Church Shooter had mental illness due to LYME

[Joe M]

[user=86]Susan Lyme/RA[/user] wrote:

But now, they have completely changed their position regarding testing.  They do still say clinical diagnosis is preferred to testing but they also now say false positives are common. 

Susan, did the CDC say false positives are common from their testing?  It's obvious from my reading most chronic lyme deniers think some labs (Igenex in particular) return lots of false positives because of their differing criteria for a positive result, so maybe they were implicating them?  Is it their way of trying to deny chronic lyme?

[tainabell]

Joe, I'm not sure if this is the CDC's official position, but I have talked to several health care providers (Nurses, GPs, etc.) who told me that Lyme was so hard to diagnose because there are so many “false positives”.

[Maz]

Just in from Pam Weintraub, commenting on the Forbes article and shooter incident:

http://blogs.psychologytoday.com/blog/emerging-diseases/200903/chimp-attack-can-lyme-explain-it-forbes-wants-know

Jen and Susan, thanks for your kind words of support…but you're paying it forward just as much as me by coming here so often and sharing your personal experience and the things that have got you better….you're sort of volunteers without the designation. So, if you ever want the designation, just let Cheryl know! There are a number of tireless Road Back volunteers who work behind the scenes and have been at this much longer than I or who have retired after many years of service…Richie and Diana come to mind, but there are others who just aren't as visible as they don't post on the support forum. Then, of course, there is our wonderful Lynnie down under, who does so much on the support forum, too, and will shortly be updating the look of the website. She is one smart cookie and helps to keep us all organised and thinking ahead. Hundreds of volunteer hours per week go into Road Back, many of them behind-the-scenes and I sure can't take credit for all of those. 😉

Richie, Jen and all New Yorkers (or anyone who can make it), Road Back is presenting this weekend at the Manorville, Long Island Empire State Lyme one-day conference. Here is the conference flier for anyone interested in coming and meeting some very special people from Road Back. You'll recognize RBF's prestigious presenter by her surname. There will also be someone very special whose RA story was a big part of The New Arthritis Breakthrough and who helped to get Road Back going for us all:

http://www.empirestatelymediseaseassociation.org/one_day_conference_on_lyme_disease.htm

Peace, Maz

[Susan LymeRA]

Joe M said:

Susan, did the CDC say false positives are common from their testing?  It's obvious from my reading most chronic lyme deniers think some labs (Igenex in particular) return lots of false positives because of their differing criteria for a positive result, so maybe they were implicating them?  Is it their way of trying to deny chronic lyme?



 

Joe,  Great thought but I found the website again and they are actually speaking of the standard ELISA test.  They do also talk about other “questionable” tests.

http://www.cdc.gov/ncidod/dvbid/lyme/ld_humandisease_diagnosis.htm

Susan

[Kim]

My LLMD says it's the false negatives that are the problem because they aren't testing for enough strains and it's not always in the blood.  He says there are only 3% false positives.

Great article, Maz, from Forbes.  Boy, Pam Weintraub really nails it, doesn't she?

The conference this weekend sounds so interesting — wish I lived closer.  How exciting to learn that Scammel's daughter is carrying on.  You are so well versed in all of this that you should be on the panel.  Next time, eh? 🙂

[tainabell]

Love that article!  I actually just found another from Pam….

http://blogs.psychologytoday.com/blog/emerging-diseases/200903/pastor-killing-another-act-violence-attributed-lyme-disease

Money quote: Can Lyme disease provoke rage? Many psychiatrists and doctors working in the trenches with some of the sickest patients say the answer is yes, as do reports in the peer review. But murderous violent crime is not the typical M.O. for a patient with Lyme.

So don't worry, Kim, the odds are against you going on a serial killing rampage any time soon@  :roll-laugh:

[luvmywonderfulkids]

Maz,

Do you know if lyme can cause sclerotic cortical lesions? Ryan's xray came back showing this in his tibia.

Sue

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

Do you know if lyme can cause sclerotic cortical lesions? Ryan's xray came back showing this in his tibia.

