sandymbme Posted November 28, 2010 Report Share Posted November 28, 2010 So the last couple of weeks have been some of the worst I have experienced. Fatigue is downright crippling, abdominal pain seems to be bloody unmanageable, and I seem to be shedding pounds like water these days. My appetite is slim to none, nausea is uncontrolled even using phenergen or zofran. My PCP attended a conference on infectious disease, had a eureka moment, and screened me for three viruses. Two of which came back positive,(Human Herpes 6, and Mycoplasma Pneumoniae) and based on the results she is now testing for a fourth (Epstein-Barr). All of these viruses are linked to Chronic Fatigue Syndrome, as well as some other nasties I would rather not contemplate. She (my PCP) is hunting down this specialist via email for treatment guidelines, but told me to expect a minimum of 6 months of antibiotic treatment, as well as anti-virals. Anyone been down this road? I would love some insight/encouragement!Sandy Quote Link to comment Share on other sites More sharing options...
sue1234 Posted November 28, 2010 Report Share Posted November 28, 2010 I think it is wonderful that your doctor thinks of your health issue outside of your 15 minute visit with him!! He is definitely a keeper!!I think that is good that he tested for some different things. I THINK that anyone that has had mono does have the antibodies for the EBV--someone correct me if I am wrong--so that doesn't mean that you are in full swing with that virus. What all other stuff did he test?The only thing that really stood out was, you mentioned that these were all viruses that he tested for, and treatment is antibiotics. Antibiotics are for bacterial infections, not viruses, so I am wondering if he thinks that the viruses could've caused an underlying bacterial infection?? Nothing surprises me with all this POTS-stuff, because in alot of cases it comes on us so mysteriously.Keep us informed on what more info you find out--it is really interesting.One last thing, have you had your cortisol levels checked to make sure you are not "spiraling" down into Addison's?? All of your symptoms sound just like it, but also other things. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted November 28, 2010 Report Share Posted November 28, 2010 Hi, sandy! It's not that you need anything else wrong with you, it's more like finding the source of the cause of everything. Yes I too have a positive HHV6, cytomyegalo, tb skin, and had mono. I agree with her these are probably a factor. You have had a lot of the same type of problems that I have had.There is one more thing since she is open, I would have her look at, because it fits with the viral load. Have her look at all your immunoglobulins. Test the quantitative immunos, the sub IGG panel and if you can get her to, the ig d, e, f. She is looking for a primary immune defeciency. I have one called hypogammaglobluinemia or CVID, common variable immune deficiency. I have now been on several rounds of antibiotics and and am getting ivig immuno replacement. I'm still in the recovery phase and dealing with side effects, but I know we are on the right track now. I too though have wondered if antiviral treatment should be added, or if the rebuilding of my immune system, will now allow my body the abililty to fight these on it's own.There is a lot of info out there on primary immune conditions, you can read through them and see if one fits you. They are also finding that people with chronic fatigue are immune comprimised. So it all seems to be starting to fit together, at least in my mind. Let me know if you want anymore resources on this. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted November 28, 2010 Author Report Share Posted November 28, 2010 Thanks for the quick feedback! As I am sure you all can relate, having a sounding board helps more than I can express! One of my very good friends has CVID, and strongly suggested I be evaluated for it, or other primary immune deficiencies. I will recommend to my PCP the other tests you mentioned arizonagirl. And I think my treatment plan includes anti-virals as well as the long-term antibiotics. I am incredibly blessed that my PCP is always hunting down new angles to treat me from. She tested me for the viruses after attending a conference on infectious disease, and immediately thought of me. She rocks! Quote Link to comment Share on other sites More sharing options...
arizona girl Posted November 28, 2010 Report Share Posted November 28, 2010 Oh I forgot, my neuro is sending me out to see an infectious disease doctor. I didn't realize that they looked at viruses. That is so interesting that is the kind of conference your was at. My thoughts have been too, that maybe I should have been given a combo punch with the antivirals and antibiotics. I do know though that I haven't been given the right course of antibioitics, like your saying with the six months. I remember being on doxycyline for a month once and feeling better on it.Since your doc rocks have you thought about sharing her name with the forum, there might be other members that live in your area or are willing to travel to see someone like her! Quote Link to comment Share on other sites More sharing options...
sandymbme Posted November 28, 2010 Author Report Share Posted November 28, 2010 I have thought about listing her, even though she is just general practice. But she is not currently accepting new patients. Unfortunately, I made too free with her name when she was first starting her practice a couple years ago! It seems to me it can be even harder to find a good PCP than it is to hunt down the specialists we all rely on....Sandy Quote Link to comment Share on other sites More sharing options...
Sarah4444 Posted November 28, 2010 Report Share Posted November 28, 2010 Sorry to hear what a bad time you have been having, sandyshell. Your doctor seems great. Mine is nice, but doesn't search around for what is wrong - he will make referrals, write prescriptions - but I have to tell him the doctor's name and specialty and ask for the referral. I asked him to test me for EBV and I was positive, but that doesn't really tell me much I guess. I suspect that immune issues affect me as well when it comes to POTS, but don't know how to look into this. Is there any research or articles from your doctor's conference or that you have come across re how this could link with POTS that I could read and maybe bring to him to try to start this line of inquiry?And if you don't mind, will you tell us what you find out? Thanks so much. Without this forum I'd probably be dead. Quote Link to comment Share on other sites More sharing options...
juliegee Posted November 29, 2010 Report Share Posted November 29, 2010 Sandy,I'm impressed with your doc too- for thinking outside of the box. My son has had EBV and mycoplasma pneoumonia. Wonder how he'd respond to the other tests your doctor recommended. i do think she's onto something. Mack's doc from Hopkins has him on a year long round of anti-B's (minocycline). We haven;t tried antivirals yet. My immune system is poor. My IgG is around 400 and I have leukopenia (around 3.0 at last testing.) I think having your immune system checked out is a great idea. Don't forget the standard CBC as well. After going through my medical records, my allergist noticed an odd phenomenon. For years my white count was around 10 or higher- with no obvious infection, but lots of pain, allergy symptoms (with no allergies), and weird skin stuff. I went on a low dose of anti-B's (doxycycline) for rosecea & I felt better everywhere. Myy white count started dropping, and dropping.... Wonder what your white count is???AZgirl, what is an ig,e,d & f test? Glad you're doing better. I'll be interested to see what an infectious disease doc recommends for you. Share!Julie Quote Link to comment Share on other sites More sharing options...
comfortzone Posted November 29, 2010 Report Share Posted November 29, 2010 It's crazy all the stuff that they used to think was so harmless and/or a part of growing up ... like roseola (hv6), mono (ebv), mycoplasma (it's out there for sure), varicella Are all being examined intently as to their relationship with chronic fatigue, fibromyalgia and other chronic illness suffered by many...Delighted you have someone thinking intelligently and applying knowledge to real life situations through continued education......someone who isn't afraid or too proud to ask for help from others to tackle a complex problem..........That's huge! Hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
sandymbme Posted December 2, 2010 Author Report Share Posted December 2, 2010 Just got more test results, I tested positive for Epstein Barr virus as well. Still waiting to hear from my Doc what she plans to do with me treatment-wise. I know she was going to consult with an infectious disease specialist first. I am just so darn relieved that after months of knowing something was wrong, but being unable to find a reason, to finally have some definitive results!Sandy Quote Link to comment Share on other sites More sharing options...
juliegee Posted December 2, 2010 Report Share Posted December 2, 2010 Kudos to your doc!!!! Keep us posted on what your treatment will be & how you respond. Quote Link to comment Share on other sites More sharing options...
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