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» LymeNet Flash » Questions and Discussion » Medical Questions » Dr. Jamie Deckoff-Jones and Dr. B on XMRV and chronic lyme disease

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Author Topic: Dr. Jamie Deckoff-Jones and Dr. B on XMRV and chronic lyme disease
m0joey
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http://treatingxmrv.blogspot.com/2010/10/more-lyme-disease.html

[ 10-18-2010, 04:53 PM: Message edited by: m0joey ]

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jarjar
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Sounds to me Dr. B who is probably the most respected and closely followed Lyme Dr. is staying on top of XMRV but it is still early in the game of treating the virus.

Below copied and pasted from lymenet.

Hello all from Dr. B.

I just returned from the first official scientific symposium of the Whittemore-Peterson Institute on the topic of XMRV.

We formed a working group to be in constant touch and we plan to meet regularly because advances are coming so rapidly.

Big news that everyone should know and adopt is that we have proposed a name change for the virus.

This virus is a human, not mouse virus, and it is the first and so far only gamma-retrovirus known to infect people. Also, it is clearly not an "endogenous" retrovirus (one that is present in all genomes due to ancient infection).

Because of all of this, and because of the desire to begin on the right track, the new name of the virus is HGRV- Human Gamma Retro Virus. The illness caused by this infection is named HGRAD- Human Gamma Retrovirus Associated Disease.

We plan to announce this at the upcoming NIH retroviral conference this September.

Definitely stay tuned- the volume of new and important information about this virus and its disease associations is increasing rapidly and in my opinion should be a concern to every patient with chronic neuro-immune diseases, including those with chronic Lyme.

Joseph J. Burrascano Jr. M.D.
Water Mill, NY, USA

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m0joey
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More on XMRV and Lyme from Dr. B's presentation at the ILADS conference:

http://cfspatientadvocate.blogspot.com/2010/10/ilads-conference-2010-dr-joseph-brewer.html

[ 10-18-2010, 04:54 PM: Message edited by: m0joey ]

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TerryK
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Thanks for posting Joey!

I'm interested in the message of Dr. Deckoff but very turned off by her discussion of ILADS. Her innuendo that LLMD's don't treat with anti-virals because it is not in their financial best interest is down right slanderous and wrong.

From reading her blog, it seems she is not aware of all the issues involved in lyme treatment. When discussing her husband's treatment she seems to be unaware that part of the problem could be related to biotoxins which could fully explain his situation.

I noticed that even when Dr. Deckoff was practicing medicine and was aware of CFS, lyme etc., she was not putting herself out there to practice what she preaches.

It's easy to be critical when you are not the one having to treat patients and keep up with all the new information. My ILADS LLMD keeps up with tons of new info and there has been a lot over the past few years. ILADS itself walks a fine line in order to remain credible with main stream medicine.

If she wants to reach lyme patients, best not to make fodder of the only doctors who are willing to help us. Yes, they are not perfect but then it is clear that she does not understand some of the issues that she should.

Terry
I'm not a doctor

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seibertneurolyme
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Terry,

I have to agree. I have a hard time learning anything from her posts because the negativity is so hard to filter out.

And expecting one doc to know everything about every possible issue is not very realistic.

Even if one does have viral issues including XMRV there is no way to know definitively which infection is driving the illness. Our bodies are actually pretty amazing in what they can put up with and keep functioning at a normal level.

Hubby's current LLMD believes in treating the most active infection the hardest -- but sometimes the only way to know which infection that is is by trial and error.

Bea Seibert

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lou
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Right, Terry. I am flabbergasted that she would be criticizing these docs. It is a real turn-off. Even Dr. Cheney says not to start treating with anti-retrovirals based on guesses about the role of this virus in someone's illness. Irresponsible, is what it is.
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dogmom2
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I love reading this: "advances are coming so rapidly" from dr B's letter.
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Michael_Venice
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I have to agree with Terry here, completely.

She writes an open letter, and seems quite bitter that every Lyme doctor has not implemented her treatment ideas across the board.

I mean, most doctors seem to consider it 'early' in even understanding Lyme and it's complexities. With XMRV, we're talking about something whose possible significance was discovered...what, a year ago?

And it's not clear at all which treatments are effective, going to be effective, etc.

I'm no expert, but there's only a few retroviruses...and viral treatment in general is quite difficult.

It very well may be that this is a major player...but again, as Terry says...her tone and approach is extremely off-putting. And it's a shame, because her information could be good....if it wasn't presented in such a combative way.

