I'm a 45 yr old male. Until the following I've had no health problems. Jan 02 begin frequent periods of diarrhea lasting a few days a month. Doctor tested kidney, thyroid, TB, heart, mono & Epstein-Barr virus (results normal). Nov 02: woke up with an asymmetrical swollen tonsil & 2 doses of antibiotics did nothing. March 03: night sweats nightly lasting 2
Wow, that is one of the more comprehensive workups that I have read. On one hand, if there were a more serious diagnosis present, the many tests that were done would have found it. On the other, you are still having symptoms.
To be honest, I cannot think of any other testing that has been left out. IBS certainly remains a possibility - especially since other GI disease have been ruled out. Treatment should be optimized - possibly with anti-spasmodic agents and increasing the fiber intake.
You may want to inquire about a second GI opinion.
Followup with your personal physician is essential.
This answer is not intended as and does not substitute for medical advice - the information presented is for patient education only. Please see your personal physician for further evaluation of your individual case.
It sounds to me like you might be having a reaction to the antibiotics you have been taking....visit www.fqvictims.org
A website with information on fluoroquinolone antibiotics and side effects. (Cipro is a fluoroquinolone)
Have you been tested for clostridium difficile? or other types of bacteria? Also parasites? Overgrowth of yeast can also affect not only your digestive tract but your whole body.
Sorry to hear of your problems. I think one big thing you mentioned has been overlooked, and you need to see someone more familiar with these problems. You mentioned your biopsies showed eosinophilic esophagitis. This condition alone can be responsible for most of your symptoms. If you had a systemic eosinophilic condition it could explain all your problems. If you have not looked it up, research it. My daughter has a systemic eosinophilic syndrome. Right now her GI is the worst. The pain, blood traces, chronic diarrhea, biopsies actually showing abundant eosinophils, swollen tonsils, all of it can be linked back to the eosinophils. These are white blood cells that attack your organs like they are foreign. SOme cases are more allergic reactions to food and some are immune based, like an autoimmune problem. These cells inflame and damage the tissues they are in. Many times it is mistaken for GERD, which is what it sounds like drs were thinking with you, having you on Previcid. Also saying you had diverticulis, they must have seen inflammation in the biopsies of your colon. The eosinophils are very likely through your entire GI tract. They are patchy, and therefore sometimes it is hard to get just the right spot on biopsy, because visually there is many times no change in the appearence of the normal areas and the areas affected. You can have an area of your tissues completely ate up and damaged from cells, right next to an area that is perfectly normal. In my daughter's case it took 5 sets of scopes before the eosinophils were found. She had already had them found in her lungs, sinus, high blood counts, and nerves so all her GI problems were highly suspected to also be from eosinophils, that is why her drs kept looking. This disease is fairly rare, and many drs are not familair with it. You may need to go to someone that deals with it more. You may even need to go out of your area. We have had to go to Cincinnati, the world's leading experts are there and the first scope they did showed these cells all through her GI tract after our drs here in Dallas had done repeated scopes. The drs there told us there can be very slight changes in the appearence that most drs who never have seen this or have only saw it 1-2 times would miss during scopes. We have done a great deal of research and have seen the best drs in the world for this, if you have any questions just let me know.
Cindy - thanks very much for your opinion, which sure does sound as though it could be the answer. I did a bit of research on eosinophilic esophagitis online and the information I read makes me think that this might be my problem. I have an appointment early November and I will bring this up.
When I was younger I had a slight case of Asthma, but it doesn't bother me much anymore. I sometimes wheeze a bit, especially if my allergies kick in when I am around dogs or if I am in a smoke environment.
I forgot to mention. Do you know your cbc counts? If not ask your dr specifically what your eosinophil counts are. I would get copies of everything they did. Many drs will blow off fairly high counts relating them to allergies. If you have high blood counts and biopsy proven eosinophilic inflammation, as well as other organ involvement it could very well be one of the systemic eosiophilic syndromes. Look up hypereosinophilic syndrome and Churg-Strauss, the e medicine articles are both very good about these diseases. Do you have asthma by the way? The foot pain you mention could be neuropathy, which occurs in Churg-Strauss mostly, but can also occur in the other syndrome. The night sweats, and all the oher problems are all symptoms of these diseases.
It varies lab to lab, but 5% is usually the cut off. SO yours are running slightly high. As I said many drs contribute that to allergies. Also were you on oral steroids such as prednisone at the time, they will surely mask a high eos count. It is usally the systemic eosinophilic diseases that run a high count. You can certainly see high blood counts just being in the GI but not always. Many with eosinophilic gastroenteritis, never have elevated blood eos. Also you mentioned your food allergy tests were negative. The drs in Cincinnati, don't use the RAST tests because they are unreliable. I surley hope you find the answers, I know how frustrating it is.
