cytomegalo virus and rheumatoid arthritis

[dianne-sunshinecoast]

i havent posted for a while, i showed my rheumatologist the results from australian biologics re borrelia burg, and she gave me doxy 100mg per day , i had to stop them as i gotsevere headaches, lost vision for a while , and was quite disorientated. she sent me for another test to healthscope labs for borrelia . burg and it was negative. i thought that would be the case , as i didnt have any trust in the testing process. i had to see her collegue next visit and she said if your test was positive for borrelia. burg. you would be famous and be in the papers . i cant get to see my regular rheumatologist till march 2012. and she wants to put me on humira as my esr and crp have gone up and also liver enzymes. i thought it may have been from the week i was on doxy and was a bit of a flare.? so i dont really know whats is going to happen now? re the subject- i googled cytomegalovirus as i was told years ago i had it. and i got a very medical article on the subject of cmv and r.a., way too deep for me , but the little i could understand seemed to be saying if you have had cmv in the past, maybe a connection with r.a. ? does anyone know of this? thank you ..kind regards di.

[Maz]

@dianne-sunshinecoast wrote:

i havent posted for a while, i showed my rheumatologist the results from australian biologics re borrelia burg, and she gave me doxy 100mg per day , i had to stop them as i gotsevere headaches, lost vision for a while , and was quite disorientated. she sent me for another test to healthscope labs for borrelia . burg and it was negative. i thought that would be the case , as i didnt have any trust in the testing process. i had to see her collegue next visit and she said if your test was positive for borrelia. burg. you would be famous and be in the papers . i cant get to see my regular rheumatologist till march 2012. and she wants to put me on humira as my esr and crp have gone up and also liver enzymes. i thought it may have been from the week i was on doxy and was a bit of a flare.? so i dont really know whats is going to happen now? re the subject- i googled cytomegalovirus as i was told years ago i had it. and i got a very medical article on the subject of cmv and r.a., way too deep for me , but the little i could understand seemed to be saying if you have had cmv in the past, maybe a connection with r.a. ? does anyone know of this? thank you ..kind regards di.

Di, I was trying to remember what testing you’d had for borrelia and ran a search on your old posts, as I seemed to remember it had been PCR testing. According to the following thread,which I didn’t read in its entirety, you had this particular test run…was it positive?

viewtopic.php?f=1&t=6580&hilit=Di+pcr&start=10

The thing about PCR testing is that it is a test that is considered high for specificity, because it is actually looking for the genetic fingerprint of certain organisms. When the genetic fingerprint is identified for a particular bug, there is really no disputing that it is there. PCR, however, is not often used by LLMDs here in the US, because it has a very low sensitivity rate…meaning that in the case of borreliosis, it is really hard to find borrelia in a single blood sample as this bug drills right out of the blood stream and into the tissues pretty much right from the start and finding it in one small blood sample is like trying to find a needle in a haystack. This is why the western blot is preferred on the whole, as it is a test for host antibodies, and while PCR, if positive, is indisputable, a negative test doesn’t mean it’s not there…just that they couldn’t find it in that one sample. So, if the lab found borrelia’s genetic material in a person’s blood, it’s there all right. So, your rheumy’s collegue should perhaps be questioned on this again.

http://en.wikipedia.org/wiki/Polymerase_chain_reaction

Yes, CMV has been associated with RA, as have a number of other viruses. Interestingly, these have also been found in ticks.If you watch the following video, it described the various secondary infections found in Lyme patients, including CMV:

http://envita.com/sections/disease/lyme/default.aspx

I think LLMDs probably have it right….the reason why Lyme is so controversial is because (a) it’s so hard to find a test that everyone agrees on. Currently, there is no one test that will produce indisputable results in all Lyme patients with high specificity and high sensitivity. And, (b), LLMDs have long recognized that they are not just dealing with one infection, but patients are multiply coinfected…not just with tickborne disease (that takes out immune function), but also latent infections that have been caught during our lifetimes that become reactivated (e.g. strep, helicobacter pylori, various viruses, fungus, etc). Different strains of Lyme can be pretty virulent, so this can be the infection that tips the apple cart, so to speak, but it can also be the bug that continues to take out immunity, making it difficult to treat these other infections. This is why the focus is on this one bug and its various pleomorphic forms (it shape-shifts to avoid abx), but the sickest patients are usually dealing with a number of chronic infections. Some LLMDs are now preferring to call “Lyme” a syndrome, therefore, and its been dubbed “MSIDs”,or “Multiple systemic infectious diseases syndrome.”

I know how hard it is for you to find treatment out in your neck of the woods, Di, and I would not like to throw any spanners in the works and make your journey any more difficult in terms of deciding on what treatment path you must take. There are many people here who are on conventional meds and AP at the same time (with the goal of getting off the other drugs in time) and there is nothing wrong in this. You shouldn’t be suffering while waiting or trying to find a doctor to help you with abx therapy. So please don’t mind me….I just felt it worth harking on about Lyme testing, because I will admit that it fries my gizzards when a doctor tries to pull the wool over a patient’s eyes and ridicules them by saying things, like “You’d be famous in the papers if you had Lyme in Auz.” Lyme is in Australia and just because the medical community had put on blinders, puts their hands over the ears and sings, “lalalalala,” doesn’t mean it’s not there in a much higher prevalence than the “famous few.” This has proven to be the case here in the US – Polly Murray, the mother who alerted the authorities to Lyme in Connecticut in 1975 was one of those “few famous ones” and within a couple of decades, the wider prevalence Lyme and other tickborne infections became known. “Absence of evidence is not evidence of absence” in the scientific world…and just means that science (and egos) may not be advanced enough yet to unequivocally prove something. So, this doc is misguided on two counts…he/she (if your positive Lyme test was a PCR) doesn’t understand PCR testing and doesn’t realize the prevalence of Lyme in Auz, a country that is just waking up to its presence due to a few brave whistle-blowers.

