I know I have posted on this last week while I was in hospital-but I am so confused and really need help!!! Please!!!
I was in the hospital for 2 weeks-just got out a couple of days ago.
I was put in because of severe pelvic pain, fever, nausea and vomitting.
It turns out they found a 5 cm. mass in my lower left abdomeon region. I told them about a mass in my right breast that really has been bothering me for about a year.
To make a long story short, they found multiple nodules in my neck, and did a cat scan and there was a spot in my lungs.
They tested for lymphoma-this was the only test they did-they mentioned frequently of doing a needle biopsy-but it was never done???
The lymphoma test came back negative they let me go from hospital-even though I was still very sick.
I am not any better-in a great deal of pain-I am taking Hydrocodone and diuladid and nothing is touching the pain.
I have all of the pain medicine that I could ever want or need and it is not helping.
I am so scared and really need someone's help on this ASAP-I am so sick and can't and won't live long like this.
I don't have any money, no LLMD and the only doc that is treating me is my cardio who did my open heart surgery!
I just feel like he has given up-this is not his terriotory!
Please help Me!!!!
Posted by oxygenbabe (Member # 5831) on :
Maybe they're granulomas? Something like sarcoidosis?
Posted by astriapage (Member # 17120) on :
Please help me guys????
Posted by ugagal (Member # 18471) on :
Did the doctors say why they did not do a biopsy?? If possible, I would definitely get a second opinion ASAP.
Posted by treepatrol (Member # 4117) on :
bartonella
Posted by lou (Member # 81) on :
Here is an article on masses associated with bartonella and other infections. Seems like I have also heard of masses associated with lyme.
Ned Tijdschr Geneeskd. 2004 Aug 14;148(33):1636-41.Links [Subcutaneous nodules with malignant presentation, but caused by infection] [Article in Dutch]
Universitair Medisch Centrum, Afd. Interne Geneeskunde en Infectieziekten, Postbus 85.500, 350o8 GA Utrecht.
Three patients, a woman aged 32, a boy aged 6.5 and a man aged 56 years, presented with a subcutaneous mass suggesting a malignancy: respectively a rubbery swelling, painful to the touch below the left scapula, a partly massive, partly soft swelling on the inside of the left upper leg, and a non-fluctuating mass near the right eighth rib, parasternally.
Additional diagnostic investigation revealed an infectious cause: respectively Mycobacterium tuberculosis, Bartonella henselae and Salmonella typhi. Antimicrobial therapy was successful. Subcutaneous masses suspected of being a benign or malignant tumour are sometimes caused by an infection.
The differential diagnosis is extensive. Sometimes the travel anamnesis yields helpful information. It is concluded that besides histopathological examination, microbiological investigation can play a major role in the evaluation of subcutaneous masses.
PMID: 15455512 [PubMed - indexed for MEDLINE]
Posted by lou (Member # 81) on :
Here is another one:
Chirurg. 2008 Mar;79(3):249-51.Click here to read Links [Painful soft-tissue swelling of the upper arm] [Article in German]
Cat-scratch disease is an infection by Bartonella henselea and resolves spontaneously. We present a case of untypical Bartonella infection which was misinterpreted by MRI as a soft-tissue sarcoma of the upper arm.
The histological findings of an incision biopsy were unspecific, without signs of malignancy. The tumor was excised completely and the final histology, however, showed no evidence of malignant changes.
The Bartonella henselae infection could be confirmed by polymerase chain reaction. The untypical presentation of cat-scratch disease should be considered in the differential diagnosis of clinically suspected soft tissue sarcoma.
PMID: 17443304 [PubMed - indexed for MEDLINE ---------------------------------------------
BTW, you better do whatever it takes to get a lyme doctor.
Posted by nenet (Member # 13174) on :
astriapage, I am SOOOO sorry for all that you have been going through the last few weeks, and right now. I really feel for you and wish I could help you personally.
You really need to find a way to get to a LLMD and right now you need to get a referral to an oncologist so they can rule that out.
Your LLMD will be able to help guide you to someone to check for bartonella nodules or human granuloma (caused by TDB).
