arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
I know it's been a little while since I last posted any kind of update about myself and I've received a few PMs and e-mails of concern so I wanted to let you all know that I'm still hanging in there but having a rough time of it.
My GI problems are still really bad and I still have no answers as to what is causing them, although the more I research and talk to other people with motility disorders the more I am sure that's what I'm dealing with.
I have found a Yahoo group for people with Gastroparesis and other motility disorders and I think they will be a big help for me in sorting this out.
My diet is very limited right now (broth, jello, baby food, oyster crackers/saltines, occasionally something a little more ambitious like chicken or vegetable soup but avoiding any meat). If I try to deviate from these foods, I end up in a lot of pain, and even with these foods there is pain but it's manageable and I deal with it by using my hot rice pack on my belly all the time while at home.
I'm losing weight - even my ``skinny'' pants are hanging off of me and I'm down to a weight that I can never remember being at (although through my adolescence I was always on the heavy side). I'm most likely going to be firing my current GI in the very near future, but I need to call him tomorrow just to see if he's going to do anything else for me first.
But despite all this, I'm still hanging in and trying to do some things each week that refresh my soul and make me smile. Yesterday I was able to go spend the afternoon and evening with a friend which was great. I'm still clawing on to working a few hours a week, although only in short, 2-hour stints (cut in half from my previous 4-hour days).
I'm holding close to the things that inspire me and trying to weed out the unnecessary things that only zap my energy.
So, that's a little update on me. I hope it doesn't make you all worry more about me, it was meant to alleviate some of your concerns. I'm hoping to get this sorted out before I lose too much more weight and become malnourished any further (I'm sure I'm already malnourished to some extent and I believe my low WBCs are a reflection of that).
Right now I just need to find a good GI who will take this seriously, who knows motility disorders, and will be able to help me get this all sorted out. I will try to keep you all updated periodically but I'm not sure how often I'll be up to it so if you don't hear from me for a while, try not to worry.
I do appreciate your e-mails and PMs - they help keep my spirits up and remind me how much you all care!
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Gosh, Annie.
I'm sad to hear that things aren't much better up your way.
I sure do NOT want to hear that we mightn't be hearing from you for a while and that we're 'not to worry'... 'cause that won't happen!
Hope you can find a decent GI specialist to get to the bottom of your nutrition problems. You've sure been through the wringer. Seems that's got to be solved before you can think about getting better. Please hang in there and don't NOT keep us posted...!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
So gald you wrote, I was thinking about you today!
Do you live with people? I forget, coz if you dont then I WILL worry, but if you do then maybe I WONT worry so much if I know you have loved ones close by to keep an eye on you.
I like what you have written about finding time and energy for those things that re-energize us and leaving the other things OUT.
I also like the idea of firing any doc that is crappy.
Hang in there! Trails Posts: 1950 | From New Mexico | Registered: Sep 2001
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posted
Annie, Have you been tested for Celiac disease? Even if you have and were neg., you might want to try a gluten free diet for a while to see if it helps.
If you havent been tested, I would ask for it. Dont go on the gluten free diet before being tested as it will alter the results.
I had a lot of similar symptoms before going on a GF diet. Hope you get some relief soon. Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Oh arg,
I hate to hear that it is still so challenging.
I know it is probably annoying at times to get suggestions when you have tried everything.
But...have you tried something for stomach pain. Hycosamine has been a big help to may daughter as she was having trouble with eating because of the lower abdominal pain. I don't like to just treat symptoms, but stomach is improving slowly on abx and we are now weaning off.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for the supportive responses. I just woke up a few minutes ago (slept until about noon today and woke up with a headache - not going to be the best day but thankfully I can just stay in my PJs in bed) and it was nice to see the support. My breakfast this morning is a jar of baby food Rice Cereal & Apples with Cinnamon and it's actually not that bad if you heat it up (I've found that's the key to making baby food taste better - heating it up).
Michelle, I guess it was silly of me to think you wouldn't worry so I will do my best to keep you all updated, even if it's just to post a few sentences every week to let you know that I'm still hanging in and if there's any new news to report. You can also always visit my Lyme journal which I update everyday with the goings on in my life and how I'm doing. So if you're really worried, take a little detour over there to make sure I'm still managing okay.
Trails, I do live with my parents and younger brother and sister (which is sometimes very trying - more my parents than my siblings) so I'm not alone here. Still, I mostly take care of myself but I guess it's good to have them around if I need the extra help.
Cindy, I haven't been tested for Celiac disease but I was on a gluten free diet for a few months last spring because I was diagnosed with Hashimoto's and my LLMD said that a gluten free diet can be helpful for that, too. The gluten free diet didn't help anything and just made it a lot more difficult to find things to eat. Celiac disease is in the back of my mind and I will look into it but I'm not sure that's it.
Char, I haven't tried anything for stomach pain - no doctor has seen fit to give me anything for it. My pain is mostly in my upper abdomin, though (it does pop down to the lower abdomin sometimes, too, as it moves around but it's mainly the upper quadrants). Is the med your daughter was/is on just for lower abdominal pain?