Every single one of us who is chronically ill are frustrated, angry, sad, etc....about our situation and the damned-shame aspects of it. But this doctor, sick and trying as she is, is getting in her own way of presenting her information in a more positive way. (and by the way, I have a high tolerance for bitterness and recrimination).


-M

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nomoremuscles
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I think she is very smart and makes many good points about ILADS doctors that few Lymies are willing to concede.

She also makes the point that a patient, displaying the exact same symptoms, can go to an LLMD and end up with abx, or to a CFS doc and end up with anti-virals, or to a neuro and end up on one of a laundry list of MS drugs. And each of these docs will have their own markers and tests to back up their diagnosis. What does that tell us about the state of the science in terms of these diseases?

I do think, however, that since she hit on XMRV she has been too quick to dismiss the many possible reasons for treatment failure using standard ILADS abx protocols. There are just too many variables, from cysts to co-infections to biofilms etc., to suggest that treatment failure with abx is evidence that the ILADS POV is wrong. At this time there is no way to know that. In this regard I think she goes off a bit halfcocked. This, I believe, is where she falls short.

But overall, I think what she is doing is important. We need to learn as much as we can about XMRV, and we need early pioneers to let us know the benefits and pitfalls of trx. Even though I wouldn't use the meds she is using, I am grateful for this information.

There is a pretty good chance that XMRV may be the missing link, or at least one of them, with Lymies who don't get well. So I think a bit of latitude should be given when a bright physician is willing to blog on her opinions and trx experiences to benefit the rest of us.

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missing
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It is much more helpful, and credible if one leaves their emotions out of it.

That is one thing that impresses me the most about the LLMD's and ILADS.

Very informative and very professional.

I have wondered about XMRV and I was planning on asking my LLMD about it. I am very confident that I am getting the best treatment. My LLMD always listens to my thoughts and concerns. I have never been treated better in my entire life. I, at this point, don't even care who is right or who is wrong, at least I have one doctor who CARES.

I don't think this is a easy way for them to make money. A lot of LLMD's lose their practise's, get harrassed, and could have much more lucrative careers than just being a LLMD.

I consider them hero's and thank God every day for them.

[ 10-19-2010, 11:30 AM: Message edited by: sixgoofykids ]

--------------------
I am not a doctor. I have no clue.

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kday
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I have said it before she was so cynical. Her tone bothers me.

I am open-minded to possibly having XMRV. That's why I see a CFS doctor.

However, I think it's premature, and possibly dangerous to treat XMRV with an ARV cocktail before research is done. The drugs can be very toxic, and jumping on the ARV bandwagon at this point may not be a wise idea.

I think her pro ARV cocktails stance is dangerous, and irresponsible. ARV drugs are not drugs to play with. I'm sure there are patients already ordering their cocktails from India because of her blog. Not smart in my opinion.

There is a lot we don't understand about XMRV, and hopefully some good answers will come soon.

I am not one that generally trusts our medical establishment. If ARVs were generally recognized as safe, my opinion would be different.

That being said, I don't really agree with ILADS or the IDSA, but I'd rather see an open-minded ILADS doctor. I was injured by quinolones, and I believe in careful use of antibiotics.

Spirochetes have been observed in and around my erythrocytes with dark field microscopy. It's no longer obvious that I have an infection by looking at my blood, but if you haven't seen it yourself, it's amazing how many red blood cells (and even white blood cells!) Lyme and co-infections can hijack. If I have XMRV, I believe the virus was latent and triggered by infection. I think many XMRV infections may be viral triggered, and perhaps Dr. Jamie Deckoff-Jones fits in that category.

If one has Lyme and co-infections with XMRV, perhaps proper antibiotic treatment (probably long term) can make XMRV go back into dormancy like it was before.

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Hoosiers51
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While I respect Dr. D-J for putting it all out there, I feel like there is a lot of irony in that blog. What she is so "gung ho" about is less proven than what LLMD's are doing. That is the one thing I can't get past when reading the blog.....wondering how she doesn't realize how ironic that whole dichotomy is that she's setting up (chronic Lyme treatment vs. XMRV treatment). The irony is so obvious, that I have to question how "with it" she is, if she hasn't noticed it yet.

I think if she at least addressed this irony in the blog (or maybe she has, I just didn't see it?), or if she showed more of a removed, scientific "healthy skepticism" about what she was doing, I'd be able to process her perspective better.

That said, I'm glad she is looking into XMRV, because someone has to.

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LymeMECFSMCS
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I think Dr. Deckoff-Jones is right that LLMDs should be testing for XMRV as they do many other infections. If it's positive, they should discuss with their patients the treatments out there (antiretrovirals). Some antibiotics have similar side effects to antiretrovirals, such as mitochondrial toxicity.

