Film
 

A new film about Lyme disease is being produced and will be out , hopefully in a few months. You can find the trailer at http://www.undertheeightball.com/

Tim Hall Camera man made this film due to his sister's death from Lyme disease.



I had 30 Neuro.'s Miss DX me with RSD.

I beg each and everyone of you to ask WHY you have RSD. I am not saying you all have Lyme, but maybe some do.

I have and had Lyme's Disease.

Much Love, Roz

To my lovely English mates,

Check this out.


http://www.lymeneteurope.org/


DO BIRDS FLY?????

Much Love, Roz xoxo

I was tested...
 

Hi Roz,
Thanks for bringing that to our attention. I was tested for Lyme and the test results are just not conclusive. Everyone might want to read Lab 257. Lyme was created for germ warfare, migration of animals from Plum Island (find that one on a map) was not predicted and resulted in a spread to Lyme Connecticut and ...... . If the CDC were to recognize everyone that had Lyme, well.....now just who would be responsible for all those affected and afflicted. Guess, the government......yeah right!!:cool: OK Roz you got me going. The Lyme test only test for antibodies and were out of pocket expenses for me. I wish I could scan and attach my results. Here's a disclaimer on my test and I quote. " Diagnosis should not be based on laboratory tests alone. Results should be interpreted in conjuction with clinical symptoms and patient history." There are no conclusive negatives here. In my opinion and the opinion of many others, a true way to find out if you have Lyme disease is to have your blood examined under a "dark field microscope" then you could see the spirokeets.
I recommend Lab 257 and keeping an open mind. Oh, the treatment for Lyme...You guessed it HBOT and antibiotics. The oxygen under pressure kill parasites at 2.4 ata and we ALL have parasites. I lived in Alaska for five years, and Colorado for many more, climbing mountains and exposed to tick bites. A bite is not the only way to contact Lyme. Other suggestions...milk, food and physical contact. I think if we only knew ...again read Lab 257, things could change. I have been ill for 20 years and with NO resolve. HBOT helps me greatly improve my life. Thanks again Roz.... Oh, I do have the conference on Lyme on my laptop. Also you must really get a Lyme literate doctor for this!
Diana

Hi Diana,

I love being outside too even though I am a hairdresser, I am not a girley girl.

I love sports like basketball, tennis just about anything but golf.

Do you miss hiking because , I sure do.

My Lyme Literate MD is fantastic.

NO INFECTIOUS DISEASE MD WILL DX ANYONE WITH UNTREATED LYME & ALL the INFECTIONS THAT GO WITH IT. You hit the nail on the head.

One co-infection I have is Bartonella, you can get from a flea bite. Tested neg- for it but on antibiotics for it.

cont...

Yep, I miss a lot of things!
 

Whatever I have, it has certainly changed the quality of Life. Although, some for the better. In Alaska, I spent a lot of time in the wilderness, snow shoeing and skiing for Gym as well. I ice skated for years. Colorado, oh yes...I loved hiking and climbing, biking, fishing. You see, I have 4 brothers and 2 sisters and we spent our youth out of doors. The greatest childhood memories of mountains, rivers, glaciers and here I sit in the desert! I know..at least I am alive AND I have those wonderful memories. Now I do what I can, in the water. It just doesn't hurt as bad. Roz...all the best to you girl! Keep in touch. Thanks for the trip down memory lane. Love Di

NEUROBORRELIOSIS: MAKING THE DIAGNOSIS (LYME)

Because of difficulties in making the diagnosis of neuroborreliosis, the physician will need a familiarity with the most common forms of presentations, which will be emphasized. The following points will help evaluate the patient for neuroborreliosis:

For most patients, systemic features of disease coexist with, or predate, neurologic manifestations.
Both central nervous and peripheral nervous system involvement is frequent with Lyme disease and typically occur together.
Laboratory data may or may not confirm the diagnosis, and other disease in the differential diagnosis must be evaluated thoroughly in cases where diagnostic ncertainty exists.
Although history of exposure to B. burgdorferi should be sought, for various reasons, patients may not remember a history of a tick bite, or the pathognomonic rash particularly if the disease is presenting years after the exposure.
Early on, personality changes, psychiatric symptoms, or cognitive manifestations may be the first, and occasionally the only, symptoms that the patient or family is aware of.

http://www.ilads.org/goldings.html

Interleukin-6 is expressed at high levels in the CNS in Lyme neuroborreliosis
 

http://www.neurology.org/cgi/content/abstract/49/1/147


If I could help just one RSD patient, that might be miss DX like I was. I am NOT thin skined, I would just appreciate anybodies opinion.

Much Love





ON a very serious note, I beg of each and every one of you to try to get to the Root of why you have RSD. You are ALL winners who never ever give up. I was given NO hope at all fully disabled. That is what all the 30+++ MD's have told me.














r

Always Concerned We Are Overlooking Something
 

Thank you for this post. I often suspect that there might be more to my daughter's illness than any doctor has diagnosed. How did you finally get answers? I am so very happy that you finally received a correct diagnosis. Have things improved now that your doctors know what they are treating? Praying that is the case!!!!
Jeanne

Hi Jenno,

You have got to be your daughter's ADVOCATE.

My RSD pain used to be off the charts. It was soo bad I was on the Duragestic patches. Alot of pain medication I was on, was worse than Heroin. I am now free of pain meds.

BELIEVE your daughter, the pain is 24/7 what she is going thru. Worse than childbirth.

A LYME DX has alot of CONTROVERSY, the MD's that treat it are at risk for loosing their license.

