...because my gastritis/possible stomach ulcer has gotten pretty severe, but I can't sit up (severe orthostatic intolerance), and I don't know if I can mentally take the verbal beating a 'normal' doctor will give me for taking long-term antibiotics for a disease they don't believe in.
And with these severe stomach and gut issues I have, I know the condemnation is coming. My stomach hurts so bad, and the area around my appendix burns so bad. There is something wrong that needs fixed bad.
I know the appendix area is an infection. Antibiotics help it. I'm worried the bowel may perforate though, because the inflammation is so bad at this point. It's been growing for a year now. The stomach/gastritis... I don't know. Might be H. Pylori, but who knows.
Anyway, I'm a wreck, my Lyme doc can't help these new problems, and the doctors that can help will probably say I caused it by taking all the meds that have probably kept me alive in the first place (but I don't think the meds did it).
Sorry to rant, but I'm in a very tough spot here, both physically and emotionally. Not sure what to do... If my stomach would heal, I could deal with horrible Lyme. My stomach has me stressed bad though.
Posted by Lymetoo (Member # 743) on :
I'm so sorry to hear this, Sam! I know the meds really took a toll on my stomach.
Sounds like you will need to see a doctor about it. I know your apprehension!!
Prayers and hugs for you!
Will anyone possibly prescribe IV for you?
---Moving to Medical Questions---
Posted by SickSam (Member # 45330) on :
Thanks Lymetoo. Goodness I want to post some good news on here so bad!
Dr. C had me on Bicillin, but it wasn't hitting some symptoms that oral cefzil is. He had me on IV ceftazidime but the herx was enormous and unbearable. I'm really loving my oral meds right now but I may have to do something different. ):
Posted by TF (Member # 14183) on :
SickSam, I really think that if you went to a gastro, he would likely not chastise you about your lyme treatment but rather want to do tests to see what is going on in your stomach.
Perhaps it IS H. pylori. I would think that getting a look in the stomach (endoscopy) would be in order based on the severity of your symptoms.
H. pylori really needs treated because it can eventually turn into cancer after many, many years.
Let's hope it is something simple like H. pylori treatment.
I have a great gastro. His personality is such that I never worry about him chastising me for anything. I hope you can find someone similar--someone with a very nice personality.
That's the kind of doc nobody minds seeing any time!
Posted by sammy (Member # 13952) on :
Please, don't let fear get in the way of emergent medical care.
Any true university hospital will be used to seeing ALL kinds of people with ALL kinds of diseases.
All you need to do is show up in the ER and clearly define your symptoms with severity.
Don't don't don't say anything about why you think you have these symptoms!!! That's not you're job, that's the doctors job!!!
No one likes to go to the hospital. But you know that there are times when your health & life is on the line.
Please my friend, just go. Get some tests, diagnosis, and treatment.
Waiting isn't helping anyone.
Posted by bluelyme (Member # 47170) on :
Sorry to hear this sam ..h.pylori caused a bad hiatal hernia for me .was right in the core of me radiated to my back ...if gi ducs prove lame i have a great guy who does testing for all kinds of critters..
Posted by Lymetoo (Member # 743) on :
Sam .. How are you doing?
Posted by Rumigirl (Member # 15091) on :
I agree with sammy, TF, blue, etc. You should go to the ER and go from there in getting it checked out.
I would also ask your closest Lyme Support Group for a referral to a Lyme friendly GI doctor---or just a good GI doc. But that would take time to get a referral, get an appt, get tested, etc. You can't wait that long right now.
It does sound like a hiatal hernia is possible. Around the appendix, it might be an ileo-secal valve problem (stuck open or closed). A good chiropractor can help with both (I had both a long time ago).
However, now is not a time for a chiropractor or for waiting. First go to the ER, get whatever work-up you can get either there and with a GI doctor afterwards and go from there.
But in spite of what I said, sammy is right: don't tell the doctors what you think it might be.
Let us know how it goes.
Posted by SickSam (Member # 45330) on :
Thanks for the thoughts everyone. I know all of you are right about this. If I could drive myself to the ER it would be so much simpler.
The right lower quadrant inflammation seems to have improved some, but the problems in my actual stomach are worse today. This gastritis/possible ulcer is unbelievable.
Do any of you have experience with gastritis? I'm just not sure the gastritis part of this is an emergency. I *am* concerned about it, but I was more concerned about the right lower quadrant inflammation. I could call and talk with a doctor-on-call and ask his opinion, but I'd love to hear any experiences you all may have as well.
I've been talking with a man who cured his Crohn's disease with rife, and he has given me some excellent guidance on which pathogens to rife for colon inflammation. I started today, so I'm hoping the reduced inflammation around my appendix is due to the rifing. I really believe it is. I'm going to increase my run times on it tomorrow.