So I think she's right on the point that patients should have the option, and ART drugs should not be kept from patients any more than IV Ceftriaxone.

The proof of these treatments, just like the proof of long-term antibiotics, will be a positive clinical response.

However, I don't agree with many of her other points, and I think Dr. B. is clearly indicating his openness to XMRV -- esp. by inviting XMRV docs to ILADS. I don't sense some great resistance on the part of LLMDs to accept XMRV.

I think the tone of the entry had a lot to do with the press discouraging the use of ART drugs for XMRV when Deckoff-Jones feels its urgent patients have the right to choose.

Another Dr. B. who presented at the conference on XMRV and CFS said that a third of his patients treating with ART drugs got much better, and another third got better slowly over time. For patients who typically don't get better, this is significant, and it makes a strong argument for why patients should at least have the personal option of taking these drugs. As everyone with TBDs knows, sometimes there is no time to wait for studies: sometimes it is life or death.

I think it's important to look at these facts rather than be put off by the tone of the piece, because a lot of people could find the missing link to recovery is antiretroviral treatment and we can't shut that door: however, we also can't shut the door to the antibiotic treatments that are working, unless patients actually do recover on antiretroviral treatments alone. I think Dr. Deckoff-Jones makes a mistake in treating this as an either-or proposition.

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lou
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Well, I would not want her as a doctor. And until she starts putting her career on the line by treating people with unapproved drugs for a viral infection that may or may not have good tests, then she is not a reliable witness. This is what she wants other doctors to do!!! If she wants to experiment and report on it, that is one thing. But who is going to listen to someone who gets so many other things wrong and impugns motives. Obnoxious.
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Jamie Deckoff-Jones MD
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I knew that my post would ruffle some feathers. It was actually moderate compared to the rage that I was feeling when I wrote it. The ILADS guidelines almost killed me. Damaged my family on so many levels. I realize that there are many well intentioned doctors trying to help Lyme patients, but my mail continually reflects the damage still being done by this particular failed experiment.

I was an ILADS member for 7 years. My comments were addressed to the powers that be within that organization, former colleagues and my own doctors. They know who they are. I tried to work from within the organization before going public with my opinions, to no avail.

Of course I am aware of the irony that after almost losing my life to the last unproven protocol that I bought into, that I am trying another. I hope I have covered that adequately on the blog. There is, for some, an uncomfortable parallel to the "herx" that can occur with antibiotics. However, the difference this time, besides the fact that the science finally made some sense, was that I was able to tell in fairly short order that the drugs were moving the disease in a postive direction. With Lyme treatment I was told to suspend disbelief, for years, even though we were sicker, while a carrot was held out that if we just persisted there was a good chance that we would get better. 80% I was told. It was a lie. A lie that is being perpetuated by ILADS.

I don't remember who said it, or the exact wording, but "Insanity is when you do what you've always done and expect a different outcome."

In the CFS community my message is seen as one of hope, because they are told that they have an incurable disease. In the Lyme community, the same message is seen as taking away hope, as cure is held out as possible if only enough antibiotics or the right combination of antibiotics are taken. There are people who get Lyme Disease, even missed Lyme Disease, who get treated and are cured. There are others that stay well if maintained on an oral antibiotic, for reasons we don't understand. But most people who don't respond to antibiotics, fairly quickly, don't do well with more, IMO.

I have never said that anyone else should take antiretrovirals. Only that CFS/Lyme patients should have the option. Certainly everybody should have the option of being tested. Knowing really does inform decision making.

We are in the 8th month of treatment and have no regrets whatsoever. We are much improved. I am doing everything in my power to return to practice and it looks very hopeful. I think everyone reading this knows how unlikely that was without meaningful treatment, after 6 years of disability and 4 years of being nearly bed/couchbound that included two near-death experiences.

You are in the unfortunate positions of needing to figure it out for yourselves. If you have an intelligent, compassionate physician, try to educate them. I am happy to communicate with any physician willing to think beyond the Lyme box. TBDs are obviously a piece of the puzzle. Bb may be a copathogen of X/P.

I don't read the forums regularly anymore. If anyone would like to be in touch, my email is:
[email protected]

All my best,
Jamie Deckoff-Jones

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baileypup
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I hear the angry tone in her voice that you all site.

I think all sides of these issues have their place. Unfortunately, no one has all the answers. The fact that ILADS is open to XMRV as a potential contributor to lyme is significant. I honestly don't understand the argument. XMRV may be the cause of illness, or it may be a contributor; it has yet to be proven.

