Topic: So sorry to post about this...again. But need some new ideas on 'Restroom Issues'
Melanie Reber
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posted
Good morning all,
I can't believe that I find myself trying to deal with this problem again. This has always been a severe re-occurring issue with my treatment. So, I am really trying to find other solutions besides just discontinuing my current meds once more.
I NEED to be on Penicillin right now as it has proven to be the one class of drugs that can halt ACA in its tracks.
However, every time I try to add it in, within hours of the initial dose, I am completely stuck at home... unable to do much else besides trying to find a way to stop this. I try the BRAT diet, minus the applesauce (not to my liking), I try taking Pepto, I try adding psyllium fiber, and in the past have had to use Questran or CSM.
I know that if I call the doc, I will be told once again to stop... as oral 'cillins' just don't seem to agree with me any longer.
The optimal choice would be to bite the bullet and go back on IM Bicillin, which was the first choice all around, but I am having a difficult time acquiring this financially and logistically.
Anyway, I am really hoping that your combined wisdom can come up with a few new suggestions here.
And am wondering if any others have had this same issue with any one class of ABX that you simply can not tolerate any longer? And if you found a way around that problem? Hopefully?
I truly despise posting about this, but am at the end of my rope with ideas.
Thank you so much in advance for any suggestions and please accept my apologies in advance for the topic nature.
Melanie
Posts: 7052 | From Colorado | Registered: Mar 2003
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Dekrator48
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Hi Melanie,
I don't really know what you have tried in the past, so forgive me if my suggestions seems trivial.
I would suggest increasing the dose of your probiotics significantly.
It would seem that the Penicillin has absolutely wiped out all of the good bacteria in your intestinal tract.
When I started antibiotics, I was only taking one capsule daily of Ultimate Flora (50 billion cultures).
I soon found that I needed to increase the dose to 4 capsules daily.
I know they are a big expense, but my LLMD said I can take as many probiotics as necessary.
If you have not tried it, I would also suggest going gluten free.
I know that gluten intolerance isn't caused by penicillin, but it really helps with stomach issues...so it couldn't hurt to try it.
I hope you find relief so you can continue your treatment.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Do you have any stomach cramps or pain which could indicate gastritis?
I am assuming you take both acidophilus and s.boularrdi?
1st suggestion -- you could try olive leaf extract to kill off any candida or other bad G.I. bacteria -- this worked for hubby years ago when he had bad diarrhea from Clindamycin and Quinine -- but he did stop the meds temporarily.
2nd idea -- try Xifaxan -- read about this prescription med in the "Bell's Palsy of the Gut" article -- this helped when hubby had the paralyzed ileus.
I would give you my slime tea recipe but that is primarily for healing gastritis.
You most likely have an imbalance of G.I. bacteria -- there are other things besides candida or clostridia to worry about -- could be klebsiella or ??? (can't remember the other 2 or 3 that hubby had out of balance when tested in the past).
This is not medical advice, just my opinion based on hubby's experiences.
Also, the toast could be a problem if you have a gluten intolerance. Would try a gluten free and dairy free diet.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I had to take VSL#3 with most abx or I had that problem. As long as I took VSL#3 I was fine. Theralac and Ultra Flora together didn't have the same results as the VSL#3. Unfortunately, it's expensive.
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Melanie Reber
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posted
Thank you each SO much. Your ideas are most welcome.
Yes, upping pro-biotics was the main suggestion from the doc last time this happened with Amoxy. I was to stop all meds and take them every 2 hours.
That stint lasted 11 days, but eventually stopped with those changes. I was not a happy camper and the doc, of course, was not too thrilled that I let it go on for that long.
And yes... the expense of really good ones has kept me with market variety brands recently. I KNOW it is imperative to spend the money on this... but, ya know... the reality is, there is only so much money to spend.
Dekrator, I have never tried going gluten free... just the idea seems a bit daunting to me. However, I may need to adjust my diet at this point in the game. Thank you!