Posted by TF (Member # 14183) on :
The only thing that comes to mind is the following quote from Burrascano regarding bartonella:
"Other key symptoms may include gastritis, lower abdominal pain (mesenteric adenitis),...." (p. 24)
Before I was diagnosed, I got episodes of unbelievable lower abdominal pain. The longest episode was 10 days. I just laid at home on narcotic pain meds. Eventually, I went to the gyn who ordered a sonogram. Nothing. On the 10th day I went to the ER. They were sure it was appendicitis. They did a full body scan which turned up nothing, so they sent me home with the offer of pain pills.
It resolved that night all on its own.
When I had these episodes, I would drag myself to the gyn to get a sonogram of my uterus and everything else that could be tested. I had a few colonoscopies within a short period of time that showed nothing.
Interestingly enough, once I was diagnosed with lyme, babs, and bart, and treated lyme and bart, I never had the terrible abdominal pains again.
So, I have concluded, looking back, that this was bartonella doing its dirty work.
"What Is Mesenteric Adenitis?
1. Mesenteric adenitis can cause pain in the lower right part of the abdomen. It may be mistaken for appendicitis.
It causes inflammation and swelling in the lymph nodes inside the abdomen.
Mesenteric adenitis affects lymph nodes in tissue called mesentery. This tissue connects the intestines to the abdominal wall. Another name for mesenteric adenitis is mesenteric lymphadenitis.
Symptoms of mesenteric adenitis can include: •pain in the lower right part of the abdomen, or in other parts of the belly •fever •nausea and vomiting •diarrhea •general sick feeling, called malaise •weight loss
Mesenteric adenitis has similar symptoms to appendicitis. The main difference is that mesenteric adenitis is less serious than appendicitis. It usually gets better on its own."
This site lists bartonella as one of the infections that cause this condition.
Read the entire page because it includes a lot of good info about when to go to a doctor, how to treat yourself at home, etc.
"When to see a doctor:
Symptoms of mesenteric adenitis include: •belly pain that comes on suddenly and is severe •belly pain that happens with fever, diarrhea, vomiting, or weight loss •symptoms that don’t improve, or get worse"
Posted by SickSam (Member # 45330) on :
TF, that actually helps a lot. I didn't realize Bart could cause gastritis! But it makes total sense.
Early on last year, the first time I ever tried Levaquin (I took it with Bactrim), my acid reflux went away. Within two days of stopping the combo, my acid reflux returned in enormous proportions.
Also before that, I had an upper gi scope that revealed mild non-erosive gastritis. The only symptom I had at the time was reflux, no pain. They did a biopsy which revealed no H. Pylori infection. I bet it's been bart this whole time.
Except that I've been taking Factive, and it's been getting worse... That peice of the puzzle doesn't really make snese.
On the pain near my appendix, I do think it's my bowels. I can push on the pain and it gurgles. It's also greatly affected by the food I eat. Who knows though, maybe I do have some mesenteric adenitis there too, that's a really good thought!
Posted by TF (Member # 14183) on :
I went to so many doctors and had so many tests for abdominal pain that I can't count. This was all before my diagnosis of lyme, babs, bart.
Now that you tell me the tests you have already done (upper GI scope. etc.), my bet is that this is all bart and even though you are as sick as a dog, nobody will find anything--just like what I went through for so long.
Do bart treatment with some other good bart med and see what happens.
I got rid of bart with 30 days of Levaquin. That and Factive are quinolones, but I have never seen any lyme doc's writings say that Factive treats bart.
If you are going to do a quinolone, it may as well be the best one for bart--Levaquin.
Please see this piece of advice from a lyme doc of how to avoid problems with Levaquin:
Bactrim also hits bart, so that may explain why that combo was so effective for you where Factive alone isn't.
Posted by MannaMe (Member # 33330) on :
you can also rife for bart.
Posted by SickSam (Member # 45330) on :
TF, I've actually taken Levaquin long-term as well. I switched to Factive because Ive read several LLMDs saying it was stronger than Levaquin against Bart. Plus, it's quite active against borrelia too, whereas Levaquin isn't. I'm taking Bactrim with Factive too.
I've also had an enormous amount of testing, but I've actually had some of it come back abnormal.
PET scan showed two hypermetabolic foci in my right kidney, echocardiograms have shown diastolic dysfunction, tilt table shows POTS, CT scan shows something near my sigmoid colon, functional capacity test show shows severely limited, nerve conduction study shows left ulnar neuropathy.
Come to think of it, I've had quite a few abnormal tests, but tons of normal tests too. I'm pretty sure if I had another upper gi scope right now, it would show moderate to severe erosive gastritis. My thoughts are why do another test, though? Might as well just treat the cause.
MannaMe, I definitely rife for Bart too. I'm still missing something with my rifing though. I either need longer runtimes or to target more infections.