflucan and am eating tons of yogurt and probiotics. I already did no sugar, and low carbs and basically healthy organic diet.
I havent been able to tolerate ANY raw veggies. IT was a big old salad that did me in.
Will keep you updated.
I had forgotten how STomach aches are similar to back pain and headaches---they affect ALL of you. ug.
quote:Originally posted by lymemomtooo: [....And yes it could be CSM, cholestyramine (a cholesterol med ..[/QB]
It's a prescription.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
CSM is Rx and it is typically used for cholestorol management, but in Lyme patients it is used to bind neurotoxins so they can be eliminated more easily. It is SORT OF like charcoal tabs but MUCH MUCH more intense.
It is very gritty going in AND coming out. I have had terrible problems with fissures ever since I started it. It is like pooping out sand paper 3 times a day! OUCH!
I talk about my poo a lot huh?
at least I am not talking about peeing in the bath.
Dana how long on the mepron,zith and art till you felt better?
Posts: 1950 | From New Mexico | Registered: Sep 2001
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Trails~ Your posts are often good for a chuckle. Thanks, I needed one this morning.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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5dana8
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Member # 7935
posted
Trail
A good 3 months in treatment. Which I know isn't as long as some people but I would have gone longer if my tummie held out. Luckily that all my body needed.
And then a good 2 months to clear the herx. I haven't been on anything for 3 &1/2 months because of stomach issues. Except for energy problems things have been holding so far. Knock on wood.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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riversinger
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Member # 4851
posted
trails, if it is like pooping out sandpaper, I wonder if it is the type of CSM you are taking. Mine, which is compounded, is pretty fine, and doesn't have any sandpaper problems.
Have you ever tried psyllium seed? It is good for sliming up the poop, making things slide through much more easily.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Now here's a great dinner conversation, eh?
I have been taking psyllium (husks, not seeds) for 4 years now. I found it to be so so so helpful when I suffered awful constipation due to adhesions (from endo) strangulating my colon.
I continued to take the psyllium while taking the CSM. I dont take much right now, but my poops were already SO SO SO bulky---that was the other thing---I mean these poops were not average size poops, people.
They were very big in circumpherence. That combined with the grit is what caused the fissures. They were soft and all, but I couldnt get them to come out skinny.
They have made me skinny though---I have now lost 10 pounds in 5ish weeks. my pants are starting to fall off me now!
Riversinger---I noticed a big difference when my mail in pharmacy sent me packets instead of the bulk can with the scooper. The taste was sweeter and the grittiness was less. Strange huh? But I was on the packets for almost 3 weeks before I had this tummy thing.
I might want to do the compounding thing next round. Will email you about it, kay?
Today has been ever so slightly better. Baby steps people. Baby steps. Posts: 1950 | From New Mexico | Registered: Sep 2001
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5dana8
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posted
trails glad you are feeling a whee bit better.
I don't think you described your poops in enough detail. Photo's would help.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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lymemomtooo
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Member # 5396
posted
Since it is removing cholesterol with the toxins and you are loosing too much weight, maybe you need to eat some junky stuff to help with this..
And photos are not needed for me..I believe you gal..
Posts: 2360 | From SE PA | Registered: Mar 2004
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timaca
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posted
I dunno...the photo idea gave me a huge laugh, so I appreciate the thought for that reason alone.
Timaca
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
I don't think you described your poops in enough detail. Photo's would help. [/QB]
OK, gang....If trails gets to post her poop shots, then I'm posting MINE!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Trails, I am not a candidate for taking CSM (I alreadh have chronic constipation), but when I looked into it, I found that the commercial preps of CSM were either prepared with sugar OR with some artificial sweetener - I think aspartame, but not sure.
Docs should ask you which you prefer before they write out an Rx, but they often don't.
I was just wondering which you are taking, and if it might help to switch to the other formulation? We all react so differently to stuff.....
Tracy
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Truth---I was taking the regular CSM--with sucrose. I was NOT happy about that, but I didnt feel like I had a choice, coz I was unable to pay for the compounding pharmacy that would do it without any sugar.
I wont take asmpartamine coz I dont know how that would affect my tummy.
I am looking into doing the compounding thing for the next round.
today is again a tiny bit better.
But my lyme symptoms are MUCH worse!!!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Trails....I think it can actually make you herx. Don't ask me how!
So, you're not going to post your poop pics?? Darn!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I got my PERIOD!
One full week early and only 3 weeks post-op (removal of right ovary and tube).
It is hurting like the dickens.
My lyme symptoms are flaring like no tomorrow. It is INSANE!
But at least I know now that this is very much related to hormones.
The tummy thing---I dont know---it is much better now. THANK GAWD!!!! I think it was the combo thing of the CSM and the abx combined with the surgery and some of those meds and then puking from the anasthesia and just not finding my balance as I can do under NOT surgery circumtances.
I think I will resume treatment soon with CSM and ABX and balance.
phew.
thanks for the ears and shoulders, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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