Bea, What you have been through with Hubby... well, eventually you may want to write a book on it. No, there is not any added pain or cramping with this problem for me... not this time anyway. My tum does put out quite the sound effects though... rumbling and grumbling. And of course, I feel that too.
I'm currently on a Mepron pulse, so would really like to stay on this if possible with considerations as to what can go with it. I suppose I will have to do some more research... Thanks so much!
Six, I appreciate the brand name suggestion. I'll try to find a source and price I can live with.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Dear Melanie, I have a massive overload of yeast. The last time I took Amoxy and Flagyl, I had the same trouble. It also nauseated me. Being on so many abx for years has likely completely destroyed any good part of the ecosystem I once had. Finding a way to repair the damage is tough.
posted
My grand daughter was having issues with her stomach and they put her on carafate. There is a generic, and it's inexpensive. I've used it before too.
It will really plug you up if you take to much. I take TONS of probiotics and I take Diflucan but I've still have to use Carafate from time to time. It works great for me.
Kathy
-------------------- You never know how strong you are until being strong is the only choice you have. Posts: 807 | From South Dakota | Registered: Jul 2005
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posted
Unless you have a pharmacy that stocks it, the only place I know of to buy it is at vsl3.com ... there are 450 billion organisms in each packet. It is generally used for people with ulcerative colitis.
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Rumigirl
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posted
I think I remember that you don't have insurance, but, if you do, VSL #3 has a prescription strength version (double the potency of non rx) that is supposed to be covered by insurance. It's a little hard to get at a pharmacy, but that would be great!
Otherwise, the regular packets are great! I know, expensive, but it works.
Progurt sounds great, but MUCH more expensive, and probably not worth it while on abx.
Let us know how it works out. Plus, the gluten-free diet isn't as hard as you might think. Just takes some planning. It may or may not help.
Posts: 3771 | From around | Registered: Mar 2008
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posted
Dear Melanie, I can give you a list of readily available foods for gluten-free eating if you like. Just say the word! I need to send it to Lymetoo anyway. Another thing I would like to suggest is getting tested for bacterial dysbiosis, as others mentioned. Being on abx or having surgery puts you at a higher risk for C. Diff.
The most frequent treatment is Flagyl, but sometimes it becomes immune to abx. However, Florastor (Saccharomyces Boulardii Iyo) has been shown to reduce the severity of those symptoms if that is the case. My grandfather has it right now. He just finished doing a course of Cipro after hip surgery. Cipro appears to be bad news for a lot of people according to a recent thread.
posted
I have found out that Magnesium loosens stools, but Calcium plus D has a binding effect. When I remember to take my Calcium I never have problems with loose stools.
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Melanie Reber
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posted
THANK YOU all!
I'm so sorry... I started to reply to this days ago and ran out of steam, but also got side-tracked as I tend to do at times.
I just want you each to know how very appreciated your replies are!
I have a new question though. The issue has continued, and I am now at day 9 with non-stop problems.
Upping the pro-biotics helped for a day or two, although now I am being awoken again. I began taking the new pro-biotics yesterday and things have worsened. Regrettably, I suppose I will have to discontinue meds until I can get back to an acceptable baseline, again.
I was trying to find information on the half-life of oral Penicillin this morning and am not finding anything. So, I am wondering if any of you happen to know how long it takes to make its way completely through our system?
My last med dose was last night, and I have been on these meds for the last 10 days-
500mg Pen BID 1 tsp. Mepron BID 800 Ibuprofen divided into TID 25 Benedryl 15mg Armour Albuterol as needed
Calcium/D L-glutamine
My tum is really throwing a fit... so, I am thinking of just stopping the Pen and Mepron for now and continuing with the pro-biotics.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
I had a gut infection. My LLMD had me take Cipro which helped, but as soon as I stopped it, it came back so he had me take uva ursi, plant tannins, and oregano oil.