There are so many similarities between lyme and CFS. We know that the underlying cause is immune dysfunction. We just don't know the cause, and it may be different in each individual. Just because lyme wasn't the main contributor to Dr. D-Jones's illness, doesn't mean it isn't with someone else, and vice-versa.

XMRV, and the big-name hospitals behind the research, have validated CFS. Finding a CFS doctor is no different then finding an LLMD. There are very few who understand or specialize in chronic immune dysfunction. Being a part of the lyme maze, is no different than what I experienced with CFS.

I don't think any one of these doctors; LLMD or XMRV, have all the answers. Gratefully, there are many working to seek out the solution. I don't think there is any one cause of our illnesses. It's a multi-faceted, complex disease, which requires a doctor to be open to all contributing agents. It is irresponsible for an LLMD to overlook viral components to illness, just as it is for CFS doctors to discount lyme and co-infectious agents.

We are on the sidelines observing, as we move closer to an answer.

[ 10-19-2010, 11:33 AM: Message edited by: sixgoofykids ]

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lou
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It is ridiculous to criticize doctors for not knowing what no one knows, and for failing to jump on a bandwagon that still has a lot of issues. This is still not accepted as the cause of CFS by the establishment. So, having risked their careers by treating a bacterial infection with antibiotics, they should now, with a lot less backup, start prescribing anti-retrovirals? Geez. And the big problem has been agreeing on a test that everyone can use to find it. Why then demand testing?

I have seen no reluctance on the part of lyme doctors to look for other causes of symptoms. We now know about ehrlichia, babesia, bartonella, and others are suspected. This is inspite of establishment pushback.

She owes some people an apology.

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Jamie Deckoff-Jones MD
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Please read the links in this post, especially the one about Dr. B's talk. He has treated AIDS, CFS and Lyme for 25 years.

http://treatingxmrv.blogspot.com/2010/10/coverage-of-weekends-events-by-cfs.html

I believe that X/P are the generals, Bb a lieutenant. My guess, and it is a guess at this point, is that Lyme Disease will be easy to treat when we figure out how to control the underlying retroviral infection.

Sincerely,
Jamie Deckoff-Jones

** edited to remove Lyme practitioner's name **

[ 10-20-2010, 10:48 AM: Message edited by: sixgoofykids ]

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Jamie Deckoff-Jones MD
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Everyone is welcome to be patient and polite. But I think it's long past time for action. We need help. Real help. Not just sympathy. Anyone who wants to be satisfied with good intentions can be, but we need meaningful treatment. The disbelief has been tremendously damaging to all of us, but achieving credibility isn't enough. It took 15 years with HIV. I don't know about any of you, but I don't have even 5 years, let alone decades. I have a sick daughter. I have a sick husband who can still function and a clinically "healthy" 16 year old son, with subtle signs of the virus, who need never get sick.

Women are writing to me who are pregnant and X+, wanting to know what to do. Clinical trials of antiretrovirals aren't even planned yet.

We need to take a hard look at how the HIV community achieved what they did. And they had to start from scratch.

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

http://actupny.org/

Sincerely,
Jamie Deckoff-Jones

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lou
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Some of us who have chronic lyme do not have any significant fatigue problems. One would suppose that these people do not have the XMRV connection. So, then there must be other reasons for continuing infection despite treatment.

Not everyone has ehrlichia, babesia, or bartonella. Not everyone with tickborne diseases is going to have XMRV.

The efforts of people who are convinced they might have XMRV should be concentrated on getting the establishment to move forward with this, not to attack an already beleagured small group of doctors.

If you move forward in a more positive way, people will suppport and help you. Drop the negativity and unfair criticism. The CFS community needs to lead the way on this, not the lyme community. There will be an overlap that will help some of us. All we have to do is keep our ears open, and I see that happening.

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sixgoofykids
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quote:
Originally posted by lou:

Not everyone has ehrlichia, babesia, or bartonella. Not everyone is going to have XMRV.

I believe this, too. I got well with the German Bionic 880 treatment. My biggest issue seemed to be Lyme, and the underlying concern for me (I DO believe you have to have had an underlying issue that enabled you to get so sick with Lyme) seemed to be KPU.

However, mOjoey did the same things I did and did not get better. Obviously he has a different combination of variables.

--------------------
sixgoofykids.blogspot.com

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kday
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quote:
Originally posted by Jamie Deckoff-Jones MD:
I believe that X/P are the generals, Bb a lieutenant. My guess, and it is a guess at this point, is that Lyme Disease will be easy to treat when we figure out how to control the underlying retroviral infection.

