Sunday night I went to the emergency room with severe abdominal pain (upper/lower left quadrant, front and back – [as an aside, I have experienced pain on my left side since almost the beginning of my ABXi in April of last year –2007]. I kept contributing the discomfort to possibly die off and/or my spleen. My dr. could never find anything on x-rays or a cat scan, so I just kept plodding along, as it was not intolerable.
I was kept overnight since the pain returned as the morphine wore off. Initially, I was thought to have a kidney stone, but my urologist ruled that out.
A colonoscopy and EDG (upper endoscopy) was done on Tuesday. I was told I had gastritis (not severe) and there was a strange spot in my colon. Both were biopsied and, as of today, the results are not back yet.
I did speak with my gastroenterologist and he said the spot in my colon did not look cancerous, but rather infected. . Right now I still have discomfort/tenderness in the left area as well as nausea. I have not taken my ABXi since Sunday and am waiting until I get the final test results to resume.
I am praying that I do not have H. pylorii as the treatment for that is Pepto-Bismol, tetracycline and Flagyl for 14 days and don't want to be in a "forced pulse" (even though it would probably help me 
) I don’t believe I have H. pylor as I don’t have diarrhea or blood in my stool.
I am thinking all of this is probably just the CPNi in my gut. I did a search on the site and did see one other person colorbleu who experienced severe colon problems.
Oh, and yes it was quite fun trying to explain “why” I have been on ABX for almost a year – you know, that funny glazed-eye look the doc’s start to get, when they think you don't know what you are talking about or if they don't believe you, LOL.
This also was my first hospital stay – and it was as horrific as I read about with regard to cleanliness, attention, etc., --( it took 6 hours to get a Tylenol – lucky I wasn’t seriously ill!)
Just waiting to have an “all clear” and praying it’s nothing serious.
JeanneRoz
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVii. CFIDSii/FM diagnosed: 6/07; 100mg/doxyii/BID ~ 250 mg AZITH M/W/F ~1st Tiniii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup
Jeanne I don't know a whole
Jeanne
I don't know a whole lot about this stuff but just wanted to say my prayers are with you and hope it's nothing serious.
Rachel
CAPi for CPNi 1/08. CFSi and Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 1200mg Nacetyl, Soon to start Metronidazolei pulses.
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CAPi for Cpni 1/08. Symptoms of CFSi and Fibromyalsia, Chronic Pain. Protocol: 200mg Doxyi, 250mg MWF Azith, 2400mg NACi, Supplementsi, Soon to start Metronidazolei pulses.
RAchelb01 - thank you for
RAchelb01 - thank you for your thoughts and prayers
. I will feel better when I have the final biopsy reports.
I see from your profile you are off to a pretty agressive start -- hope you are tolerating everything! This site is a wealth of information and support.
Jeanneroz
Jeanneroz ~CPNi 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupOh, Jeanne...so sorry to
Oh, Jeanne...so sorry to know! The waiting is the worst. I wish I had something to offer other hope and best wishes. In the meantime, maybe you could obtain a copy of one of the most comphrehensive, helpful books recommended by Daisy: 'Digestive Wellness,' by Elizabeth Lipski. It's been so helpful for me, am studying and learning from it, continuously.
Am not surprised your hospital stay was nightmarish. Things sure have changed over the years with them being so short-staffed. Hadn't stayed in one in 22 years, until last year. You'd think that one owned by John Hopkins might have been an exception, but it was absolutely horrific, too. But, at least some of the docs had heard of CAPi. Yet, the ER doc told me, "I just treat trauma, so can't comment." And, the neurologist told me that "it's too experimental."
Hey, you've helped me, by the way. Toe with cellulitis is slowly getting better with Keflex. Thanks, again...could not have dealt with tendon rupture(or even the fear of it) on top of everything else.
Here's to hoping for and wishing you the very best with your biopsy results.
--Minai
RRMSi, diagnosed 2/04. NACi 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 CAP 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. USAOkay, I declare new rules
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
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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
Hi Jeanne, sorry to hear
Hi Jeanne, sorry to hear about your nasty experience. Severeal of us here suffer from chronic and sometimes severe abdominal pain, usually in the left quadrant. In my case I have diverticular disease (I am told in a small area) and IBSi. The treatment does make a difference but it is not an instant cure and the ABXi do seem to bring on more pain at first. The only occasions when I have had to take to my bed since I started this treatment have been because of abdominal pain and nausea. It has been a long time coming but I feel that recently there has been a marked improvement.
After two months of Rifampicin, I had to stop taking it for a couple of weeks because of my blood pressure, at the same time, coincidentaly I had given up eating wheat which I know I am sensitive to and lo and behold I had no pain in my abdomen for the whole two weeks. This is the first time this has happened to me in 5 years. Upon restarting the Rifampicin the pain has returned. I'm prepared to put up with that now just to get better permanently.
I don hope that your results are not bad news, but I would guess that this is all down to the CAPi.