Thanks again, everyone. I'll try to keep you updated as things upfold. I plan to call my GI dr. this afternoon to see what he wants to do now (hopefully it's something and not just "wait and see for the next 6 weeks").
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
hope you find some relief!!
prayers your way!
hopeful123
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Annie-
The hycosamine isn't specifically for lower abdominal pain, as I understand it. It did knock out GI pain that tylenol, zantac, etc. did not touch.
She actually had migrating pains in digestive tract. We were worried that she had a stray gallstone moving around, but fortunately that was not the case.
We are greatful that her tummy is healing up with the IV abx.
The pain reliever has been a huge help.
These dr better "see fit" to get you some help or we are coming over to do something about it!
Thanks for the update. I've been wondering about you!
Have you tried Theralac (the new probiotic)? Jake was having a lot of stomach pain and his LLMD said to try digestive enzymes, L-glutamine, MSM or aloe vera juice. He did give us more suggestions but I can't remember them right now.
I hope you feel better soon!
-------------------- Peggy
~ ~ Hope is a powerful medicine. ~ ~ Posts: 2775 | From MN | Registered: Apr 2001
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bettyg
Unregistered
posted
Annie, my thoughts & prayers headed your way to get the correct LLMD gi dr. to help you put on weight again.
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
I'm dragging this up because I want to give you a little update on how my appointment with my PCP went this morning but I'm going to try to keep it shortish (I'm at work right now for a few hours but there's not much to do and my boss is off at a meeting elsewhere).
Overall, I feel that the appointment went well - she had the long e-mail I sent her earlier this week and she'd printed it out to make sure we went over everything I had mentioned in it.
She was very concerned that I've lost 10 lbs. since I was last in her office a month ago and really did seem to want to help in whatever way she could. (That 10 lbs. makes a total of more than 15 lbs. since all my GI problems started at the beginning of Jan.)
Part of the appointment was spent talking about the tailspin crash I've been in in general since the end of December (just before the GI stuff kicked into high gear) and the sleep study that seemed to be the last straw for that (unfortunately, it seemed like she didn't understand WHY a night of no sleep (i.e. the sleep study) would cause such a crash and seemed to be suggesting to some extent that it's the way my brain is perceiving things - aka "it's all in my head" - although she never actually said those words).
Anyway, she obviously doesn't know much at all about Gastroparesis and motility disorders (what is most likely causing my GI problems) and when I mentioned them all that she was thinking about was esophageal motility disorders which is NOT what I'm experiencing. So I told her it's much more in my stomach and intestines.
We talked about my symptoms a little bit, about how I have abdominal pain and nausea when I eat and the nausea gets really bad when I stray from my 4 or 5 "safe foods", to the point where I really feel like I'm going to throw up and just WANT to throw up to feel better. That's where she started saying maybe it's a bulimic response. GRRR!
I got very quiet then and I think she could tell I wasn't happy at all with her bringing up that card. She kind of dropped that but throughout the appointment she seemed to be dropping hints that she suspects things are happening in my brain that are causing things to happen that I'm not aware of (I'm sure that's happening to some extent (the mind-body connection is an interesting topic, but not one I needed brought up today), but I really resent people suggesting that my pains and symptoms aren't real).
So, she's referring me to a new GI - a woman - who she said is more in tune and listens better than my old GI and if I ask for a motility study (this is when she was thinking I was talking about the esophageal motility problems) she'd most likely be find doing it.
So, I'll make an appointment with her (need to look up her information and double check to make sure she's in my insurance network), hopefully get in within the next week or to (keeping my fingers crossed on that), and either she'll figure things out or she'll run some tests and send me to someone else. I don't even want to think about any other possibilities at this point.
My PCP also made some suggestions of things to try to increase my calories - keep pushing the baby food especially (that's the thing that fills me up the most, though, and makes it more difficult for me to eat more throughout the day - a double edged sword), try making some pudding with part rice milk, part water, and part juice (she suggested pear juice), and try making some Tapioca pudding with rice milk.
Other than that, I go back to see her in 4 weeks to kind of monitor me and see how things are going and see what my weight is and all that stuff. Oh, and I got blood drawn for a CBC (which my LLMD wanted run this week since my WBCs were really low and dropping over the last month).
Well, I guess that ended up being kind of longer than I anticipated but I got going and wanted to get in the details, I guess. I really hope I can get in with this new GI SOON as I really can't afford to lose much more weight. Thanks so much for the support!
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Another quick update on things. I'm firing my PCP and will be on the hunt for a new one (got a call from her office early on Friday morning with the name of another GI (I couldn't get an appt. with the one she suggested at my appt.) and the name of an eating disorder specialist making it very clear that she just doesn't know me at all and wasn't letting it drop).