Sincerely,
Jamie Deckoff-Jones

I think your hypothesis has weight. I have written about the same thing on my blog.

I was actually living in Lake Tahoe when I got ill, and have significant post-exertional fatigue. I really think XMRV may be a major factor in my illness. I haven't tested for it directly yet as I am waiting for more research to come and also waiting for the assays to be more developed.

I frequently visit both Lyme and CFS forums.

It's easy to become cynical when you aren't getting better, and I find that days that I am feeling better, I have the energy to get angry; real angry.

I got a lot worse on Cipro (panic attacks all the time), which I realized later was an ADR. It was very scary, and the worst part was that I wasn't taken seriously. I suffered terribly for 9 months taking pretty much nothing. I still think there may be some damage, but it's too hard to know for sure in my situation.

After seeing the Lyme and co taking over my erythrocytes and most of my white blood cells, I realized I had to do something about it.

Scared of antibiotics, I later saw an N.D. and she wanted me to start colloidal silver. I was skeptical about it since it is a heavy metal, and was more skeptical about the efficacy.

It turned out that I couldn't even handle a quarter teaspoon at first. The low dose actually put me in tachycardia/SVT and a 99.5 degree fever that would come and go for a couple weeks. Now I can take many teaspoons without a problem.

However, while I continue to take Colloidal Silver and a few days of Rocephin a week, I remain ill. Not as ill as I used to be, but still enough to be considered disabled and not being able to drive a car. I am 24, and it's definitely not a quality life.

I am a poor methylator, and correcting that helps tremendously, and even helps my chest pain, cognition, and excitotoxicity a lot. I can't live without my B12 shots.

I don't mean to blast you as a person, but the negative tone and blame of some of your posts definitely turns me off. Perhaps I am not the audience you are looking for. However, it seems like that kind of tone is what generally sells (not saying you are selling anything!). Just look at all the news stations (CNN, Fox News, MSNBC, etc).

I am the rare person that prefers the boring stuff like NPR and C-SPAN. [Smile]

Best of luck on your treatment journey and I hope you and your family gets well.

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hadlyme
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I definitly will look into this with my llmd.

We all have had such a journey and new things DO need to be looked into by professionals and ourselves.

Thank you for all your work that you have done and are doing Dr. Jamie Deckoff-Jones.

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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m0joey
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I hate to swoop in here when I don't have my maximum wits about me, but I don't want to see this get out of control. Please cut me some slack, as I may re-read this later and realize I said things I didn't mean to say.

In reading this thread, I'm finding that most people are taking more offense at the tone being used than the content being presented. The main content that seems to be grinding gears is calling out ILADS doctors for not adopting consideration and treatment of XMRV more readily.

Dr. Cheney and both Dr. B's mentioned in this thread are either in support of the idea that a retrovirus can be the cause of serious disease. Dr. Cheney and the Dr. B that presented at the ILADS conference either say directly or indirectly (through their statistics) that chronic lyme and XMRV exhibit a chilling degree of overlap. Cheney went so far to say that chronic lyme does not exist as a separate entity. Let's just get it out of the way that Dr. D-J is hardly alone in her emphasis on the retrovirus being the underpinning on her and her daughter's chronic illness.

As for tone, I personally don't care nearly as much about the tone as the content. 10 years after the AIDS epidemic began, no one cared how harsh you were but how right you were and how brave you were in being one of the first voices in the medical community to openly recognize AIDS, let alone openly call for ARV therapy. If ARV therapy will be found to be the answer in a large subset of patients 10 years from now, this blog will simply be regarded as evidence of Dr. D-J's call for change.

In calling out the ILADS doctors, I personally don't have as much issue with them, but that's because my experiences differ from her's. Dr. D-J feels she was severely harmed by long-term antibiotic treatment and has been in communication with many individuals that have been as well. I only felt worse when I was on long-term antibiotics and was lucky enough to know when to call it quits at around 6 months. I know that if I had just listened to my LLMD, whom is widely considered the best one in CA, I would've moved onto IV antibiotics when the bicillin-LA, zithromax, and mepron were only making me feel worse. I too think that the notion of feeling worse on drugs beyond a short period of time being a "herx" makes little scientific sense and is professionally reckless, yet casually-dispensed by many LLMDs and lyme patients alike.