Michèle (UK) GFAi: Wheldon CAP 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
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Michèle (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
Hi Jeanne, I well know the
Hi Jeanne, I well know the frustration waiting for test results, it has been 2 and a half weeks that I wait for the test results from the hepto-biliary center. I was promised that they would be mailed to my local MD and to my self on Monday of this week, I even paid at that time by credit card for the copies. Still no results in the mail yet. My Local MD seems pleased with the downward trend of my locally drawn labs but the results of the large battery of labs drawn there may have some impact. Waiting is really difficult, I feel trapped in a time warp. I may just start a pulse on Sunday if no results come today. Then I will be commited to take no vacation for at least 3 weeks to allow the abxi to cover any Bb that can be released from cystic form a result of the nidazole drugs.
I will be watching closely for your follow up post. Please keep us up to date.
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi, CPN+/Bb+, Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi PRN, Doxy100daily, Roxi300BID, Tinii 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support
I too have pain on the left
I too have pain on the left side of my colon (around the splenic flexure). I've had this for years - way before I caught cpni. I'm pretty sure (in my case at least) that its yeast. I know that yeast likes to punch holes in the gut. This almost always happens without blood being visible in the stools, though there are techniques for physically removing areas of yeast growth where you can see blood (I wont go into details here).
Not surprisingly bad diet aggrevates, as presumably can abxi (though haven't had serious problems in that regard with CAPi). Strong anti fungals (e.g. kolorex) really tended to inflame that particular region for me, again suggesting a fungal origin (in my case at least).
It sounds very much like it could be yeast to me.
CFSi. Started CAP 03-07.
Currently: Biaxin 1000mg + Doxyi 200mg . 10 Pulses done. Sauna every other day. D 7200IU
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Hunter: Don't think - experiment
Garcia..the splenic flexure
Garcia..the splenic flexure area is EXACTLY where this "strange looking spot" (as the gastro described it) is located and that is where the pain is -- as well as across the transverse colon area and left stomach.
I was just tested for yeast prior to this incident and the test was negative, plus I take Capryol, Bentonite clay and psyllium. So it's not yeast.
I also just read an article that EBVi can cause an infection in the colon, who knows, it probably is the CPNi and the biopsy only determines cancer or not. (I specifically asked if the specimen would be cultured for bacteria, LOL)
I am sure my diet is not the greatest, so will be working on that. Thans so much for your comments.
Jeanneroz~CPN 4/2007; HHV6, EBV, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupHi Louise - Geesh, I can't
Hi Louise - Geesh, I can't believe it's taking this long for your results! If it's like one experience I had the "order" to print out and send you the lab results may be sitting in someone's inbox to process. I hope they come soon, hmmm I know you are anxious but just as a double-check, maybe you should wait till you get the results to be sure. Because if you start, as you stated you can't stop for three weeks. Keep me posted!
Jeanneroz ~CPNi 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupHello Michele.... thank you
Hello Michele.... thank you for your concern. I am usually pretty stoic and can tolerate pain, but this was pretty intense. Yeah, I wine and b**tch about little things but it takes a lot to send me to the hospital!
Diverticulitis was something else they thought could be going on but ultimately it' s probably the cpni.
I also watch how much gluten I eat -- I feel better when I obstain, plus I don't have celiac disease but tend to be "intolerant" if I eat too much.
Something you might try is liquid aloe Vera juice -- it does calm and heal the stomach if it's nothing serious.
Thank you for your comments...
Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupMack... the sad part is the
Mack... the sad part is the biopsy was done on TUESDAY! So yes, I would have thought the results would be in on Friday... so did the gastro!
Jeanneroz ~CPNi 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupMinai.. I am so happy your
Minai.. I am so happy your toe is healing (without Levaquin ;0)!! and that my input was helpful.
I am still experiencing major problems walking, my right knee feels "blown" and I have to use assistance (wheelchair, carts, etc.) outside of my home. I have no strength in my legs for normal activity outside of the house because of my inactivity for so many months.
Thank you for your comments and book suggestion .... I actually have the book "Digestive Wellness" -- I bought it about 3 months ago and it is quite informative.
I guess I was sooooo digusted with the filth and lack of cleanliness. Only ONE doctor or nurse washed their hands before touching me or working with my IV's etc. My husband had to literally almost put a gag in my mouth to keep me from speaking out about "little things", LOL!
I was just "seeing" what I have read about and couldn't believe it ;0
Thank you for your thoughts and comments :)
Jeanneroz ~CPNi 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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JeanneRoz~CPNi diagnosed & started protocol 4/2007, also HHV6, EBVi. CFIDSi/FM diagnosed: 6/07; 100mg/doxyi/BID ~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. SupHey sunshine! I am sorry I
Hey sunshine!
I am sorry I missed your post until this late time.
I hope every thing turns out to be "just CPni". At least we sort of know how to deal with it.
I wonder if you should go & have one of those fancy food allergy tests, my natural M.D. wants me to do that. He says, it is quite surprising what people are allergic to & never realized. I think I have mentioned this in another post, the book "You are what you Eat" is quite good as well.
I am praying for you
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpn, (insomnia - melatonini, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#14 1000 mg X 5 days 9-19-08