friday7 Posted February 28, 2011 Report Share Posted February 28, 2011 I know this isn't a CFS forum but I was first diagnosed with CFS and then POTS and since the two share so many symptoms I'm never sure whether I have both , whether the POTS is actually what I have and not CFS or whether CFS is just undiagnosed POTS ..it gets very confusing. SO I read up on what's going on in CFS sometimes because anything they found to help that could also help people with POTS.ANyway, I often thought I probably have a low grade infection in my system, or virus that kind of flies under the radar and once in a while when it gets bad enough the doctors see it, I get treated, it gets better but doens't completely go away.It just stays and make me feel lousy on and off until it gets bad enough and they treat it again. I saw a doctor once who actually said this to me which made me feel a little better to know that a medical professional was thinking the same way I was . Unfortunately I can't see her anymore but that's besides the point.ANyway it seems this article below is talking about something similar to this and I was just wondering if anyone knows if there has been any further studies done since this is dated 1998:http://researchnews.osu.edu/archive/cfs.htmSorry if my words are a little unclear but I have really heavy brain fog today and ,well It's just one of those days when you're not sure if you're explaining things right so excuse me if i"m not clear.ALso has anyone else had a similar experience with frequent infections, viruses or a lowered immune system..like do you get colds easily and then take forever to get rid of them. Or does it turn into an infection after having a cold or a while. I almost always get a bacterial infection following a cold since I have the colds for so long.Is there anything you do to boost your immune system? Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted February 28, 2011 Report Share Posted February 28, 2011 Yes, that is from 1998. There are several viruses that are often involved. You can test for Epstein Barr. There are new things finally happening. It has been painfully slow and many docs didn't understand or want to understand what CFS was. Very sad. I use supplements for my POTS and CFS and supplements for my immune system to fight the Epstein Barr Virus. Most people have this virus, as in Mono when you are ill as a kid. Some of us to not fight it and it has high levels.There is a really good forum for CFS. Lots of info there. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 1, 2011 Report Share Posted March 1, 2011 Hi Friday-It may be old news- but relatively new to me too The overlap between dysautonomia and CFS is irrefutable. I often wonder if it is the same illness with a different name as well. I have recently learned that I test high for cytomagalovirus, one of the viruses implicated... I recently stumbled upon research by Dr. Martin Lerner, a top CFS doc in MI. He has found that If these latent viruses remain untreated that they will ultimately affect the heart, causing distolic dysfunction, etc....that I've recently been DXed with My problem has been finding a doctor that will take this info seriously. The answer seems to be strong doses of anti-virals for very long periods, like 3 years. Here's a link to Dr. Lerner's research: http://www.treatmentcenterforcfs.com/FAQ/index.htmlThe forums at Phoenix Rising (CFS Support) have lots of great info about this. Have you had a viral panel done to see if you test high for Epstein Barr or cytomegalovirus? Keep researching & share what you learn. We could all benefit from your input.Hugs-Julie Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 1, 2011 Report Share Posted March 1, 2011 Yes, Phoniex Rising is the best place for information. Great chats too, we help each other there and on the forums. Quote Link to comment Share on other sites More sharing options...
gdomaracki Posted March 1, 2011 Report Share Posted March 1, 2011 I too have been told I have cfs and pots but we cant really figure out which came first. Many of the symptoms overlap and I too have wondered if they arent the same thing. Ive had mono before as a child and Im wondering if I should try getting checked for the Epstein Barr Virus. I have a weakened immune system and whenever I catch something, its always sooo much more severe and lasts forever. Its definately not a fun time. Do you get checked for EBV by your primary physician or a specialist? Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 1, 2011 Report Share Posted March 1, 2011 My Integrative doctor does the testing. Very easy to order, just like B12 and vit. D, etc. She is a family doc. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 1, 2011 Report Share Posted March 1, 2011 I got checked by a rhematologist, but any doc can order the test. I meant to add that I also have an impaired immune system- low IgG, hypogammaglobulinemia and intermittent leukopenia. Quote Link to comment Share on other sites More sharing options...