The overall message that I haven't heard anyone discuss is the call for a paradigm shift. ILADS doctors may have gone against the grain because they went against the IDSA, but to think that they are immune from getting pigeon-holed in prescribing long-term antibiotics and in thinking that every mystery illness is a TBI is just plain naive. Every institution has its biases: a researcher in virology knows viruses the best and has had the most exposure to the field and will be naturally be prone to frame misunderstood illnesses as viral etiologies. A neurologist might gravitate toward neurotransmitters, neuropeptides, or brain lesions as explanations for cognitive dysfunction. A LLMD naturally thinks that lyme and co-infections are dominant, everything else secondary. If and when enough LLMDs start thinking that a retrovirus is the lynchpin to chronic lyme, they will no longer be called LLMDs but retroviral specialists. I think Dr. D-J is mainly saying (and she can feel free to correct me on this) that institutional biases will always influence us and our doctors alike. Of course, whether this will be a tectonic paradigm shift or just a niche that applies to a subset of chronic lyme or CFIDS patients, only time and lots more research money will tell.

I stopped posting for almost a year on this forum, because I just couldn't stand people telling me CFIDS was a TBI, or that they had "fatigue" too, after coming back from the gym or part-time work. It made me sick and angry, so instead of fighting back I just went to a community where if you didn't suffer nearly daily postexertional malaise, you didn't truly belong. Many lyme patients suffer from the same biases mentioned above, and rightfully so when their voices have been ignored and they were personally cured by long-term antibiotics. But nothing in chronic disease medicine is easy, and I see a groundswell here in seeing increased consideration of the potential seriousness of XMRV as an explanation for those that didn't budge on antibiotics. We should be lucky that we have medical professionals such as Dr. Deckoff-Jones, Dr. Michael Snyderman, Dr. Cheney, Dr. B, and others that are putting their careers and reputations on the line to fight for what they have reason to believe is truth.

[ 10-19-2010, 10:01 PM: Message edited by: m0joey ]

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shazdancer
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Hi Jamie,

I am following the investigation of XMRV/HGRV with interest, and hope that it will bring good answers for many of us. However, I also have a teen who was treated for tick-borne diseases for years, with oral antibiotics. He was debilitated. He is now well.

Is he simply in remission? Was it simply an anti-inflammatory effect? Perhaps. But he has done well for a year and a half now, off all meds. Holds his first job, maintains an apartment, has a girlfriend. Light years from where he was.

I am not ready to tell the world that ILADS is wrong, and I cringe when you do. I think it's premature. And for some patients, it is their only hope, for now.

Following the science, wherever it leads,

Sharon
www.lymebrary.com

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m0joey
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Hi Sharon,

If I'm correct in interpreting Dr. D-J's blog, she wouldn't say ILADS is wrong, especially not in the case of your son. I never interpreted anything she wrote as being anti-antibiotics,but rather anti-antibiotics for too long when they're making you worse beyond a short period of time. There is a clear difference.

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glm1111
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Hi Jamie,

Thanks for thinking outside of the box. I have posted ad nauseum about parasites and especially the Filarial Worms that Willy Burgdorfer found in the ticks he dissected.

Also a Connecticut researcher Eva Sapi has stated that she found Filarial Worms in 40% of the ticks she dissected. After 25 yrs of misdiagnosis of Fibro/CFS I was dx with Lyme and Co infections.

I was treated with abx and antivirals for 4yrs and not making much progress. After i took matters into my own hands I started antiparasitic herbs and salt/c.

Much to my shock and dismay I had the most G-D Awful creatures exit my body into the toilet as seen on

www.lymephotos.com

Sorry if I am off the XMRV virus discussion for a moment, but I have to ask why this is only being addressed by a handful of LLMDs like Dr. K.?

Have you considered this in the Lyme equation at all? Would appreciate your feedback on this.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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TerryK
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Joey wrote:

I don't think Dr. D-J is saying anyone is intentionally doing anything wrong, but rather that institutional biases will always influence us and our doctors alike.

Saying that they are witholding retroviral treatment in order to protect their revenue stream which consists of outrageous charges is definately saying that they are doing something wrong.

from the blog:
Of course, if current HIV drugs control the disease, LLMD's and CFS doctors will quickly become irrelevant. So why would they want to try them? Even if the patients are X+ and are begging for prescriptions. They'd lose their captive audiences. People traveling from all over to pay outrageous amounts of out-of pocket cash, which the doctors can justify to themselves, since they can't get paid adequately for what they do under the current system, as the patients aren't covered for what they have. Eventually ID doctors will treat it.


joey wrote:
I too think that the notion of feeling worse on drugs beyond a short period of time being a "herx" makes little scientific sense and is professionally reckless, yet casually-dispensed by many LLMDs and lyme patients alike.

My own personal experience. genetic tests and lab tests made me a believer. Read "Mold Warriors" and some of the other articles on biotoxins if you haven't already.

