posted
I'm posting hoping someone will know about this situation. The last time I saw Dr. J in NC he said I needed a nuclear scan and an ultrasound of
my gallbladder. I have right front pain and a very distended abdomen. I have also been burping up a LOT of bile which is quite painful.
Dr. J wrote out his request on a prescription pad which I took to my primary care physician. It has taken this long to get from the pad to PCP to tests ordered and done.
The nuclear scan was clear according to my PCP's nurse who called me today, but the ultrasound showed a 3 to 4 cent. "cyst" on my liver.
Nurse said my PCP would recommend a gastrointerologist and schedule an appt. for a CT scan. I have been having the pain which isn't real bad, just tender and I had thought my abdomen
was just me gaining a lot of weight really quick. I do not drink alcohol. I have been a smoker. I have lately been much more fatigued and brain-fogged than in the last few years.
I have two positive WB tests for BB and a positive test for Mycoplasma Penetrans. I am not on any abx or other treatment for lyme yet.
I googled liver cysts and learned there are a few kinds, one being a TAPEWORM but that is unlikely since the kind of parasite is only found in very undeveloped countries.
The cyst can also be a tumor...will not know anything until I see new doctor and have a CT scan which should show something definitive.
There is one type that seems to be in connection to the gallbladder and since so many people here have had problems with their GB's, I thought maybe someone may have some
knowledge about the liver. I didn't even know until tonight that the liver is where the gallbladder deposits bile. (missed that class in high school I guess.)
Anyway, if anyone has any info, I'd appreciate hearing it.
And I would appreciate any prayers sent up for me because the last couple of days have been hard. My aunt died yesterday on her birthday. She had been ill for a while with a rare type of Parkinson's but her death still is difficult.
BTW, the nurse who called me seemed to be in tears. That REALLY made me nervous. I DO know that liver cancer is pretty much a death sentence but she didn't say tumor....she just said large "cyst."
I won't be online much for the next few days but will get on Lymenet to see if anyone responds.
Thanks so much all........you are the greatest.
Love and light, Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Hi Janet, First... don't panic, ok? Just schedule the CT scan and see what it says. It should give a much clearer picture and might show something completely different.
I've noticed in the past that my ultrasounds and CT scan don't necessarily match. Hmm... actually they mostly don't.
Do it as fast as you can, that leaves less time to worry and if it is a cyst or soemthing that needs removal. That way you'll know exactly what you're dealing with.
My last CT scan showed 2 of something they couldn't figure out in my liver but a biopsy a few months earlier said it looked pretty good.
boy, I'm sorry you're having to go through this and I hope it turns out to be something easy to take care of. Sorry, not much help but wanted to reply.
I have Hep C so do have my liver looked at a lot. But I have to tell you the gallbladder they rarely saw stones in for 23 years. Looked perfectly normal on tests turned out to be bad. It took until having it removed for them to see it.
Sending prayers your way, kiddo. Hang in there, k?
I'm very sorry about your Aunt.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Gosh, that's a lot on your mind, Janet. I'm so sorry. You'll be much better informed after a CT scan. Even though chances are good it's NOT a bad thing, I know how hard it is to keep your mind from going there.
Condolences on the loss of your aunt. Being "ready" rarely prepares us for that.
Hang in there and prod people to do the needed testing YESTERDAY so you can get to the bottom of this.
Sending you a hug.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Janet,
I don't know anything about the liver or GB, but wanted to send you hugs.
Having lost my mom at 95 last summer I know that no matter how "prepared" you are for a death, it's still not easy when it comes.
