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Topic: Need Help from Medical/Scientific Types (like Flo! (Read 437 times) |
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Lizzie2
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Need Help from Medical/Scientific Types (like Flo!
« on: Mar 31st, 2006, 11:20pm » |
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OK so my new internal med doctor left a message on my voice mail tonight because she has some of the results back of my hypercoag studies.
-My anticardiolipin antibody is in the equivocal range.
-My lupus anticoagulant is positive -->borderline, but still positive.
She feels that given my strong family history and my own personal medical history, then I have to follow up with a doctor at Cardeza, which is a hematology/oncology center at Jefferson. She recommended the name of someone I should make an appt with. She also said she will be mailing me a hard copy of the test results so that I have them when I go to the appt.
I've spent a lot of time thinking about all this... Now, if antiphospholipid syndrome (APS) is the underlying culprit, I have read things that connect APS to DVTs, avascular necrosis, and even some types of migraine with aura.
My own clotting-related issues have been:
-possibly the NDPH/chronic migraine (and less so, the clusters)...especially the auras that have hit with severe vertigo, ringing in the ears, vision loss, confusion, and memory loss
-avascular necrosis
-2 DVTs in my left arm
-benign tumor of blood vessels (hemangioma) that grew to the size of a golf ball
-possibly the nonspecific white matter lesions?? (I won't pretend to know the
first thing about these...I really don't - but it's more of a question in my mind!)
-possibly other random orthopedic injuries that seem like mild daily use injuries that can't heal properly?
-possibly the fact that every time I get my eyes checked, my vision changes
drastically - sometimes for the better and sometimes for the worse. my former
eye doctor has said repeatedly that the only explanation he can offer for this
is changes in the microvasculature. He'd had me tested for diabetes, but I
later told him that I thought it was perhaps due to having my eyes checked while either on or off steroid tapers.
-While opposite from clotting, the bad nosebleed that required emergency surgery last April. My ENT told me some rare percentage where this kind of thing happens so far after surgery. When he went in to cauterize, he said everything was "mush" inside my nose - no clear vessel to cauterize as they were all oozing. (Gross, I know...but definitely odd...)
After the emergency surgery, my ENT had consulted with hematology who ran panels that looked at bleeding, but not clotting. Those panels found a high factor VIII, but that was never addressed - as long as any hemophilia-related disease was ruled out. And the high factor VIII alone didn't seem to mean anything.
So what do you other medical/science/research types think? I know obvious other things to consider are SLE and other autoimmune diseases, although my ANA has been negative twice in the past, and I don't know if she has the results of this most recent one. I looked up the credentials of the doctor she's sending me to, and I'm hoping frankly that it's just because he works at Cardeza and is a hematologist! His specialties are Hematology-Oncology, Medical Oncology, and Medical Oncology - Bone Marrow Transplant.
There aren't cancer issues related to aCL and LA are there? I guess there's probably a whole world of info out there on this stuff, and I've read quite a lot of it - but I think I need to be more specifically directed at times!
Sorry - I know this isn't directly a CH issue, but this is definitely a HUGE issue for me, and I feel like I can count on you guys for support. Even if you can't solve my medical mystery, you all make me smile and are the most supportive bunch of people that I have in my life!! For that, I'm forever greatful. 
Any help, suggestions, or ideas would be GREATLY appreciated!!
Carrie 
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| « Last Edit: Mar 31st, 2006, 11:26pm by Lizzie2 » |
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pattik
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Re: Need Help from Medical/Scientific Types (like
« Reply #1 on: Apr 1st, 2006, 9:06am » |
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on Mar 31st, 2006, 11:20pm, Lizzie2 wrote:
Sorry - I know this isn't directly a CH issue, but this is definitely a HUGE issue for me, and I feel like I can count on you guys for support. |
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Yes, you can count on us. I'm not one of the medically saavy people to whom you were referring, but there are some very knowledgable people here who may have some very good ideas. Good luck with this mystery, and try not to wander into thinking about worst case scenarios. Hugs. Patti
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The voyage of discovery is not about seeking new landscapes, it's about having new eyes--Marcel Proust
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floridian
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Re: Need Help from Medical/Scientific Types (like
« Reply #2 on: Apr 1st, 2006, 10:55am » |
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Carrie,
just read the post and have to go out to do stuff, will get back with you later.
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sandie99
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Re: Need Help from Medical/Scientific Types (like
« Reply #3 on: Apr 1st, 2006, 11:02am » |
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Carrie,
you've got my support, always... 
Best wishes & PF days,
Sanna
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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floridian
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Re: Need Help from Medical/Scientific Types (like
« Reply #4 on: Apr 1st, 2006, 4:59pm » |
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Some herbal things to consider for autoimmune disease include ganoderma and codonopsis - both shown to reduce autoantibody formation. Both are considered relatively mild and tonic. My wife is on a codonopsis tea after a flare-up in her autoimmune thyroid disease. Tryptergium is another herb that is often used for autoimmune diseases, but it has a high side effects profile and is not something for the average do-it-yourselfer.
Quote:: Lupus. 2001;10(7):461-5.
