posted
Hello, this is my first post. I have been browsing this wonderful forum for a few months.
My daughter and my wife both have persistent Lyme. My wife was admitted to the hospital on Monday with severe upper abdominal pain and suspected intestinal blockage. She started seeing a good LLMD in June. She had been on IV clindamycin for three weeks and IV zithromax for one week (also daily Culturelle, NADH, CoQ-10, and alpha lipoic acid) before being admitted to the hospital. She has been miserable since starting the IV (increased pain and fatigue) which I have been attributing to a herx.
The hospital has performed a series of ultra-sound and contrast X-rays, but they have not found evidence for the suspected blockage. They are now considering exploratory surgery.
My concern is that the underlying cause of her abdominal pain is her Lyme infection, and that exploratory surgery will only exacerbate her condition.
She has been without nutrients, supplements, probiotics, and antibiotics since Monday morning.
Tomorrow is probably the critical day on which it is decided whether to do the surgery. I tried contacting the LLMD's office today, but have not yet received a reply. I would greatly appreciate the advice of anyone with similar experiences.
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
Has the possibility of gall bladder disease been considered? Rocephin is notorious for causing people to have to have theirs removed. I don't know whether other antbiotics can cause the same phenomenon. These days, a cholecystectomy (gal bladder removal) is usually don laparoscopically and is pretty easy to recover from. If they insist on doing the surgery, perhaps it could be done laparocopically, at least initially and unless something inoperable by that method is found. I wish both of you god health. David
Posts: 2034 | From CA | Registered: Jan 2003
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posted
After the first ultra-sound, they told us there were no gall stones; but I will ask them whether they have definitively ruled out the gall bladder as the cause. Thanks.
quote:Originally posted by Lymebegone: Hello, this is my first post. I have been browsing this wonderful forum for a few months.
My daughter and my wife both have persistent Lyme. My wife was admitted to the hospital on Monday with severe upper abdominal pain and suspected intestinal blockage. She started seeing a good LLMD in June. She had been on IV clindamycin for three weeks and IV zithromax for one week (also daily Culturelle, NADH, CoQ-10, and alpha lipoic acid) before being admitted to the hospital. She has been miserable since starting the IV (increased pain and fatigue) which I have been attributing to a herx.
The hospital has performed a series of ultra-sound and contrast X-rays, but they have not found evidence for the suspected blockage. They are now considering exploratory surgery.
My concern is that the underlying cause of her abdominal pain is her Lyme infection, and that exploratory surgery will only exacerbate her condition.
She has been without nutrients, supplements, probiotics, and antibiotics since Monday morning.
Tomorrow is probably the critical day on which it is decided whether to do the surgery. I tried contacting the LLMD's office today, but have not yet received a reply. I would greatly appreciate the advice of anyone with similar experiences.
-- Lymebegone
I had something similar 2 years ago after heart surgery, valve replacment, and heavy antibiotics. I was hospitalized, they found a mass, was told it probably was cancer, just 6 weeks after heart surgery. After three days of liquis diet and iv abx, they did a sigmoidostemy(sp) and guess what! Found nothing. Last year we were in Tucson, had bad abdominal pain, went into ER, had all kind of tests, nothing. Every time I go in to ER and they find NOTHING it is Lyme. I was in ER yesterday, after starting abx shots, 2.5 million ccs , bad abdominal pain, ANd nausea. After tests and morphine iv, they found nothing. I think I had a BIG kill off of stomach Lyme. it cleared up after morphine wore off, and then has feeling of constipation. Today, diareaah. exit dead Lyme. Now when I go into ER I tell theem U have LYme and if they find nothing, it IS Lyme. I used magnets on stomach for 6 months after first experience and they helped more than anything. My advice, get ahold of LLMD first. Good luck, Jane
Posts: 17 | From out west & up north | Registered: Mar 2004
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Our PCP has a consultation with our LLMD on Friday morning, and they did NOT do exploratory surgery.
This morning, they did a gall bladder function test to supplement the ultra-sound. There is no evidence of a gall bladder problem. Our PCP says he is stumped, but is willing to accept the probability that this is caused by the Lyme infection (also, apparently, HGE - 1:160 on the IGG; this may explain my wife's menopause symptoms, as her blood tests show she is not menopausal).
So, they should be releasing her from the hospital soon, and we will deal with her condition (LLMD is scaling back the IV to twice per week instead of 5x per week).
I can't help thinking about the poor people who don't know they have Lyme, and go through unnecessary and possibly harmful diagnostic procedures when their symptoms send them to a doctor or the ER.
Thank you to those who replied to my post. It was quite helpful.
posted
I'm glad they did the scan to check gallbladder function to rule out gallbladder problems...I have just this week had the ultrasound (had stones) but also had the scan and my gallbladder wasn't functioning...had surgery yesterday and am doing well.
posted
I've had severe abdominal pain from the following:
gallstones elevated liver enzymes heavy metal detox secondary infection acid reflux made worse by Lyme
Though I am NOT a doctor and you should not take anything I say as a reason to put off potentially lifesaving surgery, I have found doctors are overjoyed to recommend surgery, and not as enthusiastic about other options. Every medical problem on the above list was solved by "other" means:
Probiotics Actigall Lactoferrin Chlorella (which, along with extra doses of the Vitamin B's, you MUST take with alpha lipoic acid--get the broken cell wall variety from a high quality company) Craniosacral therapy Liver-enzyme-lowering herbs
As you have probably seen from reading Lymenet, there approximately one million other supplements and treatments besides these that are available for you to choose from--these are just what I stumbled across.