Take good care of you and let us know what you learn.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
janet, my heartfelt sympathies to you on the loss of your beloved aunt; i called aunt, soon to be 95 to be in april today; she drove over and visited 1 hr. yesterday. she's so dear to us.
i hope you received the pm of my sympathy poems. i'll have to change what is in treepatrol's as majority of them went to never-never land there; only 4-5 there out of 30+ i posted!.
liver cyst ... did you go to NIH's med library?
www.medlineplus.org and then type in what you are looking for; will bring up things galore you could read.
i agree; make the appt. NOW as it's the fear of the unknown that i/you/others can NOT STAND! you don't get in the next day anyway.
then you can spend time grieving this week for your dear auntie!
thanks for posting your results janet.
liver cancer; mom's colon cancer had spread to her liver before it was found 7 yrs. later; took that long for proper dx!
hers was called carcinoid syndrome tumor cancer. our hometown neighbor who sang at her funeral ended up with this same RARE cancer. 2 yrs. ago they took part of his liver; he's doing very well! that wasn't an option back in 1988 when mom's was found! so progress.
my sister's breast cancer was in the liver when she was re-diagnosed after being 6.5 yrs. cancer free too. so been there; done that too.
janet, here's praying to god that he will give you good news and it can be removed safely/promptly.
email any time you need to janet ok! i'm here for you as you've been here for me during some rough times lately with my health...
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Janet,
First of all sending you positive thoughts and prayers.
I think it is the not knowing that is so darn frightening.
My neighbor, who is an RN, recently was dx. with Lyme disease.
Her liver is covered with cysts!!!!! She has a couple on her spleen and a couple around her lungs as well. There is one on her liver between 5-7 mm!
She had a CT scan done, and they are just cysts. We think they are from the Lyme as none of the MD's know where this comes from.
She has her first LLMD appt. next week.
I wish I had more info to help, but I wanted you to know that I know someone who has cysts, had a CT and they are only cysts!
On another note, I had a doppler echocardiogram done which showed all kinds of bad things.
Followed this up with a nuclear stress test to be told that my heart was "perfect".
Scans are notorious for being a bad diagnostic tool!!
The nurse that called my neighbor also cried when they told her she had multiple cysts.
Hang in there. Don't lose faith. I was petrified about possible heart condition and the stress really set off my Lyme symptoms.
I am praying and believing to hear some good news re: liver cysts from you following CT.
So sorry about the loss of your Aunt.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
Hi there, I wanted to let you know that four years ago started my fun adventure with a liver cyst. It was on the small side (around 1-2 cm) and was discovered when I went to the ER with upper right quadrant abdominal pain.
Of course I thought it was cancer. Two CTs and one ultrasound later it appeared that it was not.
Mine disappeared after I stopped taking the Pill. It turns out that the Pill can cause liver cysts in some people.
Many people have liver cysts and don't even know it. If you took 100 people from the population and gave them a CT scan, most of them would have something show up.
Anyway, I have been where you are now. In fact, I am thinking about getting another ultrasound just to see if mine has returned because I read your post. But try to relax...there are many reasons for liver cysts.
Also, I think the liver deposits bile into the GB not the other way around which is why the GB is not a necessary organ. I think when the GB is gone the liver deposits the bile straight into the digestive system.
Keep us posted. Feel free to PM me!
Posts: 331 | From virginia | Registered: Nov 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
vachick said:
"Also, I think the liver deposits bile into the GB not the other way around which is why the GB is not a necessary organ. I think when the GB is gone the liver deposits the bile straight into the digestive system."
That is the way I understand it, too. Also, according to one researcher, gallstones fill the liver as well as the gallbladder. Is it possible this is being picked up? This is not a hard thing to resolve. Nor is clearing a tapeworm.
Whatever is wrong, one thing I know for sure is that the liver has strong capabilities for regeneration. I have a book I will try to find regarding liver health and hopefully post later.
Best wishes,
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
Wow! I am blessed to have so much support! Thanks to Trueblue, Michelle, Lymednva and MIZZ BETTY for your dear, kind words of encouragement and empathy. I feel better already!
And many thanks to Geneal, Vachick and Clairnotes for sharing your experiences....it has made me feel less frightened about what is going on inside this ole body of mine.
I am a bit embarrassed to learn that the liver deposits bile into the gallbladder and not the other way around. Silly me.....that's why I took astronomy instead of biology in college!
For whatever reason, that crappy bile is finding its way up into my throat an awful lot and my upper abdomen is swollen and very tender. I have a LOT of air hunger.
Didn't get referral yet from PCP. Today I called all the doctors I have appts. with the rest of this month and canceled them.....rescheduled for next month.