Prevention of autoantibody formation and prolonged survival in New Zealand Black/New Zealand White F1 mice with an ancient Chinese herb, Ganoderma tsugae.
Lai NS, Lin RH, Lai RS, Kun UC, Leu SC. Department of Medicine, Tzuchi DaLin General Hospital, Chi-yi, Taiwan, Republic of China.
For centuries, Chinese medicine has regarded Ganoderma, a fungus (Myceteae, Amastigomycota, Busidomycetes, Aphyllophorales, Polyporaceae, Ganoderma) also known as 'Ling Zhi' in Mandarin, as a premium remedy for many diseases. Until now, no convincing data regarding its therapeutic effects in vivo on autoimmune diseases have been demonstrated. In this study, a controlled protocol was conducted in which New Zealand Black/White F1 mice were fed standard chow with prednisolone (0.5 mg/kg/day) or Ganoderma tsugae extract, commencing at 2 months of age. It was found that the F1 mice responded well to Ling Zhi extract. Ling Zhi improved the survival rate of lupus mice, decreased the amount of proteinuria, decreased serum levels of anti-dsDNA autoantibody, and showed evidence of decreased perivascular and parenchyma mononuclear cell infiltration in vital organs.
PMID: 11480842 [PubMed - indexed for MEDLINE] |
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Quote: Am J Chin Med. 1993;21(3-4):257-62.
The effects of Chinese herbs on improving survival and inhibiting anti-ds DNA antibody production in lupus mice.
Chen JR, Yen JH, Lin CC, Tsai WJ, Liu WJ, Tsai JJ, Lin SF, Liu HW.
Department of Internal Medicine, School of Medicine, Kaohsiung Medical College, Taiwan.
Systemic lupus erythematosus (SLE) is an important autoimmune disease with multiple organ system involvement. From preliminary studies, we have found that six Chinese herbs: Atractylodes ovata, Anqelica sinensis, Cordyceps sinensis, Liqustrum lucidum, Codonopsis pilosula and Homo sapiens can improve defective in vitro interleukin-2 (IL-2) production in patients with SLE. In order to investigate the in vivo effects of these herbs, we used NZB/NZW F1 mice, a typical lupus animal model used to test these herbs. It was found that C. pilosula, H. sapiens and C. sinensis could prolong the life span of female NZB/NZW F1 mice and inhibited anti-ds DNA production. Although A. sinensis could prolong the life span of experimental mice, it did not inhibit the production of anti-ds DNA antibody. These herbs may have great potential for the management of human SLE in the future.
PMID: 8135170 [PubMed - indexed for MEDLINE] |
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Yes, the H. sapiens means human - placenta in this case, not something I would reccommend, but it might have growth factors, immune complexes, or who knows what. I have been taking cordyceps - doesn't agree with my constitution, I think it rubs my immune system the wrong way (increases Th1 immune responses).
Will do more digging - am not real familiar with all the possible diseases and interacting mechanisms.
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| « Last Edit: Apr 1st, 2006, 5:11pm by floridian » |
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Charlotte
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Re: Need Help from Medical/Scientific Types (like
« Reply #5 on: Apr 1st, 2006, 5:01pm » |
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I will be praying for you.
Charlotte
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| « Last Edit: Apr 1st, 2006, 5:08pm by Charlotte » |
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Lizzie2
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Re: Need Help from Medical/Scientific Types (like
« Reply #6 on: Apr 1st, 2006, 10:18pm » |
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Thanks for the support!
Jonathan,
Thanks for the info you've posted so far. I'm looking forward to reading it more thoroughly in the middle of the week once I have time off. Tomorrow is my 3rd 12 hour shift in a row in trans nursery.... I'm gonna need all the strength I can get to get through one more day of this craziness!! What a weekend it's been....
I also will need to call my internal medicine doc on Monday and schedule an appt with that heme-onc to see what they think. I don't know if she's gotten back all of my lab test results yet, but I know she is mailing some of them to me to take to the hematologist, so that may tell me a little more. I like to have them in front of me. She did the tests through Quest Diagnostics, which is practically driving me nuts because I always get my labs done at my own hospital so I can print the results out for my own files. I like to be able to see the results of all tests, normal and abnormal, because I learn from each and every one of them. I've also caught important things in my own medical care that may have been overlooked in the past because I've had my own results and have the background of knowing a lot of related patho. So it's eating me up that I don't have all the results on a nice printout in front of me to look at!! I trust this doctor a lot more than most, however!
At the end of the week, I'll finish up all testing she wanted me to have because I'm getting my bubble echo done to look for the PFO. After that is finished and read, and all the lab results are back, I'll probably have another appt with her to figure out where we go from here. However, she may tell me Monday that she wants me to see the hematologist first.
Given my medical history, it really is no surprise that these test results have come back abnormal even a little bit - but it was a little surprising to her that nobody had ever checked these things.
I'm very much hoping that we're on the right track!! Now time for bed as I don't have any energy for work tomorrow as it is - let alone after losing an hour's sleep due to daylight savings!!
Thanks again for everyone's support and info!
Hugz,
Carrie
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