Eventually I found that Humaworm worked on the bacterial overgrowth so I used that and also got rid of parasites I didn't kow I had.
After that, the VSL#3 worked well for me.
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Melanie Reber
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Oh Six, thank you so much for your continuous help! I actually do have some Humaworm here somewhere... leftover from my attempt earlier this year that didn't last much longer than a week or so.
I wonder if it can be taken with meds?
Posts: 7052 | From Colorado | Registered: Mar 2003
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TF
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Member # 14183
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Melanie, regarding half-life of oral penicillin, this is what my Mosby's Medical Drug Reference book says:
Also, under "Side Effects," diarrhea is shown as a common side effect. So, that tells me it is common for all kinds of people to have this effect and does not indicate disrupted flora in the intestines if it happens.
Hope this helps!
Posts: 9931 | From Maryland | Registered: Dec 2007
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I took it with meds. It was horrible, made me feel bad. My son is taking it now .... he's adopted, so does not have Lyme, and the parasite die off is making him fatigued ... so I think it's pretty normal for parasite die off to make you feel bad.
I had severe gut issues for over two years .... I know how bad it can be, but you can get better.
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Melanie Reber
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Thank you TF, that was exactly what I was wanting to know. So, with that information, I am thinking this should be over soon! How lovely.
Six, once again, thank you for your encouragement. I will ask the good doc about throwing that in once things calm down a bit.
Posts: 7052 | From Colorado | Registered: Mar 2003
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lpkayak
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are you on nystatin and diflucan?
those and theralac and sbc usually keep me ok
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Melanie Reber
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Good morning LPKayak,
Believe it or not... no, I haven't been on either of those the last 6 months. I'm sure my doc must have recommended many candida control methods, but it has been very difficult for me to add any extra prescriptions or supps this time. I'm uncertain what sbc is, would you mind elaborating?
I'm actually a tad discouraged this morning as things have not improved as of yet... even after stopping the Penicillin on Tuesday and increasing probiotics.
Fortunately, my follow-up apt is tomorrow, so I will be able to ask about a new plan then, as this one isn't quite getting it.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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I just wanted to add... that the need for this whole conversation simply appalls me... as a true 'southern belle' would NEVER even consider discussing such things, especially in such a public setting.
It is just that we put up with so much, and it is very difficult to know at times, what exactly to ignore and what to take action on. Late yesterday, I spoke with one of my best friends who happens to be an RN. Her take on the situation was that what I am experiencing is definitely NOT 'normal' and not something to put up with or to put off remedying any longer.
I mean, 6xs in less than 2 hours already this morning, in her opinion, and she has seen everything, is just NOT normal.
However, most of what we experience is not normal... right?
So, while I hate to be an alarmist, I also don't want to get to a point if no return. And in the back of my mind, there is always the reminder that this is exactly what killed my Grandmother. She ignored the issue until it was too late to do anything for her. And I know that I have inherited many genetic similarities from her, that eventually cascaded to cause her demise.
So, while that all sounds alarmist... and believe me, I fight really hard against that... it is also reality. She died from a mysterious bacterial infection, during a thyroid cascade with uncontrollable diarrhea. She was in her garden that morning...
So, I just want this to stop. Now.
Posts: 7052 | From Colorado | Registered: Mar 2003
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lymeparfait
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posted
Sounds like Candida Overgrowth and possibly parasites.
Many have this problem who treat lyme.
This gets out of balance when we use antibiotics, and the parasites get out of control and live with the candida and heavy metals...
Work on a protocol fot this along with the diet for candida, and you will heal.
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Melanie Reber
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Thanks lymeparfait for your input. I completely agree with your assessment, and I am doing just that. I've been treating with Mepron for 6 months now... this round.
I am also pretty strict with diet. Yes, I falter every now and then, but for the most part... my diet is very healthy. According to my LLMD, I am just not eating enough. So, I have been trying to force that change as well.
