DVT and PE- AGAIN!

[posey]

Some of you remember back in Dec. of 2010 when I was diagnosed with DVT in my left leg and PE in my right lung. For those who do not know, DVT-Deep Vein Thrombosis is blood clot/s in the legs. PE- Pulmonary Embolism is blood clot/s in the lungs.

I went a year on Coumadin and in Dec. of 2011 they did am ultrasound on my leg and clots were gone. They also did a blood test called a D-dimer which helps in determining if there are any clots anywhere. The number has to be from 500 down. Mine was 200.

Just a week and a half ago I had shortness of breath. I waited too long but finally went in to urgent care. They hooked me up to oxygen as mine was low, did a cat Scan on my lungs and another D-dimer test. The D-dimer was 9,000 and I now have clots in my leg again and a huge one in each lung. Not one lung but both lungs. They kept me in the hospital for 3 days.


They do not know why this happens to me and esp. since it came back full strength in a months time. I have been told I will be on blood thinners the rest of my life.

Does anyone think that this could possibly be internal biofilm in my blood? I am seriously beginning to wonder but I ca't tell the Drs. that.

[scabdraggr]

It's my turn and I don't charge a dime.I can also explain things that you ask about.Let me know when you will listen to me so that you can heal.THIS IS A CHALLENGE FROM ME TO YOU!How about it and everyone is watching.If I hurt you or don't help you heal then the whole world will know it.Just think about the possibilities if I'm right.

[fritolay66]

Posey, so sorry to hear you are yet experiencing this again. You had mentioned you wondered if it had anything to do with biofilm. I sure can't answer that but there are a couple of ways to investigate it through the back door. And by your mentioning biofilm, then you are also wondering about infection causing biofilm?

Infections can cause coagulopathies, most often times they do. What we have been experiencing over the years specifically here, is that testing known infectious agents is dismally inadequate, and more often times than not, our testing comes up negative. Instead of testing for specific infectious disease/bacteria, we can test for antibodies and for toxin identification in the blood. Many bacteria produce antibodies, such as the H antigen, the O antigen, etc., that can be identified and used in diagnosis of suspected infection with other negative results.

Here are a few reasons as to why testing is so inadequate these days. most test for aerobic bacteria, and anaerobic is not. Additionally, many potentially infectious agents, bacteria included may not be testing positive due to the change in the genetics of bacteria. This can be a natural occurence or it can result from man manipulation. For example, the E coli outbreak in Germany last year. Its sufferers not only suffered from E coli, but they found pieces of Bubonic plague DNA in the E Coli. So some sufferers were also demonstrating symptoms of bubonic plague even though bubonic plague was not the original infectious agent, nor were they bitten by the oriental fleas identified as the resevouir of bubonic plague. So the entity Y. pestis was not found specifically, even though parts of the DNA were found within the E coli. These are two very real possibilities as to why we all test negative over and over again. I just wonder if DNA testing is available to us to pursue along with those antigens and toxins.

Blood coagulopathies can also result from genetic mutations we ourselves may harbor. Now a days genetic testing is easy and cheap, but for those needing interpretation, then it becomes more expensive.

Keep fighting Posey.

Frito

[scabdraggr]

Yes,This post is absolutely what we need in order to understand this disease,in my opinion,but then Frito says it so much better. Please Frito,MORE for us to read so that we can understand this in the proper language.

[fritolay66]

SD,

I am unsure as to what "more" you are asking for. I have written it here as simply as I can, but as for details, I could overload this board with them and bore a lot of people. Do you have some specific questions I could perhaps help answer, or if I don't know the answer, look into?

Frito

[scabdraggr]

Your post did so much to help me understand some things that I have had questions about.My post was to ask if there are more things that you can explain.I have so many questions that would help me with my understanding of what's happening with our bodies,our enviroment,our pets and so much more.What bearing do the things from our gut that we find in our stools have on our understanding of M?

[MeaganM]

I am so sorry to hear this Posey! I hope things get better for you soon. You are in my prayers. Hang in there.

The doctor that I am seeing told me that out of the thousands of Lyme patients he has treated and the few M patients, the one thing they all had in common was thick blood. He tested me and sure enough, the test was high. He said that if it was one more number higher than he would have me doing some kind of coagulation injections in the stomach.

[csidegalNH]

Something I recall in past experiences with UTI's, I used to test my urine at home using the test stix instead of running to the Dr when I had symptoms because there were times I had symptoms but then would test neg at Drs office. Anyway while doing the home test, an odd thing would occur depending on if had just consumed a base pH type drink vs. acid based. I don't remember which caused which reaction, but the test would be positive or negative depending on which type of drink I had consumed. Can a false neg or pos be then implied? Is one revealing the bacteria levels vs concealing its presence? Why would pH make the test results vary?