BUT, just when I was desparate and not sure at all what I was going to do, my current GI, the one I thought didn't think I could have gastroparesis or a motility disorder and wouldn't do further testing called me on 7:30 on Friday night! Yes, a doctor called me at 7:30 pm on a FRIDAY NIGHT! Simply amazing! (I truly believe this is because there were a lot of people - a number of my friends from an online Dysautonomia group and also an online gastroparesis group were thinking about me on Friday and somewhere in the cosmos something happened and fell into place. I'm still kind of not sure it really happened.
Anyway, so my GI (Dr. B) called to see how I was doing (keep in mind it's been 4 weeks since I saw him and I haven't talked to him since then). I told him I wasn't doing well at all, still not able to eat, awful abd. pain, nausea, losing weight, the Miralax just caused diarrhea, etc. He was very concerned and decided first to do another endoscopy but then changed his mind and is going to do a GI series. If that's normal, then he's going to send me up to Boston to one of the motility clinics up there. So things are looking up!
I'm not sure yet what day my GI series will be done on (his office will call on Mon. or Tues. to schedule for sometime this week). I was hoping to be sent up to Boston to a motility clinic (I'm going there for a specific problem, not for Lyme, so I'm not worried about Lyme problems up there). I'm glad we'll hopefully finally get to the bottom of this. I don't know what the solution will be but I feel like my GI is taking me seriously NOW (didn't feel that way before but now he realizes it's a serious situation that can't just be fixed with a laxitive) and he's going to really work through this and figure out what's going on.
I'll let you all know how the wonderful GI series goes (wonderful yummy barium, ) and if I'll be sent up to Boston and where and all that stuff.
posted
Ugh...Barium...that stuff is so sick making.
It's scary that you lost 15 pounds just since the beginning of January. I hope they find the cause soon! Good luck the the GI, it doesn't sound like much fun from what I've read.
posted
Annie, Finally! Some action! You are a real trooper. Hang in there. You are in my prayers Cindy
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for all the support and good thoughts.
Just wanted to let you know my upper GI series and small bowel follow through is scheduled for Tuesday the 21st (a week from today) bright and early at 8:15am (I hate early morning appointments and tests). Until then I have my nausea meds (Zofran and Phenergan) and my hot rice pack for my abdomin and I'm just trying to lay low. I'm concentrating on getting in fluids at this point and food (if you can consider what I'm able to "eat" food) is second to that.
I'll update as things change or more information comes in!
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
one good thing about morning tests with your tum tum is that you get them over early in the day...you have the WHOLE rest of the day to feel like crap!
lol, trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I'm about to leave now for the GI series. I'm half asleep but just hoping the barium doesn't taste too bad and the test comes up with something! I'll update when I have some news.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I had the GI series and small bowel follow through done this morning. It was a long morning of testing (just over 4 hours) but I held up okay. The radiologist/doctor guy (not sure exactly what he was but his name was dr. something-or-other) said everything looked okay which basically means no Chron's disease or anything like that. I'll wait to hear from my GI dr. about anything specific and see what the next step is now.
Hopefully I will get in to see my GI dr. very soon as I'm still not able to eat much at all (I'm keeping a food diary and my average caloric intake is around 300-400 calories), losing weight, and not doing well. I'm doing my best to eat what I can, trying to find liquids I can handle, and just generally manage for now.
I'll try to keep updating as things happen and as I hopefully get some relief and am able to get some nutrition in.
shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Okay, Annie, you got through this round of fun. Get some rest.
Pax, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hey arg82
sorry to hear about your Gi problems and hope you feel better soon.
Maybe you could pm Nal,as she is going thru the exact same thing.
Feel better soon and hope they can figure out the cause and you can keep your weight up
take care
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
Annie, glad to hear this test is done, and it's not Chrone's disease. Good luck on other testings. Wish I could give you my appetite and many extra lbs! Bettyg
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
still praying for yer
ps i think it's outrageous that the one doctor thought you had an eating disorder. duccccccck
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I remember you from years ago... sad to hear you are still sick... was hoping you would have gotten better by now.
I have gastropariesis although i still havent learned how to spell it as you can see...
Have you been offically diagnosed with it yet....
If so they should prescribe reglean and give you the gastroparesis diet list of dos and donts.
I was diagnosed by an endoscopy.... did you have one of these done?
Also i dont know if you are on pain meds but then can make the gastroparesis worse.
I know how painful it can be ....unfortunately I dont have any solutions .... I never found anything that worked....sorry.
Before I was diagnosed I was living off ensure... It is a liquid with lots of vitamins so you might want to try it ..... I like the coffee flavor.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for the replies. I haven't talked to my GI dr. yet about the results (so I don't know the final word on them yet) or what we're doing next but I'll let you know when I do.
Azure, I've been around pretty consistently for a long time. Unfortunately I'm still sick and it seems my health continues to confuse everyone.
I haven't been officially diagnosed with gastroparesis but we're pretty sure I have a motility disorder of some sort, although it's unclear whether it's with my stomach or further down in my intestines. I belong to a group for people with GP so I know quite a bit about it. I've done a lot of research on it, too.