There can be many causes of sclerotic cortical lesions – inflammation from injury or infection or a disease process of some kind. This means that scar tissue can be the result of healing (as from a stress fracture) or some type of degenerative process. Sclerotic basically means “scarring,” so there can be many causes of scar tissue in the bone.

Here is a site with all kinds of differential diagnoses, so it will be important to discover what may be the cause.

http://radiographics.rsna.org/content/23/1/157.full

Sue, what led the doc to do an X-ray of Ryan's tibia? Was he having tibial pain?

The Lyme coinfection, bartonella, can definitely cause serious tibial pain and it's something I suffered from in my left leg for several months early in treatment – absolutely excruciating shooting pain. Now, whether bartonella can cause sclerotic changes in the tibial cortex, I don't know, but it is an odd coincidence that the researcher, Alan Cantwell, discovered rod-like, gram-negative organisms (resembling bartonella) in the sclerotic skin lesions of scleroderma patients.

http://www.lymeinfo.net/coinfectionarticle.html

http://www.rbfbb.org/view_topic.php?id=2273&forum_id=1&highlight=cantwell+Lynne

Is Ryan's sclerotic tibial cortical lesion due to bartonella? I don't know…but according to the first link there are many potential causes, including infections, so I do hope some investigation will be done to figure out what may have caused this bone scarring, Sue, and really hope the docs get to the bottom of this for Ryan. Hopefully, it will just have been a now healed stress fracture.

Peace, Maz

PS Sue, this may or may not be of any value, but here is a link with some typical radiological findings of Lyme arthritis – unfortunately, some of these are from a chronic Lyme denialist at Yale, so some of the info may be skewed:

http://www.ajronline.org/cgi/reprint/158/5/1065.pdf

 

[luvmywonderfulkids]

Ryan has never had a problem with his tibia only his ankles and tops of his feet — I have no idea why she did the leg too. this is pretty scary and we will know a lot more tomorrow as he is having a full body MRI as well as 1 hand and one foot. I am frightened at what they are going to find.

Sue

[Maz]

[user=1274]luvmywonderfulkids[/user] wrote:

Ryan has never had a problem with his tibia only his ankles and tops of his feet — I have no idea why she did the leg too. this is pretty scary and we will know a lot more tomorrow as he is having a full body MRI as well as 1 hand and one foot. I am frightened at what they are going to find.

Hi Sue,

I just checked in with my daughter who is currently studying Anatomy and Physiology II for nursing and she said the technical name for the base of the tibia (inside ankle) is called the medial malleolus (the outside ankle is called the lateral malleolus), so this could by why the MRI of Ryan's tibia was done, if he is having ankle pain.

Wishing Ryan (and you) all the best for his full body MRI tomorrow. Please let us know how it goes. You'll both be in my thoughts.

Peace, Maz

[luvmywonderfulkids]

Maz,

Thank you so much! I looked up tibia and it made it seem like it was between his knee and his ankle — duh — this makes more sense since he is having so much pain there! Tell your daughter thank you!

Sue

[Kim]

[user=1274]luvmywonderfulkids[/user] wrote:

Maz,

Do you know if lyme can cause sclerotic cortical lesions? Ryan's xray came back showing this in his tibia.

Sue

Sue,

I had the most horrific tibial pain which must be Bartonella-related.  It complicated my diagnosis because I'd had a knee replacement and the tibia fractured where the hardware was attached.  The pain persisted long after the fracture healed so I think the infection found a happy home there.  Finally, finally, that pain is gone.

Good news for Ryan is that because he's younger he should have greater healing ability once they zero in on a game plan of attack.

Take care…..kim

[Patti D]

Boy,
I don't know how I missed this entire post. Thank you all for your insight. All very interesting and making me even more aware at how I really need to get an llmd in my court.I still have not taken the igenx lyme testing but don't think it will be accurate with 2 plus years on minocycline right?
Maria,
Can you pm me on any llmd in the Chicago Wisco area that may be covered by conventional insurance. Can't afford Dr. M as he is not covered under insurance.
Thanks all!
Patti

[Author]

Posts