Posts: 7052 | From Colorado | Registered: Mar 2003
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TF
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Melanie, I am saying a prayer for you now for this condition.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Melanie Reber
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Oh thank you, TF. Don't you think the Penicillin must be gone by now according to the reference you provided?
Posts: 7052 | From Colorado | Registered: Mar 2003
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Just wanted to send healing thoughts, this sounds horrible what you are going through.
Have they tested for c-diff?
Best wishes.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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TF
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My hubby reacts this way to many meds. It can take 3 to 5 days for him to get back to normal once this starts.
You have had this for a while, so it could take even longer for you to get on an even keel. Hopefully, you should notice improvement one week after you stop the penicillin.
But, if you wanted to make an appt with a gastro now, that might not be a bad idea. By the time of the appt, if you no longer need it, you can cancel it. But, if you are still having the problem, you will be glad you made the appt.
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Melanie Reber
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njlymemom, You are so kind... thank you. No, I haven't been tested for C diff anytime recently. My last stool test was years ago, and even though a few things were off, nothing major was found.
I am SO trying to avoid any more testing, as the money is just not available for it right now. I'm theorizing that this is caused by the 'cillin' class of ABX for me, as this seemed to be the culprit when I tried to add in Amoxy a couple of months ago.
I waited two full months to try again, and was really fine, in this area, until now.
Thanks again, TF, I'm so sorry to know your dear one has this problem as well. I suppose I just need to wait this out and see what the good doc has to add.
Posts: 7052 | From Colorado | Registered: Mar 2003
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sammy
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Hey Melanie, I was looking over your med list and a couple things caught my eye.
First of all the "cillins" are notorious for causing diarrhea even in healthy people on short courses. Which always brings up the C-diff possibility as others have mentioned.
Second the ibuprofen might be irritating your stomach.
Third a rare side effect of L-Glutamine is diarrhea. Interesting because low L-Glutamine can cause diarrhea! You might want to try backing off of it for a while to see what happens.
Fourth possibility is that your Armour dose may be too high. Have you had your thyroid levels tested lately? I know you said that you don't have the money for tests but this is an important one to keep track of. Diarrhea is a common symptom of hyperthyroidism and therefore a side effect of Armour. If you cannot afford to test it maybe you should try backing down for a week or two to see if your gut goes back to normal.
In the end, all of these things could have contributed to some degree to the GI distress you've been experiencing.
What a frustrating problem to have. I hope that you and your doctor can figure out the problem and find a solution soon.
Take care Posts: 5237 | From here | Registered: Nov 2007
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Amanda
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I was going to say what Sammy said. Plus, Mepron, as I know you already know, can cause problems. Maybe you just happen to be taking a combination of things that all have this as a side effect, and combined are contributing the problem?
Also (I hope this isn't to silly), have you tried eating cheese? Cheese with rice in particular can help slow things down, and if you are trying to gain a little weight, it can help that too.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Melanie Reber
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Hi Sammy, Thank you so much for your input! The strange thing about this cillin reaction for me is that when I first began treating 6 years ago, I was on Amoxy... up to 6 grams before I finally decided to bite the bullet and go the IV route.
Now, granted, I did have this issue back then too, but it wasn't constant. So, it just seems odd to me that I'm no longer tolerating them any longer. This was never an issue with IM Bicillin, so I suppose it is only with orals?
The Advil was in question too, at least in my mind, as I began this on the same day, and have not stopped them. However, I have been assured that this most likely is NOT the source?
I only started the L-glutamine after this began to try and rebuild the tum, so I'm not sure if that is the source either? I am currently on a small dose of 1/4 tsp per day.
And, I am actually only taking half of my prescribed dose of Armour. I have continued on this same dose for awhile now and it did not cause this issue before I began the Penicillin.