I will say more if your up for it.

Much Love, Roz

So Want to Know More
 

Hi Roz,

I so want to know more! I would truly go to the ends of the earth to find answers and help for my daughter, Sarah. I have seen firsthand that doctors often don't recognize the problem even when they are blatantly faced with the facts ... and if they don't know what is wrong, how will they will ever be able to help.

I have always believed Sarah's pain is unimaginably horrible; however, there have been doctors along the way who have tried to convince me otherwise. I have been asked by friends, "Don't you just wish it could be you?", and of course I do .... but in truth I know that I could not have endured what she and others like you have. Sarah has been so brave and strong ... the inspiration for me to never stop looking for a cure.

Please, please share your experience!

Thanks,
Jeanne

Interesting that you suggest this. When I first developed RSD (1986) was the time that Lyme was just being 'widely discovered.' I had many doctors suggest I had Lyme because they didn't know what else it could be. At that time, the best test for Lyme was the symptoms. I had very few of the symptoms - and none of the 'classic' markers - but it was convenient for the doctors.

This all points to: get a second opinion, third opinion, even fourth opinion or more if it doesn't add up right.

Thank you for the reminder, Roz.

Mike

Under OUR SKIN

I watched this a while back. I could physical relate to them in the film. PRESS Trailor


http://www.snagfilms.com/films/watch/under_our_skin/

Read this Article as well, by someone named GERI.

Below is just part of the article.

It took a year and a half and over 30 doctors in many states before I received a diagnosis of Lyme disease and began treatment. Before my diagnosis of Lyme disease, I was also diagnosed with Reflex Sympathetic Dystrophy (RSD), which is a pain syndrome affecting the sympathetic nervous system. I decided to attend a RSD Pain Rehabilitation Program for six weeks at the NIH Outpatient Centers at Bethesda, Maryland.




http://www.geocities.com/HotSprings/...ersonal21.html

Quick Note
 

I'm off to the doctors, so just a quick note. There is also a video called "Under my Skin". I haven't seen this will try to post a link if there is one, later.
Thanks for the info! Di

Dear Jeanne,

Your beautiful daughter is blessed to have a caring mother like you. My youngest was 8 he is now 16, he NEVER had much of a mum for 8 years. He loves me and is just a good teenager, very caring towards me.

I was dragged to at least 100 MD's by my husband, around 30 neuros.

Well one MD said I think you have Lyme Disease ( I am sure this is NOT in my medical chart), he explained you can get it from any bug bit. He didn't treat it anyway.

At the time I thought how silly, I didn't believe it. I could't believe how any little bug could have caused me to be in such rough shape.

Much Love, Roz

Dear Mike,

You mention it was convenient for the DOCS.., Lyme Disease is VERY difficult to treat. Were you treated at all for it?Hugs, Roz

Hi Diana,

I read a couple articles about LAB 257, very shocking to say the least.

I'm not sure if it true or not but heard Borrelia ( LYME)dates back to Russia 200 hundred years ago.

Much Love, Roz

No, I was not treated. In 1986, there was no good treatment, only relief (?) from symptoms. They were not even sure what was causing the spread at that time.

Or, a doc would declare "LYME" and then go on to say they did not know how to deal with it, but they did not know to whom they should refer. That's what made it a relatively easy cop-out. (I even had one neurologist tell me I had malaria, and wanted to know if I had been to Africa and bitten by a tse-tse fly!)

That's all I meant by convenient - they would just pass me off to someone else without treatment. :(

Mike

Dear Mike,

You could have this co-infection that goes with lyme as well.

http://emedicine.medscape.com/article/212605-overview
The clinical signs and symptoms of babesiosis are related to the parasitism of RBCs by Babesia. Fever, hemolytic anemia, and hemoglobinuria may result from Babesia infection. As with malaria, RBC fragments may cause capillary blockage and/or microvascular stasis, explaining liver, splenic, renal, and CNS involvement. As with malaria, cells of the reticuloendothelial system (RES) in the spleen remove damaged RBC fragments from the circulation. RBC destruction results in hemolytic anemia.



YOU NEED A LYME LITERATE MD., I have one but I am in CA.

No infectious disease or Neuro. will treat LYME. This is VERY DIFFICULT to treat. I am sure they have a LYME LITERATE MD where you are.


Be good to you, Hugs, Roz

Hi
 

Hi Roz,

I can't believe this- How are they going to treat you? I don't know how to get tested for Lyme. They did the standard blood test when I was first diagnosed. But now I am wondering....I never did have an accident or injury to cause my RSD and no txs have worked for me..

Good luck

Debbie

The parallels between RSD and spirochetal infections like syphilis or lyme disease are uncanny. The docs believe the brain changes are the result of pain but some RSD patients don't even experience pain. One has to suspect this might actually be a few different diseases and some might involve multiple infections.

Hi Bud,

I did certainly experience pain, no short of being tortured. I hope your pain levels are down.

You have always been so quiet around here. You are very bright, we need to hear from you.;)

About the multiple infections, shall we call it LYME and Company.:wink:


Much Love, Roz

Dear Debbie,
I could't believe it either.

http://www.snagfilms.com/films/watch/under_our_skin/

Press on this link. Scroll down and press Watch Preview. You will find a LYME LITERATE MD in New York.

The tests are NOT accurate, this is made by a Clinical DX.

If you do have lyme, you will get better instead of getting worse. Hugs, Roz

Seronegativity in Lyme Borreliosis and Other Spirochetal Infection

http://www.lymeinfo.net/medical/LDSeronegativity.pdf

Up dancer and dixon