Topic: University of New Haven Conference...New Notes!
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
The directions for the tea are two posts down from the tea recipe.
I take Noni juice capsules, plus so many other supplements....who knows what helps what....well, I'm off to LLD appt and hopefully getting an order for the XMRV test.
Highly recommend you read the Burrascano powerpoints on the XMRV and Lyme connection; they are really mind blowing!!!!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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sutherngrl
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Member # 16270
posted
I read the XMRV stuff. It is mind blowing and makes me question the lyme diagnosis. Just what I needed. I am going to mention it to my LLMD Monday.
I guess I can't say the doctors name, but a famous doctor that treats CFS and FM, believes that chronic lyme is actually chronic XMRV virus. This was presented by the famous lyme dr, Dr. B. And that makes it even more mind blowing.
So what are we suppose to believe??? What is really wrong with us?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Oh yea and the FM/CFS dr, Dr C, says that 10% of his patients were previously diagnosed with LD. (I guess they questioned their diagnosis). Anyway, he says 80% of them test positive for XMRV.
Wow, pretty good percentage!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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quote:Originally posted by sutherngrl: I guess I can't say the doctors name, but a famous doctor that treats CFS and FM, believes that chronic lyme is actually chronic XMRV virus. This was presented by the famous lyme dr, Dr. B. And that makes it even more mind blowing.
I think we have to be careful how we perceive this message. I listened carefully to Dr. B's presentation. At no point did he say XMRV is chronic lyme; he was just making a point about the very positive correlation between the two. It's also the basis for his research focusing on XMRV, which will include 100 XMRV patients, 200 controls, etc.
Just my 2 cents. But this new retrovirus is concerning.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
In case I was misunderstood.......
I am going by what I read in the "slides" that were presented, from Dr C's research. I did not hear the presentation by Dr B; but Dr C is the one that says chronic lyme is actually really chronic XMRV. Dr B must have just quoted Dr C OR just put up the slide that stated this from Dr C's research.
Either way, it has to make you think.
To me it doesn't matter if its chronic lyme, chronic XMRV or both. You can't treat a virus with an antibiotic. So I don't care if its a separate illness or a co-infection or lyme, the XMRV has me concerned, now more than ever.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Very interesting! I had CFS over 20 years ago, got well for a bit & then got Fibro which is now Lyme (by clinical diagnosis)... Don't remember any tick bites but I did get some nasty virus type flus prior on both occasions of becoming ill.
I didn't have Epstein Barr Virus & none of my tests were very conclusive for much of anything. The thing I really find interesting is that I just came across some info that the CFS doctor (Dr. C) has been recommending artemesia!
None of the abx I've ever done have helped me much but I am herxing since I started artemesia. Just some interesting links for me.
The latest thoughts from my doctor are that I have babesia & some people don't have typical babs symptoms... Go figure? I mentioned XMRV & he didn't know anything about that.
I really need a new doctor but there aren't many LLMDs or smart doctors around here. I'd like to see Dr. C (CFS guy) but he's really expensive!
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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posted
With lyme and coinfections when a person develops autoimmune disease can the autoimmune disease ever be reversed to normal?
Posts: 140 | From Illinois | Registered: Jul 2009
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
My particular autoimmune disease is uncurable, but I don't know about them all. I have small fiber neuropathy, it is degenerative and there is no cure. Sucks for me. But IVIG, if I can tolerate when I start it again, should keep me stable and even help.
I saw my LLD today. We brought in (I think we CAN say his name because he is not a treating doctor) Dr. Burrascano's powerpoint presentation on XMRV as well as a test requisition for XMRV. My LLD was unable to make the UNH conference but had already procured the CD, and was extremely excited about the XMRV stuff (interested, intrigued.)
He anxiously took the printouts, rapidly signed my XMRV test requisition, and copied it to order test kits for his patients. He thinks it's really something.
I can't comment, it's over my head. My husband was very intrigued by it. I guess the important thing is, we need to find out if we need to be on antiretrovirals. It could be a missing piece.
Also, I feel like a real dodo head. I already knew my Lyme load was way down and my primary issues were Bart and small fiber neuropathy, yet for some reason I became depressed and hopeless over that damned slide where the bleach didn't kill the spirochetes. Furthermore I left feeling hopeless at the lack of answers to cure Lyme.