Alpha lipoic acid, like NAC, is a powerful heavy metal detoxifier--it will stir up the metals, such as mercury and lead, but can redeposit them elsewhere in your body unless you bind them with chlorella or a stronger agent like prescription DMSA.
Also, it will pull a lot of necessary metals, like zinc and calcium, out of your body, and you have to replace them quickly or risk getting very sick.
There's tons of information on this subject for you to check out, both on this site and on google.
She was released from the hospital on August 8. That same day, she nearly collapsed in the bathroom because she was so weak. I caught her by supporting her arms. Now it appears that the combination of her PICC line, her swollen arm, and the trauma of the near collapse caused a venous thrombosis (blood clot in the vein that contains the PICC line). She is taking a blood thinner (warfarin) for the clot, which has resulted in her having abnormally thin blood (at the same time she has a blood clot!).
Until the clot shrinks, they do not want to pull the PICC line because they do not want to dislodge the clot and cause an embolism.
To make matters worse, she suffered another incident of severe abdominal pain and vomiting, which put her back in the hospital from Aug 23-27. Her LLMD is convinced that this is all Lyme-related, though he also says he has never seen a case like hers. He wants to do an endoscopy and biopsy to look for the bacteria, but this cannot be done until her thin blood problem is resolved.
In the meantime, she is off all abx and supplements, so her Lyme treatment is on hold while we wait for the physical problems caused by the initiation of her treatment to resolve. Obviously, we have a long road ahead of us.
posted
Hello. I just thought I'd add my experience in this area. I have not had all that your wife has, but definately have had the abdominal pain. They took out my gall bladder, but it never made any difference. I decided against exploratory surgery after a lot of research. They rarely find the problem, and it's another surgery to heal from and more scar tissue build up. In my experience, it can all be just a part of Lyme. I've never had it resolved, but I've just started Lyme treatment 2 months ago after five years of being sick. Good luck to you both! Take care, Beth
Posts: 72 | From California | Registered: Mar 2004
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posted
Lymebegone.....so sorry to hear that your wife is having so many problems. It all sounds like Lyme, sad to say. I hope the clot dissolves soon, so she can get off the coumadin. Ugh!
Tell her she's in our prayers and we hope she is feeling much better very soon!
posted
I have no gall bladder. I also had my right side with severe pain , thus went to doctor . He did an MRI found nothing. Was not sure what caused it. Might have been acid reflux related. I have a hiatal hernia. I also hope you find out what is wrong. Have slight side pains once in awhile , but stress had a lot to do with my problem too, I guess. Posts: 560 | From PA | Registered: Apr 2001
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breathwork
Frequent Contributor (1K+ posts)
Member # 567
posted
I've lost my gall bladder to lyme and the drugs...bye bye..glad to have it gone.
I still get the abdominal pains...
My mom was diagnosed with celiac disease a year ago and insisted that I be tested...
Guess what...I have it.
It's an autoimmune disease that 1 in 133 people have the genetic tendency for. It can be triggered by stress, infection or trauma. It causes the immune system to destroy the lining of the small intestine over time. The symptoms can be varied, but the disease as it progresess involves every organ system.
The small intestine is where we absorb nutrients and most meds, so having it slowly destroyed leads to all sorts of medical presentations.
Most US docs are not up on it, but it's very common in the EU...
The treatment is a gluten free diet. It's that simple, and my gastric pains, runs, bloating, blood in the stool, etc are gone.
See if any of this rings a bell and ask your doctor to do the simple blood tests that can indicate the presence of celiac disease. The gold standard for diagnosis is a biopsy done via endoscopy, so having it added to what you are already planning is a piece of cake.
My symptoms were progressive and paralleled my lyme symptoms...However, undiagnosed celiac can lead to severe gastric bleeding, cardiac abnormalities, osteoporosis, etc....It can be inoccuous in the early stages, but wicked later on.
I hope this is helpful. Celiac is infinitely treatable. We just need to get US docs to test for it. The NIH held a symposium requesting information concerning Celiac Disease in July, so the ball is rolling, just slowly. (and thank God it's not controversial as our lyme is!).
It would be an easy answer to your wife's complaints, so worth testing for.
posted
I ended up in the ER one night feeling like I'd been kicked by a horse in the upper abdomen. Severe pain, just under ribcage. They gave me a megadose of Tagamet intravenously. Still get "attacks" of something...burning in the esophagus, gnawing pain, even occasional vomiting. I've been on oral Tagamet, Zantac, and now Prilosec (also developed gastric reflux post Lyme). My GI studies never showed an ulcer. Go figure.
Posts: 459 | From Connecticut - just across the river from the Lymes (Old Lyme, Hadlyme, East Lyme, South Lyme & Lyme) | Registered: Oct 2000
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