John Sorry to hear about your issues! I am kind of in the same boat with similar sitituation with no results or answers, Mayo Clinic twice! My question is for Cindy I am wondering what clinic she took her daughter too? I am hoping she may read this and post where they went in Cincinnati or was it a childrens hospital only?I would consider going there as I am sick and tired of being sick and tired!Oddly enough my symptoms started in Jan 02 as well and they have tested and tested and no diagnosis,prior to that perfect health,really strange.
Anyways Good Luck John,I hope you find some answers too.
I have eosinophilic gastroenteritis with chronic diarrhea, stomach pains,etc. My doctors want to send me out of state to a specialist. They have various opinions----------Mayo in MN, Mayo in AZ and Cincinnati. I was interested in your comments about Cincinnati. Your opinion would be that this is the best place to go? I don't want to travel too far and find there is nothing to be done for me.
We went to Cincinnati Children's Medical Center. They are the leading experts in the world on eosinophilic GI disease. They actually have an eosinophilic disease center. I know it is a Children's Hospital but the director of the eosinophilic program Dr. Marc Rothenberg is currently doing a study on the anti-IL-5 drug and is looking for those(of any age) with any of the hypereosinophilic syndromes. Right now you have to be over 18 to even get into the study, so all they are taking is adults. You more than likely need an already confirmed diagnosis of eosinophilic gastroenteritis to get in the study. This disease is a very hard disease to find a good doctor to treat, even those that are considered "experts" have only had a handful of patients. My daughter has a systemic eosinophilic disease as you may have read. We have gone to pretty much all the leading drs across the country. We have gone to Texas Children's, National Jewish in Denver, Boston Children's, and Brigham and Women's in Boston seeing an adult pulmonologist who specializes in the systemic disease called Churg-Strauss they think she has. Of them all these drs in Cincinnati are the most knowledgeable by far on the GI disease. The pulmo in Boston is very knowledgeable on the systemic eosinophilic diseases. I have told many on the support groups I am on about Cincinnati and many have e-mailed Dr. Rothenberg, or his research assistant, Sean Jameson. They know of the leading adult drs to see if your case is not confirmed for their study, or can arrrange to see you their self if it is. These are all very nice,caring people and if they can't help they will point you in the right direction. Look up their information on the CIncinnati children's website, and contact Sean. He is very nice and very knowledgeable, the site is www.cincinnatichildrens.org/svc/prog/eosinophilic/default.htm Look it up and see what you think. I have learned from them how much this disease is overlooked and how much pathologist and GI drs really do not know what they are doing when it comes to the biopsies and reading the pathology for this. A Dr. Philip Putnam is the head GI there doing the eos research. WHen he scopes my daughter he takes 40-50 biopsies, the average dr takes 5-10, maybe a few more. This disease is very patchy and he says to take anything less is fooling yourself to think you will catch it. My opinion after seeing drs all over the country is start with them, if they can't see you get their opinion on who they recommend. As far as the Mayo Clinic goes I know some peopl ethat have gone there and to John's Hopkins and were happy with their care. We never went to either because the adults drs there are the ones specializing in eos disease, and would not take a child. Let me know if I can help in any way, it has been a very long road but I have learned much along the way and am glad any time I can help anyone else who is suffering with this.
Thanks so much for all the information. I do have a question. If I go to Cincinnati, would it just be for the trials? Or do they treat you with other things? How is your daughter being treated? If the trial drug works, are you allowed to stay on it or are you finished at the end of the trial? I plan to call or email them this week. It's sounding more and more like that's the place to go.
On another board someone wrote that the eos specialist had left the Mayo clinic in MN and her trip was wasted. My GI said there was an eos specialist there, but her information could be old. Her IBS info was. LOL It took me years to convince her I had something more than that.
Thanks very much for all your help. I truly appreciate the time it takes you to write it. : )
If you go, you will only get the meds during the drug trial. I think the one they are doing right now is for 9 months. The anti IL-5 is not FDA approved yet, so you can only get it through trials. Many I know that did the first trial said is was like a miracle for them. All their symptoms went away, and the blood counts for eos went to 0. They will give you opinions for other treatments, but you will more than likely have to go through your dr at home. They have taken over my daughter's case becasue she has so much going on. She has eos in 4 organs. They want her to get off steroids as much as possible. They started her on a low dose of a chemo drug called methotrexate, and she also takes 10mg prednisone(steroids). They did say if all she had was gut disease she would try entocort and 5-ASA, but since her disease is all over she needed more aggressive treatment. Her treatment does not seem to be working and she has been on large doses of IV steroids to control the pain, diarrhea, and dry heaving. We actually just went back to CIncinnati last week and all her biopsies were clear. But because of all the steroids she has had they are not sure what worked. They are thinking of the most aggressive chemo drug but have to be certain the other drug will not work first, so we will give it some more time, and not treat her with high dose steroids when she gets sick. They just said to rescope her and then we will know more of what is going on and what to do. Her case is complicated, and most do not have other organ involvement. If I were you I would try going there, they can really help get you on the right path, and help your drs at home know what to do and how to treat this. Let us know what you do. Take care.
