oops! Lymetutu
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
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oops!
Lymetutu
-- Lymebegone
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
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.
I am hoping that your wife will be better soon.
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.
I would do the exploratory. Better to find out what is going on. Anything is better than a surprise.
Just because there are no stones and the ultrasound looks fine does not tell the whole story. You can have gall bladder disease.
Sorry to hear she is having so many problems.
Have they checked for that, or considered?
Tell her she's in our prayers and we hope she is feeling much better very soon!
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oops!
Lymetutu
I've had severe abdominal pain 25+ years. Had my gallbladder out in 79 and sicker than a dog for 10 days in hospital.
Have a hiatal hernia and acid reflux to add to things. Had ENDOSCOPY twice...they saw something "unknown" so it was repeated.
When I had to had surgery for a non-related matter, I asked them to check that unknown thing out. Guess what....FATTY tissue!
Meanwhile since they were in there removing the polyp on my colon, they removed my appendix.
I still have stomach pain. In fact, it hurts so much to have anything around my stomach waist band area at all...so I let it all hang out! uffda.
Anyway, best wishes on your wife/daughter getting better w/their lyme & co-infections. Betty G.
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.
Check out http://www.celiac.org http://www.celiac.net
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.