friday7 Posted March 2, 2011 Author Report Share Posted March 2, 2011 Yes, that is from 1998. There are several viruses that are often involved. You can test for Epstein Barr. There are new things finally happening. It has been painfully slow and many docs didn't understand or want to understand what CFS was. Very sad. I use supplements for my POTS and CFS and supplements for my immune system to fight the Epstein Barr Virus. Most people have this virus, as in Mono when you are ill as a kid. Some of us to not fight it and it has high levels.There is a really good forum for CFS. Lots of info there.What forum is that? I think I was tested for Epstein Barr but that was about ten years ago. I'm not even sure if I was tested..I just know they tested for just about everything to rule out stuff and make the diagnosis of CFS.Is that something that is commonly tested? I mean I have Medicaid and they give you such a hard time when paying for anything, even more so lately ..plus the doctors don't like to do anything out of the norm.I'm just wondering if this is something that is commonly tested for when one is suspected of having CFs and is there anyplace "offical" that states that this is something that should be done for a CFS patient. If it's something even a little out of the norm I'm going to have to have something to back me up.Hi Friday-It may be old news- but relatively new to me too The overlap between dysautonomia and CFS is irrefutable. I often wonder if it is the same illness with a different name as well. I have recently learned that I test high for cytomagalovirus, one of the viruses implicated... I recently stumbled upon research by Dr. Martin Lerner, a top CFS doc in MI. He has found that If these latent viruses remain untreated that they will ultimately affect the heart, causing distolic dysfunction, etc....that I've recently been DXed with My problem has been finding a doctor that will take this info seriously. The answer seems to be strong doses of anti-virals for very long periods, like 3 years. Here's a link to Dr. Lerner's research: http://www.treatmentcenterforcfs.com/FAQ/index.htmlThe forums at Phoenix Rising (CFS Support) have lots of great info about this. Have you had a viral panel done to see if you test high for Epstein Barr or cytomegalovirus? Keep researching & share what you learn. We could all benefit from your input.Hugs-JulieThanks for the link..Yes the hard part is getting doctors to take it seriously or just be interested in putting a little extra work into helping a patient. I know it's hard for them with all of the people they see but it would help so much if one of them would take the time to actually read the info I leave with them... Or come here at look at this site.I do know of a doctor who would definitely listen to this info but I have to pay out of pocket to see her and dont' have the money right now..But I am going to discuss it with her when I do get to see her.But anyway,I may have had a viral panel and been tested for Epstein Barr, but it's been so long since i was first diagnosed with CFS that I don't even remember what they tested. I am set for an appointment with the GP and supposed to have some tests run so I'll ask her about adding these.The fact that Dr. Lerner's research mentions weakening of the heart muscle is kind of scary. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 2, 2011 Report Share Posted March 2, 2011 Yeah, I know. The heart part is scary. I'm only 48 and have been told I have these changes I have no other risk factors- I'm thin, no diabetes, and am able to exercise...yet I'm in the 1st stage of heart failure???Best of Luck-Julie Quote Link to comment Share on other sites More sharing options...
targs66 Posted March 2, 2011 Report Share Posted March 2, 2011 I think there's a definite link between my neurally mediated hypotension and my CFS - I've been told I've got CFS for over 20 years, and it just kept getting progressively worse - BUT I could still work. It was an enormous struggle (I knew something was seriously wrong when I had to lie down on the bathroom floor every morning b/4 I could manage to get in the shower) -- but I wasn't dizzy. This dizziness has demolished my life. I think the CFS continued to wreak its damage over the years, leading ultimately to something causing the dizziness.Sorry, this isn't very clear, but I'm not great today. Quote Link to comment Share on other sites More sharing options...
Sallysblooms Posted March 2, 2011 Report Share Posted March 2, 2011 Here is the link for Phoniex Rising, very good place to learn. http://forums.aboutmecfs.org/forum.phpYes, doctors should know to test for Epstein Barr. Just a simple blood test. They should test for many things including Vit. D, Vit B12 etc. There are other viruses that could be a part also but not commonly tested. Quote Link to comment Share on other sites More sharing options...
juliegee Posted March 2, 2011 Report Share Posted March 2, 2011 Just wanted to add that cytomegalovirus is another one that's implicated with CFS. Julie Quote Link to comment Share on other sites More sharing options...
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