Bottom line, you need to get help, whatever way you can. I know you say you don't have insurance or money. I am so sorry - I am in this position now as well, and I am unable to work and my husband was laid off. I understand the fear and feelings of helplessness, but you can get through this!
There are many in your/our shoes, and some have found options to get the care they need. We need to pool our knowledge and resources and see how we can think you out of this problem ok?
I know there is a thread up top of Medical that addresses this problem of no money or insurance and still finding treatment and care. I will post it here, and bump your thread to the top for more input!
"So, what DO you do when you run out of money for treatment?"
I'm not sure if that will help in this case - seems to be more about alternative Lyme treatment, not what you need at this exact moment.
I think bettyg also has in her Newbie package some info on how to deal with no insurance as well. I have had such bad neuro Lyme I still am unable to read through it, but I know it's there.
Please take heart, this is solveable - and we care about you!
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Posted by nenet (Member # 13174) on :
Also, I am so sorry you are in so much pain. You definitely have my sympathy and concern.
One possibility is I would go to a different ER and complain of terrible abdominal pain and not mention ANYTHING else, and maybe they will be responsive and do the actual biopsy - or at least give you a referral to a sepcialist for follow-up.
You really need a new set of eyes to look at you without any bias, and address this problem!
Tracy9 finally got into a good hospital and got a good hematologist for her DVT - all from something entirely unrelated to her main problem, just from getting lightheaded at the new hospital during regular bloodwork. You just never know.
You have my good thoughts and best wishes coming your way.
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Posted by Tincup (Member # 5829) on :
Hang in there!
Posted by Boomerang (Member # 7979) on :
Definitely go somewhere else and get checked out!
Posted by glm1111 (Member # 16556) on :
Astria,
Are you drinking enough water? You can become very dehydrated from pain meds. Then the pain meds won't work an can become a vicious cycle.
I know this doesn't solve the nodule issue, but it may help in another way. Sorry you are going through this, you have some good input here.
Gael
Posted by Melanie Reber (Member # 3707) on :
Oh Dear,
I'm so terribly sorry that you find yourself in this unreal predicament at this time. You have all of our heartfelt sympathies and compassion.
I am also grateful though that you are reaching out for help and that this desire outweighs your overwhelming fear from not finding the help you have sought thus far.
There are many experienced souls here that are more than willing to offer advice. Please listen to them.
I would like to put you in touch with a veteran patient that I feel could address the pelvic issues for you. Unfortunately, she has been through it all. Please email or PM me for her contact info if you are interested.
Yes, tickborne disease can certainly cause many lumps, bumps and masses to develop. Bartonella is a likely suspect, but it would be well advised for you to be checked over thoroughly by an expert to rule out other issues as well.
Please continue to reach out so that we may all help to find solutions. In the meantime, just know that we care deeply.
Much love, Melanie
Posted by nenet (Member # 13174) on :
Has anyone heard from astriapage since yesterday? Does anyone have a way to contact her and check in on her condition?
Astria if you're there, there are many people worried for you! I hope you can make it back to a different hospital somehow.
Please let us know how you are if you can ok? We need to keep finding a way to help your through this.
Posted by Lymetoo (Member # 743) on :
I hope she comes back soon!!!
Posted by astriapage (Member # 17120) on :
I am here-it has been a tough day!
I can't possible fathom going to a different hospital at this point.
I have some real bad horror stories-and am so scared.
Thank you guys for your concern-
Posted by Tracy9 (Member # 7521) on :
Astria, You HAVE to have someone driving the bus. You cannot handle this yourself. You at least need a good primary care doctor to refer you to the appropriate specialists to work up all the things that are going on with you. Right now I would say that is more important than an LLMD.
Is it correct you have NO insurance? If so, why aren't you on Medicaid? With your medical problems and if you have no money, there is no reason you can't get approved for state medical assistance.
Have you applied for disability, SSDI? Free care at the hospital?
It just doesn't make sense if you are so sick and have no money that you don't have insurance; have you looked into state Medicaid? That is what we have and it has been a lifesaver.
Posted by astriapage (Member # 17120) on :
I have been denied for my NC state Medicaid 3 times with a lawyer, now it has to go to superior court!!!