I have another post going here somewhere asking specifically about the Armour and recurring fevers... that explains how long I've been on it and when the testing was. (I know... such a wimp)
I will be sure to bring up your points at my apt in the morning though. Perhaps you may have hit on something or a combination of things. Thanks again.
Posts: 7052 | From Colorado | Registered: Mar 2003
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Melanie Reber
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Hey there Amanda, Goodness, this is just all too complicated, isn't it? A prime example of why I do not like to start more than one thing at a time... one just never knows then what the cause is when something goes wrong.
I lean toward not thinking it is the Mepron specifically because I have been on it extensively in the past, and also w/out issue now until the cillins were added in. But, you are correct, it may just be the combination of meds that aren't working for me now.
I've not had cheeses in a very long time, unless you count cream cheese? I have been eating a little brown rice though.
Today I started back on the Pepto... so I am hoping that will at least hold me until tomorrow. Thank you for your help.
Posts: 7052 | From Colorado | Registered: Mar 2003
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minoucat
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Melanie -- the hubby had very similar problems. The single biggest help for him (after the standard gut flora stuff -- excellent probiotics (from Klaire labs), c.diff and H.pylori tx, yeast tx) was apple pectin. He's tried every other fiber and stopper-upper that there is. 1 tsp 3x day. Very affordable from NOW foods (combo of apple fiber and apple pectin). Didn't stop the exciting restroom moments, but greatly reduced them and made them more predictable.
So very sorry to hear that you're struggling with this. It's miserable.
If you have burning....nether orifice...issues, I found that sweet (not salted) butter is cheap and helpful. Also very good for de-hairballing the cat.
Hugs. Good luck.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
posted
I'm new to this forum and lyme disease, but Not new to unaffordable prescriptions. FYI many pharmaceutical companies offer free medicine to qualifying patients. If you think you might qualify, try contacting the company that makes the other antibiodic that you would like to try to see it they have anything like that or google free prescriptions. It's been a life saver for me.
Posts: 3 | From fl | Registered: Jul 2009
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AliG
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The Advil & Pen might have just pushed you over the edge & once the irritation started you you may be best to back off the advil & Mepron also, until you get it controlled.
The last time I took Mepron with a different ABX, it gave me the runs when it hadn't previously.
Once GI is irritated, any minor irritant could set you off.
I hope you'll be feeling better soon.
hugs & prayers, Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
bentonite clay is wonderful for stopping diarrhea -- it saved me (along with a bowel cleansing protocol and tons of probiotics) this past year when I had diarrhea for 9 straight months. You do have to take it apart from your meds, though, or it will interfere with absorption of them. I actually stopped my meds entirely due to the gut issues being so bad, so the gut healing was done in the absence of antibiotics.
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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Melanie Reber
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Miss Minou, Ali, Mini and Fmpatient, Thank you each so much for taking the time to reply... your help is so appreciated.
Well... I saw the doc this morning, and after a quick check on vitals, neuro stuff, eye stuff, reflexes, etc...
and after a lively discussion on the recent IDSA event... we finally got to the long list of current symptoms and medication issues.
I just love this physician... as she has a way of cutting right to the heart of the matter.
"Add in Amoxy, adverse effects, take away Amoxy, adverse effects subside. Add in Pen, adverse effects, take away Pen, adverse effects subside."
Yes, I suppose this really isn't rocket science afterall... and the oral cillin class is just NOT going to work for me. I left with the impression that she had been patient with my little medication experiments for long enough... and now it was time to get serious.
Testing for standard CBC and C diff were ordered along with new scripts for IM Bicillin, Mepron, Doxy, Zith, Albuterol and Lunesta to be filled ASAP.
I'm also to stop the Ibuprofen and Armour, and begin Florester (saccro-something), Caprylic Acid or Oil of Oregano for Candida control and some new med for overactive adrenal dysfunction (Phos- something).
Sooo, that's the scoop for now. I'm taking the weekend off from unnecessary meds (my last experiment) and then it is back to work on evicting the buggers Monday morning.