I haven't had an endoscopy done in this round of testing (had one back in Oct. 2004 when I had my last bad bout of these symptoms but it was normal). I'm going to be sent up to Boston to a motility clinic to have the specialized testing that they can offer. I'm not on any pain meds beyond motrin (and migraine meds).
I have gone through all the liquid nutrition drinks out there and I can't tolerate any of them mainly because they all have too high a fat content (and most are also way too high in sugar). I used to be able to tolerate Boost and I always kept some around for when I wasn't able to eat solids as well but with this crash I'm not able to tolerate that or any others, and I've tried a bunch of them. Thanks for the suggestion, though.
I am fairly new to this and am amazed by your story...I visited your site. You are such a creative person!
Loved all your photos and the great song All Will Be Well. I go to your site to hear the song, it puts me in such a good mood.
You are an inspiration to us all fighting this disease together. I am sending positive thoughts your way--I am in CT (near Lyme) where I was misdiagnosed for a few years at least.
You would think in New England between the educated doctors and concentration of disease, we would be better off...guess not.
Best to you. Hope you find something that agrees with your sensitive GI system. Kim
-------------------- We are spiritual beings on a human journey...
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
I've been quiet lately but I've been reading some posts (or at least skimming them) when I'm up to it and responding when it's something I really know a lot about or something.
Anyway, I wanted to let you know that I talked to my GI dr. today (after I called HIM and left a message to have him call me, who knows how long it would have taken for him to call me if I hadn't initiated it). I'm really not pleased with the way he's handling things and his lack of concern about my inability to eat (I'm only able to get in an average of 300 calories a day because of the bad nausea, pain, and feeling full quickly).
Anyway, the GI series I had done last week was normal (not a surprise) and my GI doctor seemed to have completely forgotten about the conversation we had a few weeks ago when we decided I'd have the GI series and then if that was normal he'd send me up to Boston to see a motility specialist there. Instead of doing that, all he said was that he thinks I just have IBS or dyspepsia!
But I didn't just accept that since I KNOW those are kind of "throw away" diagnosis that are given when the doctor doesn't really know what's going on and I KNOW he hasn't looked into this enough to be able to say it isn't anything else.
So, I brought up our last conversation and after a little reminding he remembered it. He didn't seem as open to the possibility of me having GP or a motility disorder now as he did a few weeks ago but he said he'll call the motility specialist in Boston on Monday. I don't know how long it will take to get in there, I don't know much of anything but hopefully SOMETHING will come of this.
I don't know how long it would have taken for him to call me if I hadn't called him. He obviously doesn't have any idea how badly I'm doing and how serious the situation is.
Before getting off the phone with him, I asked if there's anything in the mean time that I can do. We talked for a minute about what I'm able to tolerate eating (he wasn't concerned AT ALL, or at least didn't seem concerned, at the severity of my symptoms and the tiny bit I'm able to eat) and he went through suggestions of all the things I've already tried and found to cause too much pain and nausea to tolerate (things with dairy, boost, ensure, soy, etc.). So he said he doesn't have anything he can do for me now but send me to the motility doctor.
I'm so frustrated because I feel like he should be more concerned and want to see me (I haven't seen him for 6+ weeks at this point). He has this way of apologizing and trying to reassure me that just makes me more frustrated because it's like he doesn't have any CLUE what's going on!
Sorry to vent like that. I didn't realize just how frustrated and upset I was until I started writing this. I HATE this waiting game, trying to get in the food I can handle, being so depressed when I add up my caloric intake at the end of the day and it looks so awful (usually if it's way too low I try to drink some juice to bring it up a little bit but it's still really awful).
I'm so exhausted. I can't be on any Lyme treatment because I can't handle medications (I was previously doing pretty well on IV Primaxin and then had this huge crash around the holidays) and things are just bad.
I do go to see my LLMD next Thursday (the 9th) and I KNOW he's not going to be happy with how I'm doing and he's going to be very concerned but unfortunately he's 3+ hours away and out of state so there's not a whole lot he can do. He is willing to prescribe Reglan, a med for motility disorders, so there's that.
So, that's the latest update of what's going on with my situation. Thanks for listening to my vent/update. As you can tell I'm not feeling great tonight but hopefully a nice bath tonight will make me feel a little better.
I am very worried about you. Eating so little for so long, and all the intestinal distress that comes with it should be treated with much more proative response from a care provider.
I know you have said that you would rather not have ideas thrown at you, and I can certainly understand that. I felt the same way when my son's case reached levels of complication that were this confusing.
Just a couple of things - I noticed on the other Lyme board there have been abtracts posted on borellia causing symptoms you describe, and paralisis of abdominal wall muscles.
Thought you might want to take a peek at them, tho I could not begin to say if that info will help you at all.
Another thing that tugs at me to ask, is whether you have considered employing a holistic care practitioner along the lines of the one Doc H. in CA is collaborating with, or similar to Doc K in Seattle..someone of thet 'caliber' and experience.