Too many doctors, not enough sunshine! I think after the liver thing is resolved, I will just quit being a patient for a while. As has been said here recently, I am a PERSON!
I hope I didn't leave anyone out to offer my greatest thanks for your posts. There is just no feeling quite as good as asking for help and having
so many take the time to share support and information. Geezooey guys......you're the best!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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bettyg
Unregistered
posted
" There is just no feeling quite as good as asking for help and having so many take the time to share support and information. Geezooey guys...... you're the best! "
janet, it takes one, the BEST, to know one!
yes, there is nothing like support and other people's experiences giving you direction and other things to look into when you see the docs.
here's praying each day is less of a burden on your shoulders going thru the tragic loss of your very dear beloved auntie! glad you like the poems i sent you. i'll have to get them ALL back up on lymenet since they were cut off after 4-5 at most out of 30-40!
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bettyg
Unregistered
posted
" There is just no feeling quite as good as asking for help and having so many take the time to share support and information. Geezooey guys...... you're the best! "
janet, it takes one, the BEST, to know one!
yes, there is nothing like support and other people's experiences giving you direction and other things to look into when you see the docs.
here's praying each day is less of a burden on your shoulders going thru the tragic loss of your very dear beloved auntie! glad you like the poems i sent you. i'll have to get them ALL back up on lymenet since they were cut off after 4-5 at most out of 30-40!
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I hope it is all okay. I really do!!!
Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Hi Janet,
I mentioned a book for liver health earlier on this post. Finally found it. It is called 'Natural Therapy For Your Liver,' by Christopher Hobbs. He is a licensed acupuncturist and herbalist, so it is a bit alternative. But I found it very informative and he does list a 'recipe' for liver/gallstone cleanses, if somehow that is a factor.
Hope all is well.
Claire
[ 15. February 2007, 10:08 PM: Message edited by: clairenotes ]
Posts: 1111 | From Colorado | Registered: Oct 2006
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posted
I get a liver and gall bladder scan every six months after my gastroenterologist found 'abnormalities'. My liver has blood vessels coming together in a way that could lead to a cancerous growth he said but it has not yet and he said it could just be some weird anomoly.
They described 'cysts' on my gall bladder...
I have had three scans over six months...I tried to drag out of them if they have improved since my antibiotic treatment but no one will answer that for me and I haven't really pushed it. I go to the hospital for the scan and then a month lapses before I see my gastro so I tend to forget to pursue my questions.
I will tell you this. I started doing a general herbal parasite cleanse....and it has helped a lot in easing all of the gut pain I have experienced.
The belief that tapeworms for instance are only prevalent in third world countries is not true. There is prevelence of them in the US too. It is so amazing to me how the medical community at large does not want to talk about intestinal parasites but they do exist in our population and I believe are causing all kinds of chronic symptoms.
Good luck and hope you get answers soon. Just don't panic...I did when they first told me that I had 'cysts on my liver' and now I know it is probably just another 'lyme thing'.
Take care...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
As usual, you all make me feel much better and I SO appreciate your posts!
I am NOT going to panic, no I'm NOT, and it wouldn't do any good anyway because my consult with the GI doc isn't until the last of the month.
Dr. J in NC was the one who thought I had a problem and it is to his credit that my primary care doc took his advice and ordered the scans.
However, I have been symptomatic for a while and that is getting worse. I was sure scans would show gallbladder trouble but was just stumped
when they said liver "cyst." The worst symptom for me is shortness of breath, not the kind that I experience from coinfections, but just like there
isn't room enough for my lungs to expand. My daughter could feel the outline of the hard "thing" just left of my ribs. She has
watched cyst removal from a patient's liver in her nursing classes and thinks it is "cool" how they move the table to position the patient instead of
making the doctor move all around. She also said that with some cysts, if it is a cyst or cysts and not a tumor, a rupture is possible and
to be avoided. I just want to get the thing OUT OF ME! I haven't been able to use my Bi-Pap sleep machine because of the shortness of breath
when I am horizontal. Now my sleep doc wants to increase the air pressure of the machine since I keep pulling the nasal pillows off in the night
because I feel like I am smothering. It's always sumthin!!!!
