Topic: Gallbladder Tissue Sample Test--Igenex vs Clongen?
Rumigirl
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I just had to have my gallbladder out, due to being wrecked by Lyme and rocephin. I was about to send in a tissue sample to Igenex for testing. They only test for Borrelia. Then, I saw that Clongen tests tissue samples for EVERYTHING!!
So, I assume that that would be superior, as the Lyme MD blogger just blogged about a patient who's gallbladder was shown to have lots of Mycoplasma in it through a Clongen test. Does anyone here have experience with either or both labs for tissue samples?? What is your experience of either lab for tissue samples? Bea, did you ever do a tissue sample test for your hubby through Clongen?
The hospital pathology lab tested a tissue sample for Bb and anything else and found nothing, but, of course, they don't specialize in Tick-Borne Disease testing.
My current "LLMD," who it turns out isn't very LL, thinks I have "Post-Lyme Autoimmune Disease," despite many positive Igenex and MDL tests for Lyme, Ehrlichia ("false positives," he says!!), and Mycoplasma, and despite completely inadequate treatment for these, plus clinically diagnosed Babs and Bart. Time for another LLMD. I have to keep seeing this "LL" neuro, however, for IVIG rx. Sigh.
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sammy
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Hi Rumigirl!
From what you have described, it sounds like Clongen lab might be able to test the tissue sample more thoroughly for any possible infection. Where Igenex will only test for Lyme? I'm curious, I would go for the Clongen test and see what they might come up with.
Now, most important question, how are you feeling? Has someone been helping you while you recover and are you doing OK?
Hugs, I hope you heal quickly and feel much better Posts: 5237 | From here | Registered: Nov 2007
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Rumigirl
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Hi sammy,
I made the major mistake of thinking I'd be in better shape than I was when I came to in the recovery room (when my husband was at work). I discovered that I should have had someone there to advocate for me, as I needed more pain and nausea meds, but didn't get the nurses' or anesthesiologist's attention until after the anesthesiologist was gone--then I was left with only oral meds---ugh!
Then, after my husband brought me home, I thought I'd be ok on my own---wrong! I couldn't get up or down from the couch by myself, let alone the bed! So much for the typical WASP thinking I could do it all myself!
Anyway, I'm slowly getting better. I have wondered if I made a mistake, as I've had digestive trouble now, but that is slowly getting better. Too late now, anyway.
But right after surgery I had to deal---all by myself--- with Oxford cutting off the authorization of IVIG that they had already given with no notice---which also cut off nursing care for my port!! I have finally gotten authorization again, although they are still playing games with the authorization, which only got reinstated because I filed a complaint through the state AG's office. It never ends . . .
Thank you for asking. After I recover a little more, I hope to go back to tx, but I will have to get a new dr for that clearly.
I have to see if Clongen can legally accept tissue samples from my state, as Igenex can't. Otherwise, I have to go through gyrations to give an address from out of state (a friend's address) in order to get the test. My state is insane with not authorizing specialty labs to do tests from this state---all of them, Igenex, Advanced Laboratories (the new Bb culture test), Hair Analysis labs, etc., etc.
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Rumigirl
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up for feedback---Bea or anyone?
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I am having my gallbladder out this Friday and wondering what you ended up doing? I am leaning towards Clongen, but not sure what all to test, any thoughts?
How long did it take for you to recover from the surgery and how long until you could manage fairly well by yourself? I have a 9,6 and 2 year old at home and worry about how long I will need extra help. How are your digestion issues?
Posts: 76 | From IL | Registered: Oct 2010
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Rumigirl
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I wanted to do a test with Clongen, but my dr wouldn't rx it!! He rx'd a test through MDL. Will get the results on Tuesday.
Everyone is different in terms of pain, etc. afterwards. But I was in more pain afterwards than I anticipated, partly from the surgery, and partly from the gas they introduce into the abdominal cavity for the surgery. That was brutal!!
Please do line up help, and even more so since you have little ones! I was shocked the first day, I couldn't get up or down from the bed or the couch by myself, due to pain! And this was on pain meds.
Make sure that you have adequate pain meds, such as Percocet. Otherwise, it would be torture. It took close to 2 weeks to be out of most of the pain, although the worst was the first few days to a week.
My digestion is still wonky, although better than it was. I was afraid of that. Good luck.
Oh, and I strongly recommend having someone there in the recovery room, if possible. I needed more pain and nausea meds, but was too out of it to get the nurses' attention before the anesthesiologist left!! Not good. They were chatting away at the nurses' station.
Then, after my husband brought me home, I thought I'd be ok on my own, so he could go back to work. Well, wrong. Couldn't get up or down from bed or couch---yikes! So much for being so self-sufficient. Being a good WASP (read stoic, self-sufficient) doesn't always work so well. I was amazed at all the patients who were there with their extended families! Not a WASP trait--ha!
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Rumigirl, thank you for your honesty. It has been 2 weeks now and it was AWFUL!!! My outpatient procedure ended up being a 4 day hospital stay because I had blockage in my duct and had to go back under for a ERCP to get out the sludge and stones that were lodged. They also inserted 2 stents so I have to go through a ERCP all over again in a couple of weeks. The gas they have to insert is miserable. I had a drainage tube for a week and a half too.
I am still not feeling good and it doesn't sound like I will really start healing completely until the stents are removed. I really regret my decision to send my gallbladder sample to Clongen now because I think it sat too long and it came up negative??? I had my gallbladder out on a Friday and it wasn't sent until Monday evening. Lots of $$$, I was disappointing it wasn't more telling.
Having lots of back pain and lower abdomen pain, not sure what that is from. Not a huge fan of IV rocephin right now Posts: 76 | From IL | Registered: Oct 2010
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Rumigirl
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Oh, sorry to hear all this! It really does sound like you had/are having a miserable time. Hopefully, it will get better from here.
2 ERCP's??!! Couldn't they do an MRCP instead? ERCP's have a high rate of creating pancreatitis, which is quite serious and requires a hospital stay.
My GI dr, who did my MRCP, is the head of GI intervention at a most prestigious hospital wouldn't consider doing an ERCP on me, for which I was grateful. Maybe it's unavoidable in your case? Check it out to make sure.
Yes, lots of people lose their gallbladders to rocephin, although Dr. B says that he thinks a lot of it is from Tick-Borne Diseases. He said he had lots of Lyme patients who lost their gallbladder, who didn't use rocephin.
Feel better! And make sure that they give you enough pain meds! Toughing it out is not good.
Oh, and my tests came out negative, too. My surgeon said that it is difficult for pathogens to survive in the gallbladder. That wasn't Dr. B's opinion, although he doesn't cut out GI organs for a living! Can 't you get reimbursed for the tests?
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They sent me home with Vicodin and my liver enzymes went pretty high in a short period of time so I went off it. It didn't really help anyhow.
Yeah the ERCP's are not fun at all. I think I didn't have a choice because they had to go in and remove the sludge and stones that were lodged and have to go back through to remove the stents.
We should have listened to the hospital when they said it wasn't going to be good for testing anymore by then. We are sending the bill off to insurance so we will see if/what they will pay.
Thanks!
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