For what its worth, Lyme got into my liver when I first got sick and my liver enzymes (alkaline phosphatase) were sky high prior to treatment. I don’t drink alcohol at all, so it couldn’t be blamed on that. Within one month of being on high dose abx for Lyme, my LFTs normalized. This is not to say this would be the case for you or anyone else, just that elevated liver enzymes can also be a sign of infection in the liver. In fact, a researcher at Stanford Uni, in California, has now discovered that he can reverse Primary Biliary Cirrosis with low dose vanocmycin, a disease that is painfully terminal and can affect even babies. He believes that infections in the gut may be refluxed back up into the liver within bile and has shown that if these patients remain on low dose vanco, they can reverse their liver disease and remain in remission. This is ground-breaking stuff, much as the recent discovery of fusobacterium in Crohn’s and colon cancer has been.

Sorry for the soap box moment! 😆 Di, I hope you can find some answers and I hope that you can also find some relief with whatever treatment you choose and may 2012 bring you much health and happiness!

[dianne-sunshinecoast]

hi maz, thank you for your reply. the first test i had done for borrelia.burg. (australian biologics) earlier in 2011. was a pcr test. the 2nd one in oct 2011 i am pretty sure was not , sorry i did put pcr on the post. ( healthscope labs). it was also collected in a totally different manner . as i live in the country the blood was collected by the nurse in the local park as she was on her way to work an hour away from where i live. not put in cold packs or anything , plus she dropped the test on the ground after she took it . i had spoken to karl mcmanus foundation prior to test and his wife told me she was sure the test would say negative. i do trust the test from ( australian biologics) , i was quite vulnerable at the visit to the rheum. and being unwell and no support you are putty in their hands ( my head being like thick sludge @ the time). maz that is the answer to the first part of your reply , i will have to go back and look at the rest. thanks again . and good health to you and yours in 2012…kind regards ..di.

[dianne-sunshinecoast]

hi maz, sorry i have to do this in stages @ the moment. i just found the test result from the second test through healthscope labs. it seems they sent the sample to another lab in nsw ( i am in qld), another state. it says ( pathology west, nsw government), i know this wont mean much to you being in the u.s., just thought someone in aust. may know of it? anyway on the results it says …infectious diseases….bacterial serology…procedure..lyme antibodies result..not detected. ..comment..negative..no serological evidence of lyme borreliosis. it doesnt seem to be a p.c.r test to me. they also have the date of collection as 18thoct 2011 @ 8am, it was actually collected on the 26th oct2011@ 6.45am .? i will have a look @ the video now maz , thank you very much for your trouble..kind regards ..di.

[Anonymous]

Hey Diane,
Stumbled across your post researching PCR testing. I am waiting for my Lyme testing to come back from Australian Biologics. Their Lyme testing is Borrelia PCR and from what I understand their testing is not just for b. Burg but for the different Australian strains. Maz has done a wonderful job explaining the differences between the two different types of testing. The reaction that you described to your antibiotics sounds to me to be a lot like a herx reaction as they were doing their job flushing the spirochetes out of their hiding places, an unfortunate side effect for many on this path to wellness and recovery. Early back in my road down this slippery slope in 2000-2001 I was diagnosed with Cytomeglavirus CMV, Epstein Barr Virus – EBV, HHV6, Ross River Fever and a positive Rheumatoid Factor (Rheumatoid Arthritis). At the time several of the specialists that I saw were looking for an underlying cause to such a complete immune system crash. Now 12 years later here we are on the Lyme path (or probably should say have discovered that for the last 12 years we have been on the Lyme path and was actually on it for many years before that). I agree completely with Maz, find a LLMD (I know of one in Noosa) that is switched on and get treated….remember that on the otherside of the dark Valley is a mountain top to dance upon. My eyes are fixed on it, I am going through and out. Things are starting to happen, the Govt. are beginning to stand up and pay attention. Health and happiness to you Aussie friend.

[lynnie_sydney]

Hi Robbie and welcome to the Road Back Discussion Forum and thanks for your post! In terms of the doc in Qld, is that the doc that works in tandem with naturopath Dr N McF? Would be interested to hear more, perhaps if you would email me at lyn@roadback.org. Thanks!

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[dianne-sunshinecoast]

Dear robbie, sorry i have just seen your post, yes i do know about the doctor @ noosa , he was the one who kindly ordered the test for me with Australian Biologics. but without going into detail i couldnt go down the path of having treatment with him and his colleague in America. I had to go the way I am going just to stay on top of things. good luck to you on your journey and all the best to you .Love the mountain 🙂 let me know how you get on with your tests and treatment etc. For sure if the way opens up for me to go down that road I will take it . Take care Aussie friend. Kind regards di.

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