1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Brain Cells Making us Sick? The microglia connection in ME/CFS & Fibromyalgia
Simon McGrath looks at theories that microglia, the brain's immune cells, could trigger and perpetuate the symptoms of ME/CFS and fibromyalgia.
Discuss the article on the Forums.

Thoracic Aortic Aneurysm

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by Overstressed, Jan 8, 2013.

  1. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hello friends,

    as some of you might have read in another topic here, I'm suffering from a thoracic aortic aneurysm, which was diagnosed last October by my cardiologist. The TAA measures 1.77 inch, and last year(2011) it was 1.57 inch. This is a big increase in only one year. If it reaches 1.96 inch, it becomes critical, and life-threatening.

    In the meantime, I had two independent consultations with specialists on syndromes where this aneurysm might be involved: marfan, Behcet, Ehlers-Danlos, Reiter, psioriasis... None of the consulted instances think I suffer Ehler-Danlos, Behcet or Marfan. One of the instances test me on genetic mutations which are seen and known with these illnesses. Results are to be expected within 3 to 6 months. They also test me on the known mutations that are responsible for TAA. Of course, the known genes involved is just the top of the iceberg, there are still a lot to be discovered, and are not known, yet.

    So, most likely, my answer is not to be found in that area. So, I went searching, seen the nature of how my illness started, and to my surprise(and not), people infected with HIV have complications during their illness, of which TAA is surely one of them. This HIV-TAA differs from the 'normal' TAA such, that with HIV+ people, the TAA occurs with relatively young people, and is called in the literature 'pseudo TAA'. Tissue biopsies clearly show a different picture as with 'normal' TAA. Another feature of HIV related TAA is, that it's agressively progressiv, meaning, the aorta is becoming wider over a much shorter period of time. Most of the specialist don't know this, and I'm sure my cardiologist doesn't know either, since he wants to see me back, next year October, most likely I'm dead by then.

    Since I was diagnosed having CFS, I'm wondering whether there are friends here suffering from the same? If not, I'm wondering if I have another illness? There are some folks here on the forum, of which the illness started the same way as mine, then they should check with their cardiologist if they are in danger. If the aorta ruptures, you might be dead by the time you say 'HELP'.

    Best wishes,
    OS(incredibly worried).
  2. ahimsa

    ahimsa Senior Member

    Messages:
    1,049
    Likes:
    912
    Oregon, USA
    Thanks for sharing this information. Sorry that I don't have any answers to your questions.

    I do have a quick question for you. How did you get the diagnosis? Were you having some symptoms? (and if so, what were they) Or was there some sort of screening process for another problem and this problem was found instead?

    I'm just wondering how this was found.

    Last but not least, sending you some :hug: HUGS :hug: to help you get through this stressful time.
    Overstressed likes this.
  3. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    493
    Sydney, NSW, Australia
    Hi Overstressed,
    Thinking of you. That is a lot for you to process, but also good that your Cardiologist picked up the problem. I am being checked out for some similar issues eg Behcet's, Familial Mediterranean Fever, Psoriatic arthritis, Lupus, Sjogren's etc. I'm also being checked for genetic Mito diseases and genetic connective tissue disorders like Marfan, Loeys-Dietz & Ehlers Danlos.
    My father had an Abdominal Aortic Aneurysm which grew to operable size.
    I also used to work with vascular surgeons & learnt a lot about aneurysms then. I learnt that the tendency to be aneurysmal is inherited.

    Did your cardio measure the aortic root diameter as well? How were all your heart valves?
    You may like to read up on Loeys-Dietz Syndrome & consider that as well.

    http://www.marfan.org/marfan/2290/Loeys-Dietz-Syndrome

    http://www.marfan.org/cms/uploaded_files/8XJIUG81F3/89/docs/factsheet_ldsormfs.pdf

    "Medical care for LDS is not the same as for MFS. The most important difference is the care of the aorta and
    other blood vessels. The care is different because life-threatening aneurysms in LDS are more likely to tear
    and rupture at smaller sizes than in people who have MFS. In LDS, tears and ruptures can also happen at
    younger ages and in locations not usually seen in MFS. For these reasons, surgery to repair aneurysms is
    often done earlier in LDS. In addition, imaging tests must look at blood vessels throughout the body using
    either CT or MR scans from the top of the head to the top of the legs."

    Genetic clinics move slowly & I'm finding that aspect frustrating! I'm booked for a cardiac echo & visit to a Cardiologist around the end of Feb. I already know I have a heart murmur/mild mitral valve regurgitation. So I'll be checking any changes there, and paying attention to aortic root diameter. I had a fairly recent ultrasound to measure diameter thoracic & abdominal aorta specifically, due to family history. Also had carotid doppler, as my father had blocked carotid arteries. All was OK.

    Maybe you need a plan in place, a letter and some info so if you have to go to hospital ER suddenly, they will know that you have a thoracic aortic aneurysm, and not waste time. I agree with you, & if it would set your mind at ease, ask for more frequent monitoring of the size of the aneurysm.
    Overstressed likes this.
  4. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hello ahimsa,

    the hugs are warmly received, thank you :)

    Concerning the diagnosis, I must say I had a plan when becoming 40, to get checked on an annual basis. During such a visit with my cardiologists, he observed a leaking valve. From my experience on this forum, leaking valves seems a common problem. The year after(2011), he noticed a widening of my thoracic aorta, but didn't tell me. During my last visit, last October, he told me that my TAA got wider again. He then immediately planned a CT, but since I just had a CT before of my brain, he planned an MRI instead. At his practice, he does the checks with an echo, and this is not so accurately. To make a long story short, my leaking of the valve got better, the last years, which is good he said. Overall, my heart got also better, he told me. I must say, I was nearly two years in treatment with Gc-Maf, so, I don't know how Gc-Maf contributed to that improvement. He even suggested last October to start 'that' treatment again, because I told him I stopped.