Hey Cave, I am starting to get the feeling we are twins separated at birth. I sure do thank you for looking up the article....and I will
definitely ask about the tapeworm or parasite thingy too. THAT one makes me squirm (oh what a pun) just to think of it!
Here is another question: if you were me and were definitely positive for Lyme and Mycoplasma Penetrans and haven't started tx yet, have blood
tests that indicate a VERY over-taxed immune system.....where would you start? I know it's unlikely I'll be getting ABX soon and I've considered
the Buhner protocol. Should I try to boost immune system? try to detox? attack coinfections first? I really don't trust my lymebrain to understand
all I think I should know to get started doing much of anything on my own. I've had umpteen different symptoms and diagnoses over the years which now
make sense as being due to Lyme disease, but the sx are definitely getting worse and causing more problems than since I had to quit working almost 11 years ago.
So, AFTER the GI doc does his thing, whatever that is, and based on the different tx, detox and immune booster protocols out there, WHERE SHOULD I START? I live alone and my tiny family are all
sick too, though not as bad as me. I haven't driven a car in quite a while because I scare myself being distracted by noise and poor eyesight, being overstimulated too.
I cannot herx too badly because there is no one to talk me through it and encourage me not to stop. I will need to find and buy products online. ANY guidance you can offer would be wonderful.
Thank all you sweet, caring, thoughtful, SMART, brave, loving souls! Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Hey Miss Janet,
I am so sorry to read about these developments. Please accept my most heartfelt condolences for your Aunt. Know that I am keeping you close in my thoughts and prayers as you work through all the issues at hand.
It looks like you have been given some very good advice by everyone...so, I don't really have much to add here of significance.
My opinion on where to start would be that of ABX as well...when you can get a hold of them. And to start SLOW.
It is usually recommended that co-infections are tackled first in the overall treatment plan, as LD has a very hard time leaving when co-infections are complicating things. They will all make each other worse in symptomology and severity.
Many docs also do a co-infection protocol in conjunction with an LD protocol plan. Babs is usually first in line for treating.
We all know that testing is so inaccurate for everything, so personally I feel it very wise to run through all the co-infections a bit with a trial of meds to see how one reacts.
Symptomology as well as med reactions will tell you and your doc so much more than any testing ever will.
I too had a lot of abdominal distention and weight fluctuations before and during treatment. I still do every now and again, but it is better. Remember, yeast can be a factor here with weight, distention, fatigue, SOB, fog...weather you are on ABX or not. Diet is so important.
Mycoplasma could have a lot to do with the above symptoms. Babs is also a big SOB, fatigue, etc., culprit. GI issues usually send up a red flag for Bart, but not always...just throwing some ideas out there...so I can confuse you more
Hang in there! Much love, M
Posts: 7052 | From Colorado | Registered: Mar 2003
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Cave, I will post my blood test results which no doctor yet has explained to me so that I can understand it. Dr. J just said, "Well, you're on
overdrive, aren't you!" Sailed right past that to offering me hope that "someday soon" he will be able to prescribe ABX again. From what I have
read here lately, it doesn't look promising. Anyway, here are the results. Maybe you or someone with some experience with this stuff can
explain it to me:
Lymphocyte Subset Panel 1 ABSOLUTE CD3+ CELLS 3356 HIGH (840-3060) CD8 SUPPRESSOR T CELLS 58 HIGH (12-42) ABXOLUTE CD8+ CELLS 2163 HIGH (180-1170) HELPER/SUPPRESSOR RATIO .60 LOW (.86-5.00) ABSOLUTE LYMPHOCYTES 4061 HIGH (850-3900)
IGF-I 90 LOW (92-190)
All these tests were run through Quest. Whatcha think?????
Feet on the ground, head held high, eyes on the LIGHT! Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I've no idea about the test results but you reminded me what I was told when my crazy tests came through...
"It seems your B cells and T cells are not speaking." Yah, that cleared it right up for me.
Hang in there, kiddo!
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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She also said that with some cysts, if it is a cyst or cysts and not a tumor, a rupture is possible and ![[bonk]](graemlins/bonk.gif)
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