My sister has what I am sure is long term untreated lyme. Same symptoms as me. Her doctor (not LLMD) keeps putting her on massive abx for a sinus infection. For weeks or as long as she is on the abx she is so sick that she can't function. This has happened several times. This last our sister (her twin) called the doctor and told him that if she is to be on abx she needs to be in the hospital.

Too late, she had a massive heart attack this morning and they don't expect her to live. I blame the abx causing die-off. She has the same multi susceptible geno type as I do. She needs help getting rid if the toxins because her body does not make enough of the right kind of antibodies to keep up with such a heavy load of pathogen die-off.

If you are one who has this problem and you don't deal with it because you don't believe in it, you may never feel better or you may feel better only after you've been off abx for long enough for your body to clear the toxins.

Terry

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hadlyme
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Ditto that Bravo mOJoey

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Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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m0joey
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Terry-

a believer in herxing? I've read about biotoxins, done all the shoemaker testing, and realize that biotoxins can certainly make us worse from antibiotics/antivirals because of increased inflammation and toxin load. However, if you've talked with/read about people that do extreme mold avoidance, they do active detoxing of toxins for a short period of time. They don't feel worse for 6 months.

Of course, I do think if you're susceptible to mold that can skew your response to antibiotics. The extreme mold avoiders report being able to tolerate antibiotics/antivirals much easier afterwards. In that case, I certainly see the value in digging deeper to see if an unequivocally adverse response to antibiotics is due to added mold susceptibility.

There's no question I had lyme. I was CDC positive on IGM. The question is the method to treat it and whether it's the end-all be-all, enough to keep pushing long-term antibiotics for years on end when it's not resolving your main symptoms.

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TerryK
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Joey,
I'm not talking about mold toxins although I have the genetic for that too, I'm talking about borrelia toxins which is part of the HLA testing. As long as you are on abx, you will be creating the toxins until you are done killing.


Joey, you said you were on abx for 6 months. I finally cleared 70% of my pain after over 6+ months of IM ceftriaxine and awhile of clearing the toxins. This was after a few years of oral abx and babesia treatment.

I know someone who didn't get better until she had been on IV ceftriaxone for over 7 months. Now she is doing well but it took that long to see it.

In any case, I'm all for looking for XMRV but I don't appreciate the trashing of ILADS when they have been the only ones willing to stick their necks out to help people like me.

Sorry this thread went off target but as long as Jamie trashes our doctors, she will lose part of the potential audience who might be helped and who might help her with her cause.

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nomoremuscles
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Great post m0joey.
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hadlyme
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I for one do not want to be on antibotics for a lifetime. There has to be something, some key 'thing' that triggers all of us to have this differently.

Maybe it is the virus. Maybe it's the biofilm. Maybe we all don't know yet.

I think any of us at one point or two, want to trash anyone to do with any of this treatment thing.

And then at other times, we all agree with everything that is said.

Let's just all agree that we ALL want an answer to what's wrong with us. Some do it in different ways.

So... agree to disagree and agree that we all want our health back and leave it at that?

Time will tell..... and hope I'm around when it's figured out.

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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ukcarry
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Great post, Joey, although I do think that it's inevitable that many people will be put off by an aggressive tone on any topic, regardless of how justified.

Terry, I'm so sorry to hear about your sister and hope she will pull through,


Carry

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m0joey
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Terry--

Great to hear that you figured out a big piece of your puzzle, and best of luck to your sister.

We're lucky to have your insight here

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lou
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When are sick people going to realize that there frequently is no answer to their situation, that science does not have the answer for everything? It does no good at all to point fingers at doctors for not curing them in these situations. Doctors are constrained by the current state of knowledge, and as we know anyone who is out in front is on dangerous ground.

I see no difference between people who complain that lyme doctors see everything as lyme and people who think everything is XMRV. What lyme patients are being tested for XMRV, is my question? Probably the ones who don't have a good response to abx and have significant fatigue or who have previously been diagnosed with CFIDS, but who have lyme testing that suggests an additional exposure to tickborne diseases. Instead of either/or think multiple germs.

We need to have a more nuanced view of disease. To think of polymicrobial illnesses which can be composed of a variety of agents, to think of immune system malfunctioning in the face of chronic infections, to think of infection driven autoimmunity. This is a very complicated situation, and it takes minds who can deal with complexity.

Our medical system is set up to deal with acute illness, not chronic illness. And it does not do well with complexity. A lot of patients also do not cope well with complexity.

Inflammation seems to be a big problem with a subset of lyme patients. There is currently a lot of research on inflammation in general. Maybe we will get some help from other fields.

In the meantime, dogmatism does not help. Name calling does not help.