Cindy, I'm so sorry to hear about your daughter's case. It sounds beyond miserable. : ( I know how horrible it is to have ill children. Not an easy thing at all.
I'm thinking that Cincinnati is definitely the place for me to go. Thanks for all your information. I intend to call this week and see what they have to say. I don't know how long it takes to get in, but at this point, I'd just as soon wait until next year anyway. There are the holidays and a new grandchild due in early December. I don't want to miss any of that.
Cindy, thank you for your input. Your posts have been very helpful!
In the last ten days I've had appointments with two GI Doctors who are taking care of me. Both of them are not ready to diagnosis an eosinopholic condition. I believe their main reason for not thinking it is related to esoniphils is because aside from my symptoms, I feel generally ok.
One of the doctors is at John's Hopkins in Baltimore. He ordered an Eosinophilic Count blood test which came back at 80. He says that is a normal count. Even though two esophagus biopsies show "numerous eosinophils", they tell me that this is normal with reflux esophagitis.
Interesting that over the last few weeks I have been wheezing more and every night lying in bed I hear clicking / ticking sounds when I breathe. Also have seen an increase in my blood pressure, which has always been normal but is now high.
Do you know the name of the doctor that the people you refered to saw at Hopkins?
I have another appointment next week at Hopkins and I will ask for the pathology information you suggest and also inquire about Dr. John Stone. I did another colonoscopy last week and will get the biopsy results at the same appointment. I have no idea how many cases of E-G my doctors have treated, but I will ask.
Thanks again, Cindy. You are very helpful.
Hope you and your family have a Happy Thanksgiving!
It is good to hear from you again. Sorry to hear the drs have not diagnosed anything yet. The dr I mentioned from John's Hopkins is Dr. John Stone, he is in rheumatology. He is an expert in Churg-Strauss the systemic eosinophilic disease I mentioned that my daughter has. You mentioned you generally feel OK besides your symptoms. WIth eosinophilic GI disease it is a disease that waxes and wanes in symptoms. I know the reflux esophagitis can have some eosinophils in the esophagus, but an abudance of eos is not common for reflux alone. If I were you I would e-mail Dr. Philip Putnam at Cincinnati CHildren's in their GI dept and let him know your situation, you will need to write word for word what the pathology report says about the eos, if possible call the pathology dept and get the actual number of eos they saw per high power field on your slides. That will be most helpful. Ask if you should persue this for an eosinophilic diagnosis, or if he thinks it sounds like reflux alone. He will let you know what he thinks. Most people with eos in GI disease alone have normal blood eos counts, so the fact they are normal means nothing in this disease. Do you know if the drs you are seeing treat many people with eosinophilic gastroenteriris? If not I would ask how many they have treated. Most drs have only treated a handful of cases. Let me know if you write Dr. Putnam, I really think he would point you in the right direction, and if he thinks it is eosinophilic esophagitis he knows adult drs you could see. Take care.
Cindy - I will email you.
I still have the foot pain. Neuropathy has been mentioned, but not confirmed. I go back to the podiatrist next week and I hope to get some advice. Although, he seems to be uncertain himself.
Hope you and your family also have a great Thanksgiving. I was just going to let you know it would be good to ask about Dr. Stone, but the drs that treat the systemic eosinophilic diseases are not as familiar with the effects it has on the GI tract. Dr. Putnam that I mentioned is considered the leading expert in the world on this EG disease, and he is great to e-mail back to you. I would consult with Dr. Stone and just see what he thinks after you have confirmation of the GI diagnosis. One lady I know that saw him had a very hard time getting him to treat her properly, before she had a concrete diagnosis. He later called her and apologised once he reviewed her records, but she was pretty put out things were bad for so long. I do know of others that had no complaints, but they were also easily confirmed cases. SOme had eos counts in the blood of 3000-5000, with the asthma, and eos infiltrating other organs, it is easy to know there are big problems there. Also Dr. Putnam has an article saying that a high percentage of the kids he sees with EG also have asthma. SO those two alone are linked. Are you still having foot pain, and has any dr ever said it could be neuropathy? By the way this link is about to be archived, it anyone wants to e-mail me direct my e-mial is ***@****. Have a great holiday!!
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