- as part of a 'team approach' to help you. I only ask this because I have experienced and seen in others as long term LL care reaches this level of complication.. those kinds of practitioners (if they are good) can reach levels of care and focus that traditionsal Docs do not seem to.
They do not tend to get stumped or blocked, and respond proactively in situations like this, where is seems a part of your body is shutting down.
I am very worried because Kira (I think thbat was her name?)...over time, ran into the same kinds of serious issues with food intake, and this should be considered a VERY, VERY serious problem by an MD, yet I do not know that they have the kind of focus and tools that can help you heal effectively.
Feel free to skip right over this if it is not anything you feel is helpful at this point in time. It is merely a suggestion, only you can know if it is worth considering or not. You are a very knowledgeable patient and clearly a very active participant in your own care.
No matter what, I am praying for relief for you soon.
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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posted
I lost a lot of weight, but it was definitely due to babesia and when treated enough, the weight came back. I never was nauseated, ate normally but the weight just kept falling off.
So, my experience was not the same. But here are a few thoughts, based on what you have said and what it says about gastric syphilis in an old syphillis textbook. I bought this because there are some similarities with lyme, and nobody has written a book like this on lyme. (What they said about herxheimers in bone turned out to be true for both lyme and syphilis.)
In this book, it says that true syphilis of the stomach was rare. The symptoms were mostly produced neurologically. They seldom found actual lesions in the stomach and in those cases I would suspect h. pylori. At the time, the cause of stomach ulcers was not known. So, I bet they had some patients with both syphilis and h. pylori.
It also said that in syphilis patients with stomach symptoms, it was common for them to be hypoacid. In other words, not enough acid being secreted to help in digestion.
And finally, it said the stomach symptoms would be subdued by treatment for neurosyphilis. Since you are not currently being treated for Lyme and the onset of this weight loss is recent, I would bet that it is lack of lyme treatment which is the cause of your stomach problems.
Posts: 8430 | From Not available | Registered: Oct 2000
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Thanks for the support and concern.
Mo, I'm very worried about me, too. I see my Lyme doctor on Thursday and since he is my best shot at someone to do something (I know he's going to be very concerned), I'm going to ask about IV nutrition. He already has me on daily IV hydration with some vitamins and minerals and I'm not sure how easy it would be to add some nutritional things to it to make it partial parenteral nutrition (PPN) versus total parenteral nutrition (TPN). I will talk to him and see if that's something he'd be willing and able to do.
I saw my homeopathic nurse practitioner today and she was very concerned, gave me a remedy to maybe help with the motility disorder (that's what we all believe it is and we don't believe I require more testing to determine that's what it is). My LLMD said he'd give me Reglan (a med for motility disorders) at my last visit but didn't at that time due to some other things but I believe he will this week when I see him so we're hoping that could help, although Reglan has a lot of possible side effects.
Thanks for the suggestions. I will think about what you've mentioned about holistic practitioners. I do have my homeopathic nurse practitioner and my LLMD is more holistic than some, but not a holistic MD per se. Thanks for the suggestions.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
lou, thanks for your thoughts but when I developed these problems I was actually on Lyme treatment and improving (I was on IV Primaxin and oral tinidazole). I had to stop the treatment because of the stomach problems and a crash in my immune system at the same time. The diagnosis I have at this time for these GI problems is a motility disorder, probably gastroparesis, although we can't be sure that it's my stomach and not my intestines that is mainly affected.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Another quick update. Yesterday I saw Lauren, my homeopathic nurse practitioner who I've been seeing since I was little (long before I got sick) and she really knows me. The visit was mainly to talk, see what she thought, and just finally be able to have someone who knows me see how I'm doing.
After seeing all these doctors who don't know me well at all and just brush me off, it was so nice and refreshing and comforting to see Lauren who has known me since I was little and it's so easy to talk to her. I don't have to worry about not being taken seriously or about not being believed, she just listens and knows me and of course is a medical professional, too, so she's able to offer medical advice and give me homeopathic remedies (I don't totally believe they work, but I don't mind trying them - they can't hurt).
When she came out to the waiting room to get me, the first words out of her mouth were, "Wow, you really are skinny!" or something to that effect. And as weird as it sounds, those words were comforting to me because I felt like finally I was there with someone who knows what I usually look like and knows that I'm so far from my norm that something serious is happening and something has to be done soon.
So we talked, I caught her up on this latest crash, what I'm able to eat, my symptoms, etc. She absolutely believes it's a motility disorder and she believes that it's been there for a long time (caused by nerve damage from the Lyme), was exacerbated by the antibiotics I've been on for so long (very possible since antibiotics are rough on the whole body), and the crash I've been in was the final straw.
She says it's time to fire Dr. B (my GI - which I agree with, he hasn't helped me and it's high time I showed him the door) and she gave me the name of another GI dr. down on Cape Cod. She told me I might want to try goat's milk since I can't handle cow's milk and she told me she wants me to try to get in more calories but she also understands that my stomach needs a break and can't handle much so she's kind of at a loss of a way to really fix this right now.