    I must say, I didn't have real symptoms, other than what the most(including me) experience, most probably due to malfunction of the thyroid(I suffer from hashimoto's), i.s. heart palpitations.

    Please ask if you have questions, or other concerns, as long I'm alive, I might be able to help :(

    Take care,
    OS.
  5. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi merylg,

    thank you for your thoughts, that's really kind of you :) Thank you for telling me about the LD syndrome, I was not aware of that. It looks the risks attached to LD are the same as Ehlers-Danlos? The thing is, these things don't run into my family at all, that's why I don't think that the root cause of my problem lies in there. It's possible of course, but it doesn't come to me as a surprise that these complications are well known with HIV. When I look at how I got ill, I must take into account that I got infected with a retrovirus, and that I suffer from the same complications. Irritatingly, I can't convince any infectious disease specialist this is the case, otherwise I might be treated with medication that maybe can slow down, or even put me in remission with this TAA. If I can avoid a surgery, I would.

    I don't know if the diameter was measured, I will ask my family doctor. Not only this illness is frustrating, to say the least, but also the ignorance and lack of information you have to deal with. You have to be a specialist yourself in order to receive the treatment you pay and deserve.

    Thanks for the tip about making a plan, but I fear that when my aorta ruptures, I'm dead. You don't have the slightest chance, I think. Unless I'm at the hospital at that moment. I think the chance is bigger winning the lottery :)

    Let me know how your consultation goes! Take good care of yourself, and many many thanks for your information! Sending you a *HUG* :)

    Best wishes,
    OS.
    merylg likes this.
  6. brenda

    brenda Senior Member

    Messages:
    1,259
    Likes:
    615
    UK
    Hi OS

    I have been looking for nutritional support to prevent (and reduce) aneurisms as my mother and her brother died from them (my mother had two). I have only recently started to do this but vitamin E seems to be important.
    Overstressed and merylg like this.
  7. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi Brenda,

    Vit-E seems to be a double whammy, it's bad for prostate cancer and since the stories about XMRV and CFS I stopped taking Vit-E. Could it be that Vit-E is beneficial for only abdominal aorta aneurysm, and not TAA?
    What seems to be beneficial for either abdominal and thoracic aneurysms is Doxycycline, or Losartan. Losartan downregulates the TGF-β,which seems to be efficient for aneurysms.

    Best regards,
    OS.
    merylg likes this.
  8. brenda

    brenda Senior Member

    Messages:
    1,259
    Likes:
    615
    UK
    Hi OS

    Thanks. Is that when they have already developed? I am looking for something to prevent them.

    best wishes
    Brenda
  9. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi merylg,

    what a forget to ask is, have you looked into homocysteïne, yet? You can find lots of literature on homocysteïne and associated cardiovascular diseases. I'm using a supplement called 'Synervit', that brings down the homocysteïne in your blood. Synervit is Folic Acid, B6 and B12 in one. This seems to be highly important. My homeopath ordered a homocysteïne test last september, and another test, I think lipoproteïne(I'm not sure). My homeopath concluded, my cardiovascular health was perfect, based on the results. Homocysteïne was low, and the other too, he said, which means there's no pressure on the aorta. The reason he ordered this test was because of my aneurysm.

    Anyway, Synervit seems to be beneficial for lots of other diseases, i.e. neurological(Alzheimer...). I buy it in the pharmacy, but you can buy it also online:

    http://www.ll-euro.com

    I'm using Synervit for years already, perhaps this is the reason the leakage of my valve improved, rather than the usage of Gc-Maf.

    Best wishes,
    OS.
    merylg likes this.
  10. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi Brenda,

    good question! I think you can see both as preventive, or at least have the ability to slowing down the disease. I have to check in which way Doxycyline might work, but it is known in quiet some cases of aneurysms, that there's a disturbance of the growth factor, more precisely the TGF-β. And Losartan seems to work also on that, to good success, it seems.

    Best wishes,
    OS.
    merylg and brenda like this.
  11. Overstressed

    Overstressed Senior Member

    Messages:
    401
    Likes:
    126
    Belgium
    Hi friends

    I've come across this article after reading a post of 'Emootje' on nucleotides RNA, in the antiviral-Immune modulators -topic. This article discusses the therapy of Uridine(RNA-component):

    http://www.ncbi.nlm.nih.gov/pubmed/18313046

    It seems it has hypotensive effects and a lowering of the pressure on arterial walls.

    Best wishes,
    OS.
  12. brenda

    brenda Senior Member

    Messages:
    1,259
    Likes:
    615
    UK
    Hey

    I just reduced my systolic reading by 20 points with juiced celery for a week. (Now 122 over 60) I am also a few weeks into low carbs, saturated fats, noprocessed food and especially no vegetable fats.
    Overstressed likes this.

See more popular forum discussions.

Share This Page