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I made a post back in December regarding my condition and symptoms. https://patient.info/forums/discuss/my-costo-and-tietze-symptoms-629423
I would like to update you all as I find a lot of people post at their worst and dont give updates regarding there condition following improvement. I thank those that do, as I think that is the only way we move forward as a group in trying to understand the many symptoms and causes of these conditions.
Since my post I have seen numerous doctors and none of them have given me answers. It almost becomes a drain on medical expenses while getting the same answers every time, "your not dying but we don't know what is causing this or how to treat it basically". So they give you a whole bunch of meds like anti-inflammatory drugs or steroid medications that only ever treat the symptoms and never the cause.
Please understand I am no doctor and I do would not recommend going against your doctors advice. I would also recommend seeking medical advice before following any advice, including mine, given on blogs or forums. I am just sharing my story and what i have found specifically relating to me and my condition. Hopefully you can use this as an aid/investigation tool into your own conditions.
since my post I have had 2 more ECG's even though I didn't want to as I am now pretty certain it has nothing to do with my heart as I saw a cardiologist who checked everything and gave me the all clear. I have also been for other tests such as an ultrasound which came back perfectly fine. I was then referred to a Doctor by a friend of mine who checks the entire spectrum of your health. I had more blood tests done and although all the usual tests came back exactly how they they normally do, all fine, there were a few new discoveries in both the blood tests and physical exam that were really interesting.
Let me first speak about the physical exam. For the record I am a male 28, and I have always had an active lifestyle. During the exam the doc checked my swelling and pain points (ranging from sternum to lower ribs/abdomen to occasionally in my back area) and found that my spine is ever so slightly twisted towards my left side. This is the side where 95% of all my pain/swelling occurs although I do have symptoms on my right side as well. She said this could be caused by a number of things, injury/posture/bad form when lifting and even sleeping badly for long periods of time to name a few. This, in my case, is apparently putting strain of the left ribs which causes the cartilage to become inflamed and hens the pain/swelling. This is not a 100% accurate diagnosis yet as she still wants to do some tests to confirm it is in fact the cause. I showed her my chest x-ray and she explained that this can often be missed from a chest xray as it is taken from the front, however if you were to take an x-ray from your head down (in other words aiming straight down on your head instead of from the front) it would show immediately. I am hopeful that this may be the cause as it is treatable for the long term.
I will get to treatment after I discuss the blood test results as it is important to marry the two together as potential causes.
As mentioned she looks at the entire spectrum of your health, and included in my blood tests this time, she requested some tests that had never been done. I cant remember all the names as they all came back ok except for one. I tested positive for the Coxsackie B virus. Now I will not by any means pretend i understand everything involved with this virus but I will share my limited understanding and what I have learned from her so far.
The Coxsackie Virus can come in the form of Coxsackie A's (responsible for hand foot and mouth disease) and coxsackie B's.
Quote from wikipedia "(Symptoms of infection with viruses in the Coxsackie B grouping include fever, headache, sore throat, gastrointestinal distress, extreme fatigue as well as chest and muscle pain. Can also lead to spasms in arms and legs. This presentation is known as pleurodynia or Bornholm disease in many areas. Sufferers of chest pain should see a doctor immediately)" - My understanding is that most people will get this virus and not even know it. It presents as cold/flu like symptoms and our immune system then does a find job of sorting it out. however as with anything there can always be certain cases where this is not the case.
***My understanding is the Bornholm Disease has very similar symptoms to that of Costochondritis and is often misdiagnosed as Costochondritis even though people also often misdiagnose chosto. So its an impossible battle always trying to figure out what the exact causes are. Please read up on it.
It is important to note that the Coxsackie virus is very common. It can be picked up from anyone that is infected by there bodily fluids, simply by a sneeze or cough etc. It can also be picked up through the fecal oral route. Now this is important as it unfortunately is very easy to pick up this virus as you would simply like the flu.
**Again please understand I am no doctor and I stand under correction with my entire post. I am still learning like all of you and trying to understand everything myself. I am trying to share so as a group we can maybe get an answer for some of the causes. I am very much open to anyone who has a better understanding of this than I do and will gladly update my post accordingly.
Now you get different level readings in your blood of this virus. Mine are low which is good as it POSSIBLY indicates I am at the end of the virus OR it is an old infection that i happen to pick up some time ago. I do not have knowledge of whether this stays in your blood stream or not, again I will update you as I go. I read that this should only affect you for a limited time, however if this is the cause, I have been battling with this for 7 months now with no improvement. (I do not get the flu like symptoms, please refer to my last post for a full list of my symptoms). It is maybe worth investigated or speaking to your doctor to test for this.
So in summary my condition could be caused from either of these or none. I will only discover that once treatment for both has taken its course. My treatment paths are the following.
Spine - I am seeing a biokineticist on Friday morning to adjust my spine. I believe this can be achieved through certain exercises/stretches over a period of time. *It is important to note here that there is no visual evidence or strange feeling of my spine being slightly out of place/twisted. It feels normal to me and therefore I would have never even guessed my spine.
Coxsackie - Because this is a viral infection it cannot be treated by antibiotics. The doc has given me suppliments in order to aid the swelling and boost my immune system to fight the virus should this be the cause. *Again its important to note that after being on these supplements for a week, my symptoms have improved slightly. This is not a placebo effect as the swelling has visibly gone down. Not by a lot but enough to notice. I will list them below. I have stopped my anti inflammatory meds (Celebrex 200) which I was on for 2 months straight and the supplements have helped so much more. I was on steroid medication for a short while but found they did not help me at all.
- Fish oils - omega 3
- Ubiquinol Co-Q10
- Vitamin B12
- Bio Curcumin
- Milk thisle
I will keep you all updated as I go. As everyone does, I hope to get to the bottom of this and shed some light on what some of the causes may be. there may be other causes, but if this mine, it may help some of you.
For those of you who are battling stay strong, I know it is difficult and I am going through hell myself on a daily basis. But remember you are not alone and places like these are perfect for days you need to vent or just get some support and encouragement. the mental aspect is half the battle. There are some amazing people on this forum who you can actively chat to.
Take care for now guys, untill my next update.
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