She gave me a remedy to hopefully help the motility and she wants me to get a prescription for Reglan (motility medication) from my LLMD on Thursday, if the remedy hasn't helped in a few weeks I'll go ahead and take the Reglan. She also doesn't think I need more testing done, just treatment to help the motility so I can hopefully start eating more.
So I'm back waiting, but just a short wait until Thursday when I see my LLMD. I'm going to try to get an appointment early this week with an NP who can possibly serve as my "in the mean time" PCP while I find someone permenant. Right now I need someone local who can hospitalize me if necessary (it's getting to the point where I think it's necessary and I'm ready for it).
I'll let you know how things go this week. I hope you're not getting tired of my updates! You can also see more daily updates (and also more detailed info on things) at My Lyme Journal.
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
As you say in your screen name, AAAARRG!!! Referring to your GI doctor, that is.
One wonders whether there would be anything left of you by the time he noticed there was something badly amiss.
I'm glad you're going to a different doc early next week who's not unwilling to show you to a hospital bed if needed. Gotta get some nutrition into you somehow or t'other! Maybe some concentrated attention to your problem -- without waiting months in between doctor visits -- would bring things into focus more quickly.
I'll be thinking good thoughts and jetting them your way. And sending a slightly-less-than-bone-crushing snuggle.
Keep us updated, please.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Oh Annie! You are too young to be dealing with all of this! If I were there, I would give you a gentle hug. And then show all of these docs what lyme rage looks like. I was so hoping that things were improving for you.
Thanks for keeping us updated. I truly hope that this week you will get the help that you need!
Karen
Posts: 1688 | From Maine | Registered: Jun 2004
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Annie, Annie, Annie,
Wish I could give you a big hug!
OK, here is something I want you to think about and ask for, if you haven't already. (If you have, please forgive my not remembering).
Ask someone to do the IgG Elisa Complete Food Panel for delayed allergic reactions to foods. It is a simple blood test. If you need to know where you can get this done (i.e. in which Dr's office in MA), send me a PM, ok?
I don't know if an allergist would do this -- I hear they only do skin tests and RAST blood tests. This was a test that a wholistic Dr. did for me.
I have been having all sorts of gut problems and it turned out I was allergic to a whole long list of foods... they do become toxic to your body and can cause the abdominal and stomach pain, motility problems, nausea, loss of appetite, all sorts of things....
I would so like to see you with a wholistic Dr. at this point -- to rule out delayed food allergies, candida, and Leaky Gut. Long term abx leave us open to these things.
I dropped 18 lbs (not that I couldn't use that ha ha) and I know the eating problem.
If the GI series is normal then it is time to get answers from a practitioner who wears different hats and can see different angles. And not only homeopathy.
You PM me if you want a good name in MA, ok? Also, PLEASE get allergy IgG testing for *delayed* reaction to foods. It could be dairy, or gluten, or both.... for me it was a long list (dairy AND gluten) and I had NO IDEA except for similar sounding abdominal/stomach issues I was having.
I know a little bit about how hard this is.... keep your faith and hope and courage... I'll send a prayer for the angels to visit you.
Thinking of you. (((hugs)))
Posts: 1066 | From East Coast | Registered: Dec 2000
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I know you said reglean has alot of side effects.... and like most meds there are alot of possible side effects with it....
but the only one I have experienced is it makes me pee more frequently.
Also I take a med called zelnorm which is used for chronic constipation because it makes the intenstines spasm and move things along....
I know you said you think the motiity problems may not be just in your stomach so if things don't improve with the reglean you may want to ask your dr. about zelnorm.
arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
Okay, I have a few things to update you all on.
I had an appointment yesterday with my LLMD. He was very concerned with the amount of weight I've lost (10 lbs. since my visit 6 weeks ago and I had lost 10 lbs. between that visit and the one before it) and the little amount I'm able to eat.
But he didn't feel there was really much he could do for me right now mainly because my GI has been trying to get in touch with the motility specialist in Boston and get me in to see him.
So, my LLMD didn't want to prescribe anything, hoping that I can get in with the motility specialist. BUT, if I wouldn't be able to get in with the specialist within the next few weeks, he would do something for me and push to get me in with a pediatric GI dr. he works with sometimes in Boston and is pretty sure would take me even though I'm not under 18.
So the visit wasn't productive really but he did say that if things continue to go downhill, IV nutrition is an option (I'm not sure if he was really considering it or just thinking outloud).
So, then yesterday evening I got a call from my GI dr. He just left a message on my cell phone because I didn't recognize the number and I was at my aunt and uncle's house for dinner (a stop over after my LLMD appts.). The message was to call him back today (which I did and didn't hear back - grr!).