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m0joey
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"We need to have a more nuanced view of disease. To think of polymicrobial illnesses which can be composed of a variety of agents, to think of immune system malfunctioning in the face of chronic infections, to think of infection driven autoimmunity. This is a very complicated situation, and it takes minds who can deal with complexity."

Hey Lou,

I would say that you're right in the majority of cases, but AIDS is one such exception to the polymicrobial paradigm so we need to consider the possibility of both. Historically speaking, retroviruses seem to be an entirely different animal than other bugs because they severely immunocompromise the patient, rendering polymicrobrial and immune modulation therapy pointless.

I personally think ARV therapy + immune modulation will be the answer for people that are positive to XMRV and haven't responded to other therapies (that may be rhetorical with time, I don't know). Feline leukemia virus has been brought up as a good analogue to MLVs (of which XMRV is a subtype), and that has had a very positive response to vaccination in cats. HTLV I and 2 are probably much more similar human analogues to MLVs than HIV, and straight ARV therapy for HTLV-associated leukemia has been rather fruitless. More success has been achieved with a combination of ARV and interferon therapy.

In my opinion, dogmatism doesn't not help, but rattling institutional biases definitely helps all of us.

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lou
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Are you saying that people with retroviruses do not get bitten by ticks and get tickborne diseases? Or that they do not need lyme treatment, only retroviral treatment?

I am certainly not an expert with AIDS, but was under the impression that those people do get syphilis and a host of other serious ailments because of their immune suppression. Do they not get treatment for those diseases? Don't they die of those secondary infections?

And immune suppression is not restricted to retroviral diseases.

Not everyone with lyme disease has XMRV. Therefore those with chronic lyme must have some other explanations.

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m0joey
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Lou,

I'm in no position to say whether everyone with chronic lyme disease has XMRV. That's what Cheney says. Lyme disease which is treatable by antibiotic therapy is considered by all the doctors mentioned above as a different disease.

I'm not saying people with retroviruses don't get TBIs, but that treatment of chronic lyme with only antibiotics may not be sufficient without retroviral treatment. It's plausible that after reversing immune suppression, the lyme may go into latency.

You're absolutely right: people with AIDS died (and die) of secondary infection, not AIDS itself. The HIV virus itself does not kill the patient; it is just the catalyst. That's why I'm all for patients treating with antibiotics and antivirals while we wait for the XMRV landscape to take shape. I've done that myself. The reason why treating secondary infections while on ARV+immune modulation for XMRV may not be necessary is that the immune profile of CFIDS patients is the diametrical opposite of an AIDS patients. We're chronically over-activated (although chronically under-activated in NK cells) so we're constantly attacking everything including secondary infections, albeit not very effectively but evidently enough to stay alive for the most part. Also, the addition of an immune modulator may be enough to resolve the secondary infections during ARV treatment, both directly and indirectly. The second reason is that both chronic lyme and CFIDS patients in addition to chronic overactivation have displayed detox impairment and substance sensitivities that weren't hallmarks of AIDS patients. AIDS patients didn't display nearly the level of variation of response to ARV drugs that Dr. B's small sample size has, and that I've heard from anecdotal reports. Therefore, adding antibiotics/antivirals to a cocktail of ARV drugs will likely result in a pool of toxicity that very few of us will be able to handle. Sequential treatment seems much more logical.

You're right that immune suppression is not restricted to retroviral diseases, but retroviruses are the only pathogens that have the ability to integrate into the human genome. Hence the pathways through which it suppresses the immune system is likely much more direct and difficult to reverse than with lyme, per se.

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lou
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Just don't underestimate the ability of lyme to persist even without retroviral-induced immune suppression.

Seems like the advent of antibiotics is still making people underestimate bacteria. They can believe that viral diseases can elude our abilities to treat, but not bacteria. This is a systemic belief, not only in the medical establishment, but among patients too. It is wrong.

While I admire Dr. Cheney for staying with CFIDS, in spite of all the establishment discourgement, I think he may be overestimating the role of XMRV. All chronic lyme patients have XMRV? I do not believe this, and think the evidence is not there yet for knowing who does and does not have it.

It is interesting that both CFIDS and some chronic lyme patients have overactivated immune systems. Unfortunately, no one has documented this adequately in chronic lyme. The inflammation researchers in other fields are doing this and suggesting that one element or another of the immune system--chemokines, cytokines, or some other product--could be attacked by a therapy. But I am nervous about jumping in with immune modulators without knowing more about the whole system. They have found that people on TNF antagonists are unable to hold down latent infections, and end up sometimes with TB, or something else.

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