Go figure?
No, it does not make sense, but my hands are tied and I have no where else to turn. I also have been denied for disability twice.
Trust me-when I had open heart surgery-I at least thought that I would finally be able to get help!
Posted by Tracy9 (Member # 7521) on :
That is awful; is there a clinic near you that sees pts on a sliding scale basis? Why are they denying you? Do you have too many assets????
Posted by astriapage (Member # 17120) on :
No assets at all. Not even a dollar to my name!
They say that I will not be disabled longer than 12 months. And this is for medicaid.
I never imagined medicaid would be so hard to get!
Posted by Tracy9 (Member # 7521) on :
OK, it's the same in my state, but I had no problem getting a doctor to sign off saying I'd be disabled for at least 12 months. Do you need more than a doctor's report? That's all I needed. Do you have a doctor to sign off on it? It would be worth paying for a PCP visit to sign the form if nothing else.
Posted by astriapage (Member # 17120) on :
Thanks Tracy
I will ask my cardio if he can help. Noone has mentioned that to me before-I even have a lawyer and everyone has said there is nothing else they can do about my NC medicaid?
Thanks again
Posted by nenet (Member # 13174) on :
astriapage, I hope that your cardiologist or someone can fulfill that for you! Good luck!
How is your pain right now? I have been very worried about you, as have others.
Posted by astriapage (Member # 17120) on :
My pain is very bad-even the heavy duty pain killers do not work?
The pain is so bad I can't stand up straight.
It also makes me sick to my stomach.
Posted by bettyg (Member # 6147) on :
{{{{{astria}}}}}}
i'm so sorry you are going thru all of this xox
Posted by sunshinyday (Member # 14337) on :
Astria,
I'm so sorry that you are in so much pain! I'm
praying that you will get the help you need.
Don't stop until you do!
Posted by Pinelady (Member # 18524) on :
I believe I would hire a different lawyer.
I know it is ridiculous but it is a shame you
have be to near death to get help, but if you get
a good lawyer, you can get back paid.
I know a lady who had female cancer that had ate a
hole all the way thru her colon. She had to have
it removed and was with colostomy. The state
offered her 10.$ in food stamps and that was all.
With a few well placed and heart felt letters to
our congressmen and senators she got her rent
paid, a medical card for her treatment,
her utilities paid and plenty of food stamps
to get her healthy again. You can do this and
your family, and friends can help. Prayers for
you.
Posted by Hoosiers51 (Member # 15759) on :
Hugs to you, astria. Sorry you are going through this, and I hope for answers soon!
Have you applied for federal disability as well (SSDI)? This would be separate "people" looking at your case than Medicaid. At least if you can't get Medicaid, this would be a source of money for you to help pay for some of this.
The sooner you apply, the better, because if you win you get "back pay" for all the time they spent making the decision.
You may get denied the first time, but that is common, so just keep reapplying. Your back pay will still count from when you first applied if you eventually are rewarded it.
Sorry for all your problems, and best of luck! Know there are people here who care and want to see you better! Posted by bettyg (Member # 6147) on :
astria, if you are thinking of filing for SSDI, disability insurance claim for having worked 5 continuous yrs. in last 10 years for 20 QUARTERS WORKED to be eligible for this, click on my newbie links, and read thru table of contents up front and SSDI info is in the EXTREME END of all my info.
you can WIN, 1ST TIME; 1ST TRY, but you need the documentation and SUPPORTIVE DRS. TO COMPLETE Q/A on your doing physical work! i explained it in another post elsewhere, and too pooped to type it again.
you could click on my 1st box, look at RECENT VIEW just posted, and it would be in last 2-4 posts at most. i post alot. good luck.
Posted by astriapage (Member # 17120) on :
I have been denied for SSDI 2 times. I have worked enough to get $1000.00 a month, and am now owed over $25,000 so I would love to get it.
I have a lawyer which does not seem to be helping any. I hired her after getting denied twice.
I can no longer fight the system. My energy is now solely into surviving.
Thank you guys for your input.
I have tried everything and feel like I am at the end.
I have no money, hardly any food, am lucky right now to have a roof over my head.
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