But when I got home there was a message my mom had taken (this is the second time my GI has talked to her about me even though he doesn't have my permission - I need to address this when I talk to him). The message was that the wait is a few MONTHS to get in to see the specialist and he wants to talk to me about the conversation he had with the specialist.
So I'm waiting to talk to my GI on Monday, I guess, and hope that maybe he'll be able to look into the clinic at Children's Hospital to at least know we've looked into all avenues for now before I officially fire this GI and go with the one my LLMD knows.
Today I went for an appointment with the NP at the walk-in clinic I go to sometimes mainly to see if she'd be willing to be my temporary PCP until I find a permenant one. We had a long visit, she is EXTREMELY concerned about me.
I won't go through all the details of the visit but we have some differences of opinion on a lot of things (including Lyme - she doesn't believe in chronic Lyme and doesn't agree with probably 90% of the treatment I've done in the last few years, thinks it's done more harm than Lyme ever would - she obviously hasn't ever had chronic Lyme) but she did give me a prescription for Reglan (for GI motility) and one for Bentyl (for colon spasms).
I'm so glad to finally have the Reglan so I can see if it will help. She said she feels like she should put me in the hospital but agrees with me that putting me in the hospital around here wouldn't do me much good at all - I need to go inpatient in Boston to make any headway (keep in mind that this is NOT for Lyme stuff, but GI stuff, so going to Boston is not as bad as it would be for Lyme).
She also mentioned (perhaps it was meant to scare me - but it didn't work) a g-tube as a possibility. I tried to figure out a way to say that I'd be RELIEVED to have one if I could tolerate it, hopefully just for the short-term until I can get things sorted out and manage to work up to eating a little more myself.
She also said she wants me to have psychiatric testing done which I will do to prove to everyone that it's not a psychiatric problem. I will also call my neurologist and stop the Topamax I'm on to see (and prove) that that's not what's causing all these problems. I just know in my gut it's not the Topamax but other people don't seem so convinced.
So that's my update. Does anyone know of a way to be honest about things and express what a relief it would be to get a difficult treatment/procedure (i.e. feeding tube) while not sounding like you really WANT it? I feel like I walk this fine line a lot and I worry so much that doctors will think I want all these horrible things (like Munchausan's or something).
Sorry that's so long. I guess a lot has happened this week! I will try to keep you updated as I hear from my GI and get in touch with my neurologist and LLMD.
posted
Annie, I did read something in there about the dr. leaving ANY messages about you with her.
I disagree on that since you are apparently living at home. You missed his call earlier & you want results.
Well, by his calling & speaking to a PERSON/ you Mom, he was able to give a brief message and reassurance to you about when you could get in to see another dr. but that he WANTS TO TALK TO YOU PERSONALLY.
Your knowing that much will save you a great deal of stress of waiting for phone calls that don't come.
Due to my neuro lyme, I wasn't able to read the rest of your post; sorry, but good luck.
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Well, I don't want to split hairs here (the tick did that when it bit me on my head!!) --but there are medical privacy laws in force now that require confidentiality if the patient has not given written permission for info to be shared with a specific source.
Is that Federal Law or varies by state? Here in New England a great deal is being made of the new HIPPA laws.
My doctors never tell my family members anything about my care -- I believe they are actually required not to by law unless I sign a release form for them to discuss something with a parent/ family member.
So, under these new laws, this Dr. is way out of line and actually violating a privacy law. Valid grounds for complaint.
If one were a child it would be different; but once one comes of age as an adult, the privacy laws kick in.
The new discussion out here is that if you have elderly parents who are in the hospital, a Dr. might not even discuss their care with you, their grown children, due to these privacy laws. People with aging parents are urged to get releases signed so that parents' health care can be discussed with the grown children.
I'm kind of glad they are taken so seriously. I was successfully able to seal the records after a hideously bad app't with a real "duck" who saw Lyme as fibromyalgia. It's times like that I am SO grateful for this privacy law!!
Warmest good wishes to you all! Posts: 1066 | From East Coast | Registered: Dec 2000
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
Annie,
I did a search on "motility" to see what it was, and a center where they address this specific issue popped up in one of the links.
I'd have to go back to check but I think it had Sinai in it. Is there a hospital with Sinai in it? Possibly in NY? Seriously, it's worth doing this search -- if you haven't aready!! -- because this center looked very committed to helping folks who had motility issues. Like, a whole *center* devoted to just that issue, and research about it.
Could you be seen at a place like that?
I have to crash and can't look it up until tomorrow, but it might be worth investigating a center that specializes in this. (?)
Sending you healing and hopeful energy. You are a bright star on the Board and we want you feeling better! Posts: 1066 | From East Coast | Registered: Dec 2000
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Betty, I tried splitting up my latest update the most I could, but it's now down to only one sentence per paragraph so I really can't split it up any further. I hope you can read it the way it is now.
Also, it's a fine line between "leaving a message" and "talking about my case". The thing is that he was given my cell phone number, called and left a short message on there, and then called my mom back and left a more detailed message with her when he could have done that on my cell phone. I just need to talk to him about this.