Thanks again to each of you! M
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Melanie, I tried to pm you but your mailbox is full. My doctor (a llmd) put me on ultra inflamx. It fixed the problem 99%. I took 2 scoops then when down to 1 a aday. It is a little expensive but worth it. It is by metagenics. If you do a search you can find the best price. He also put me on adrenal support. adrenal stim adrenal calm
Posts: 433 | From new york | Registered: Dec 2004
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Melanie Reber
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posted
Good morning Cleo (love your name),
So sorry, I am awful about that PM box... but thanks for your persistence. I'll certainly add your recommendation to my growing list of new ideas for next time... heaven forbid! For now, things have sort of calmed down a tad, so I do think we're moving in the right direction.
Thanks also for the adrenal input. For some reason, my apt notes were not given back to me, so I am sort of going on memory here... which is never a real good thing with me. But, I was told to take a specific med for the adrenal issue that begins with phoso-something.
I'll have to give a call tomorrow to clarify what that is exactly.
My BP and Pulse have come down a bit too, so I think that is also good news. 149/90 and 90 as compared to last time at 159/90 and 126. So, perhaps the adrenals are beginning to adjust themselves? I'm still not allowed to exercise, or stress over anything (HA) but this looks to be moving in the right direction.
Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
Good luck on your new combo! Sounds like a good one. I hear really good things about how bicillin works for people.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Melanie Reber
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posted
Thanks Sweetheart,
Yes, I was on IM Bicillin for about 4 months a couple of years ago. That plus the Mepron combo really did help to pull me out of a terrible reinfection/relapse and back to semi-functioning.
I just ordered it and should be able to start within a few weeks... Yay! Posts: 7052 | From Colorado | Registered: Mar 2003
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posted
i read all through this post and some GREAT ideas have been given so i dont know how much more i can add
have you had your gallbladder looked at? or if allready out, maybe need to add digestive enzymes?
deff. agree with increase in probiotic dose. i know i had to play wiht those until found "relief"
C-diff has hallmark trade of VERY foul odor (yes, gross, but if trying to save $$ on testing it is the truth. have known when pt. has that by walking into the room- so very, strong unique odor)
there is inexpensive supp. i am on that changes the body Ph- helps keep yeast down. has sodium and potassium bicoarbonate in it.
difulcan weekly and possibly add nystatin as well. liquid nystatin IS cheaper than difucan if ins. not paying for that rx (took 4 mo, for me to get it "authorized")
best wishes, miserable situation i know
-------------------- i am not a Dr. any info is only for education, suggestion or to think/research. please do not mis-intuprest as diagnostic or prescriptive, only trying to help. **
dx in 08:lyme, rmsf, bart, babs, and m.pneumonia. Posts: 422 | From TX | Registered: Oct 2008
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Melanie Reber
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Hey there My3,
Yes... I have always been amazed with the wonderful help here. I honestly don't know where I would be today w/out the extreme generosity and commitment of LymeNet members. And... although rather embarrassing, this post has turned out to be very informative, and I do hope that others can glean info from it as well.
To answer your questions, yes... I had an ultrasound of the GB a couple of years ago when extreme symptoms which pointed to GB issues sent me to the ER. That was my final ER visit and I intend it to remain that way!
Tests showed no GB issues, so that was eliminated from the differentials. After 8 hours, I left AMA.
Yes, I still am unconvinced that this is C diff, and am hoping to slide on that testing... if things continue to improve (keeping fingers crossed here).
I did ask about adding in either Diflucan or Nystatin, and doc thinks that is not a good idea in my current condition. So, I need to dig through my buried supp supply and pull out the other remedies suggested first.
No... I have no insurance, and money is quickly dwindling away, so we are trying to do this on a very tight budget... HA!
Thank you so much for your input. Posts: 7052 | From Colorado | Registered: Mar 2003
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