Originally Posted by fritolay66

Posey, so sorry to hear you are yet experiencing this again. You had mentioned you wondered if it had anything to do with biofilm. I sure can't answer that but there are a couple of ways to investigate it through the back door. And by your mentioning biofilm, then you are also wondering about infection causing biofilm?

Infections can cause coagulopathies, most often times they do. What we have been experiencing over the years specifically here, is that testing known infectious agents is dismally inadequate, and more often times than not, our testing comes up negative. Instead of testing for specific infectious disease/bacteria, we can test for antibodies and for toxin identification in the blood. Many bacteria produce antibodies, such as the H antigen, the O antigen, etc., that can be identified and used in diagnosis of suspected infection with other negative results.

Here are a few reasons as to why testing is so inadequate these days. most test for aerobic bacteria, and anaerobic is not. Additionally, many potentially infectious agents, bacteria included may not be testing positive due to the change in the genetics of bacteria. This can be a natural occurence or it can result from man manipulation. For example, the E coli outbreak in Germany last year. Its sufferers not only suffered from E coli, but they found pieces of Bubonic plague DNA in the E Coli. So some sufferers were also demonstrating symptoms of bubonic plague even though bubonic plague was not the original infectious agent, nor were they bitten by the oriental fleas identified as the resevouir of bubonic plague. So the entity Y. pestis was not found specifically, even though parts of the DNA were found within the E coli. These are two very real possibilities as to why we all test negative over and over again. I just wonder if DNA testing is available to us to pursue along with those antigens and toxins.

Blood coagulopathies can also result from genetic mutations we ourselves may harbor. Now a days genetic testing is easy and cheap, but for those needing interpretation, then it becomes more expensive.

Keep fighting Posey.

Frito

[posey]

Frito, they did do some testing to try and find out why my blood clots like this. I don't know which ones.

My PCP said that I could see a Hemotologist and have further testing done but I chose not to because either way I would be taking Coumadin for life.

However, after thinking about I have changed my mind. Even if I will have to take Coumadin for life, they may find something which may be beneficial to my kids and grandkids to know in the future. We all know how fast medicine changes and drugs too. I think it is significant for my kids to know if they would find some reason for my clotting. It may be a factor that could keep them off Coumadin.

I think our tests all turn up negative also because they are testing for specific bacteria and the like. They need to believe us first in order to have a test which is a specific test for M. The pathogen never shows up because they are not testing for it because they can't. Just a thought. They only test for what medicine knows thus far and that's all they can do.

Remember when they called CFS the "Yuppie Flu?" Now they know it is caused by a virus. Look how long that took. Fibromalgia still has no specific test to determine if one has it. I hate to say it but I am 58 yrs. old and when M is recognized and they get to work on figuring it out, I think I will be dead and gone. I could be wrong but we all know how long research takes.

If it ever gets recognized as a disease they need to do research on it, then there is the research for a drug, then the FDA testing on the drug. If I don't find a way to help myself, this will be with me till I die and I already made sure I am going to be creamated. If M is self sufficient I don't want this stuff multiplying on me when I am dead and maybe coming up via the ground to hurt others.

[csidegalNH]

Hi Posey,
Sorry to hear of this ongoing health issue sounds very serious, but I am wondering if you have ever had the problems with lesions not being able to stop bleeding which seems to be the end of the spectrum i have. (Which may be due to low Vit K levels often are associated with Hep C)

Originally Posted by posey

Frito, they did do some testing to try and find out why my blood clots like this. I don't know which ones.

My PCP said that I could see a Hemotologist and have further testing done but I chose not to because either way I would be taking Coumadin for life.

However, after thinking about I have changed my mind. Even if I will have to take Coumadin for life, they may find something which may be beneficial to my kids and grandkids to know in the future. We all know how fast medicine changes and drugs too. I think it is significant for my kids to know if they would find some reason for my clotting. It may be a factor that could keep them off Coumadin.

I think our tests all turn up negative also because they are testing for specific bacteria and the like. They need to believe us first in order to have a test which is a specific test for M. The pathogen never shows up because they are not testing for it because they can't. Just a thought. They only test for what medicine knows thus far and that's all they can do.

Remember when they called CFS the "Yuppie Flu?" Now they know it is caused by a virus. Look how long that took. Fibromalgia still has no specific test to determine if one has it. I hate to say it but I am 58 yrs. old and when M is recognized and they get to work on figuring it out, I think I will be dead and gone. I could be wrong but we all know how long research takes.

If it ever gets recognized as a disease they need to do research on it, then there is the research for a drug, then the FDA testing on the drug. If I don't find a way to help myself, this will be with me till I die and I already made sure I am going to be creamated. If M is self sufficient I don't want this stuff multiplying on me when I am dead and maybe coming up via the ground to hurt others.