Henson, thanks for going into all the HIPAA law info. I need to talk to my GI about all this and really be firm with him about the fact that he does not have my permission and is therefore not allowed to speak with anyone but me about my care. Period. (I also need to get their office to put my cell number as my main number, but that's another battle.)
About the motility clinic, there are actually three of them in Boston and my GI was trying to get me in to see a doctor in one of them at Beth Israel Hospital (Beth Israel Motility Clinic). There is also one at Mass General and Children's Hospital.
So there ARE these places right in Boston and I am going to have my GI dr. look into the one at Children's next and then maybe the one at Mass General to make sure we leave no stone unturned. Thanks for doing the search, though!
Here are a few links with info on motility disorders:
Check your e-mail. I sent you a note regarding the Lyme seminar in VA.
Debbie/RI
Posts: 162 | From RI | Registered: Aug 2003
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
Hi Everyone,
Okay, another update after my appointment with my GI doctor today.
The appointment went well and after not being sure whether I'd be staying with him or firing him, I'm glad I at least decided to stay with him through this appointment as I think he WILL be able to help me and really DOES WANT to help me.
We briefly discussed the phone conversation he had with the motility dr. in Boston at Beth Israel - apparently that dr. wasn't sure what he'd be able to do for me but would be willing to do more motility tests and whatever else he could do. BUT, the wait is a few months to see him which was discouraging.
He (the motility specialist) also suggested trying Zelnorm but I suspect that's because my GI dr. is still so hung up on me being constipated, which I'm not so much anymore.
So after that discussion, my GI said he wasn't sure what else he could do for me and mentioned TPN but said the risk of infection from putting a line in isn't something he'd really want to jump to.
But when I pointed out that I do already have a port-a-cath that is accessed all the time and that right now I feel I need something to help get me to a specialist appointment, he said TPN would be fine at least for the short term.
So I'll be talking to his nurse tomorrow (the nurse who sets up the TPN wasn't there today) and getting that all set up soon. He wants me to run it for twelve hours overnight. And then I'll be running my saline for 8 hours during the day so I'll be hooked up to things for most of the day and night!
He also is having me double the dose of Reglan (motility med.) three times a day. He'll have me give that another few weeks and then if it's not helping he'll have me try Zelnorm.
And I talked to him about the motility clinic at Children's Hospital Boston and he apparently knows one of the doctors there much better than the one at Beth Israel that he talked to before, so if I have trouble getting in to Children's, he'd have more swing there to get me in sooner (I sure wish HE'D thought of that sooner).
So, that's the gist of my appointment today. I go back to see him in about six weeks (supposed to be a month but it's always hard to get in to see him).
I really do feel good about things and I'm optimistic that things will improve from here on out and I'll get some much needed energy from the TPN and stop losing weight (I'm down 25 lbs. since this started, and 30 lbs. below what I weighed in the fall).
Thanks for your continued support! I'm sure I'll keep you updated on how the TPN and Reglan are going as things progress with that.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
annie,
I am constantly amazed at your strength in the face of adversity!
I have a few questions:
Were you ever really diagnosed with a motility disorder? (I am not saying htat a doc's diag is the key to anything here)
Have you had the terrible barium enema test done?
reasons I ask: I had (and still continue to have occassionally) very very bad motility issues. Or that is what we thought they were. After years and years of constipation and hemoroids and emarrassment and harrassment I found out thru a barium enema that my colon was kinked.
That was just the beginning. A year after THAT I found out that I had endometriosis and the adhesions that it causes had kinked and wrapped around my colon and pulled it out of place and strangulated it in some places.
And I had one PCP tell me this ENTIRE time that I just needed more fiber.
I tried zelmorm and bentyl and the other drug--for motility and they worked for like a week and then they didnt work.
I did not have ANY mentrual problems, or anything FEMALE with my endo---it was all about pooping and gas and distention and bloating for me.
I thought I would put that out there. There is a currently being researched link between Lyme and endo. The only "test" to rule out endo is pelvic surgery unfortunately.
If you need more info PM me.
Take good are of yourself as you always do! Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
quote:Originally posted by trails: I have a few questions:
Hi Trails - I'll try to answer your questions.
Were you ever really diagnosed with a motility disorder? (I am not saying htat a doc's diag is the key to anything here)
No, I haven't officially been diagnosed with a motility disorder yet, that's why I need to get up to Boston to be able to have the more specialized testing done to show whether or not I have a motility disorder.
The testing that can be done at smaller (local) hospitals isn't always accurate (i.e. the gastric emptying scan of the stomach to show if there's a motility disorder of the stomach) and there isn't a way of testing for motility disorders of the intestines except with more specialized testing.
Have you had the terrible barium enema test done?
No, thankfully I've never had that done. But it sounds like it was a key thing for you in figuring out what was wrong. I will keep that in mind.
Thanks for giving me the info, though, and I will definitely file it away there in the information that may come in handy in the near future.
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