Am I braindead? Or maybe I was feeling collective depression for everyone? Lyme isn't even my main issue. I have BEATEN Lyme to a large extent, this I know, but can't seem to retain that fact. My CD 57 has gone from 32 to 120 in a little over a year. My Western Blot (IGENEX) has steadily improved also. Less and less bands every time!
Today, I got my first ever NEGATIVE IGENEX Western Blot. I know that is the opposite of what most people are looking for, but after several positives, it was a beautiful sight. My awesome Lyme doc who rocks my world was SO excited.
He thinks I have really beaten Lyme down a LOT! This is amazing; I've had it for over 30 years, and we all know it is so much harder to beat with co infections. Even though I feel progressively worse each year, it is NOT because of Lyme. So that is very good news. I think I have a hole in my brain that I can't retain this fact. Oh yeah, the ketes must have drilled a few there.
So the bad news is my Bart titer is off the charts!!! It keeps going up, up, up over the past two years. And this is on Quest!!! My Lyme doc was amazed at how high it is (on Quest, no less. He had to keep double checking that.) But that was before I started Rifampin (AKA back alley beating in a capsule.)
The good news is, as he said, we definitely know what we are dealing with. Not Lyme so much anymore, but I still have a couple bands, and we are going to keep treating it. I killed those suckers with all that aggressive treatment just like Six Goofy Kids did (sans 880.)
But I have a nasty case of serious Bartonella that is going to take a LONG time to treat. In six weeks, I've seen about a 25% improvement in my fatigue after being "comatose" for 3 years. I'm having lots of NEW symptoms I'm not real fond of, that are rendering me still bedbound, but it's the Bart coming out and I'm confident they will resolve at some point. This Bart is some seriously nasty crap.
He wants to keep me on just Rifampin; he said it is not necesary to add another med...I hope that's correct. I've read here that another med should be added, but he said not necessarily. Frankly the Rifampin is doing such a number on me I can't really conceive of adding any more torture.
I am going to restart the IVIG for the small fiber neuropathy....SOON!!! I meet with the head of the Cancer Center where I was getting it FINALLY on Monday and there is no reason to think he will deny me. Dr. W has my new orders all set and ready to go. I need to make peace with the nurses there who are less than fond of me to say the least, since I could be there two days every other week for the next couple years.
Now my son needs IVIG too but he won't be getting it there; his pediatrician will have to set it up where she is on staff, and with any luck then he can get it at home. That will never be an option for me due to my past reactions.
My thyroid is a mess, starting me on Cytomel in addition to Levothyroxine....a new sleep med to try, Rozerem...Fiorocet for pain (killer Bart headaches)....I have extremely high inflammation (I am not well versed in what that means). My sed rate is very high and Cardio CRP is very high. He put me on some Nutramedix supplement OspC or something like that for inflammation.
Going for SPECT, MRI with contrast, sleep study, tilt table test, going to someone who does bioidentical hormones, echocardiogram on Monday, Pulmonary Function Test on Monday, more bloodwork....low Vitamin D....oh and so much more joy to behold.
Missed meeting my new Lymenet friend by ten minutes. This all probably belongs in a different thread... sorry for my ramblings. I'll make it up to you all with some real good UNH conference postings, promise!!!
So now I am happy and hopeful, and no longer feeling despair, but most of all I am hopeful for everyone because if I can beat Lyme, with all the crap I have going on, by God anyone can!!!
So now I have to register my one complaint....a five hour ride in a Honda CRV with 170,00 miles, with totally trashed shocks, struts, bushings, worn out flattened seats, and the heater stuck on in 70 degree weather makes for an extremely painful ride for two Lymies. By the time I got home I couldnt' hit the pain meds fast enough. Oh, the agony.....bouncing, muscles tensed, tossed about for five hours....pure torture.
Meds and sleep tomorrow. Night all. I'll try to post you up some stuff from the conference tomorrow instead of just rambling on....promise!
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
Tracy, you are a trooper - and thx for all the reports -
Helenah - I think we have to treat to feel better. The best we can get, I think, is symptoms in remission.
You could read through some of the success stories listed at the top of General Support to get a sense of the variety of treatments people try. We're all different when it comes to what works.
Posts: 13171 | From San Francisco | Registered: May 2006
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