Omg...i Might Be On To Something

[happygirl]

x

[Rachel--24]

susan----i love your new avatar, by the way

Yes....very cute pic.

ok lyme ladies:

what is the actual estimate of the incidence of lyme, and what do lyme experts actually guess that it is?

Laura, Have you seen this site yet??

Open Original Shared Link

The widely held perception is that Lyme disease is a minor, nagging illness that is easily treated and cured with 14 to 30 days of antibiotics. When an individual complains of persistent illness, they are often told that the symptoms are psychosomatic or are caused by an autoimmune condition for which there is no cure. Transmission is deemed to occur solely by the bite of a tick infected with a spirochete bacteria called Borrelia burgdorferi, which is spread by deer, birds, and rodents. The conventional view holds that the disease is isolated to rural regions of the northeastern United States.

And yet others are calling Lyme disease a countrywide epidemic of major proportions, which is accruing billions of dollars in medical costs, long-term disability expenses, and lost wages. They insist that this debilitating disease has destroyed lives and in some cases has been fatal; a disease that one prominent Lyme physician called "more scary than a terrorist attack" in that it is so difficult to detect and so debilitating. They question why so many physicians are dismissing Lyme patients, denying them treatment, and accusing them of contributing to "Lyme hysteria." Those on this side of this issue claim there is substantial information supporting the existence of chronic infection in long-term sufferers. They believe that the controversy is not just medical, but rather one driven by insurance companies and politics.

Many wonder why the Center of Disease Control (CDC)-by its own admission-systematically underreports Lyme disease and contradicts aggressive treatment. According to the CDC, Lyme borreliosis is the fastest growing infectious disease in the United States after HIV, and the number one vector-borne disease in the country. Statistics from the CDC indicate that there were 23,763 cases reported in 2002. However, they acknowledge major underreporting, perhaps 10 times higher than their official estimate. In other words, there are almost 250,000 new cases a year and 2 million people in the United States suffering from chronic Lyme disease. Based on the discrepancy between their own clinical findings and that of the CDC, many researchers theorize that Lyme disease rates may be up to 100 times higher than the official CDC numbers. Although Lyme disease occurs predominantly in the northeast, cases have been documented in 49 states, with a large number of new infections occurring along the West Coast. To further complicate matters, the ticks that transmit Lyme also carry other bacteria, and these co-infections appear to be as complex as Lyme-and as difficult to diagnose and treat.

[happygirl]

x

[DingoGirl]

susan----i love your new avatar, by the way

thanks girls.....we had a small and comfortable group on Thanksgiving, only 14 of us, and it was a fun day. Um, Auntie had some wine...... And it is so weird, sometimes I am not kidding, I could drink an entire BOTTLE of wine and it could have no effect on me (I would not drink that much) and sometimes ONE GLASS will make me silly. well, sillier than USUAL......

[dlp252]

Before I forget, here is the link of the website where you can search for LLMDs:

Open Original Shared Link

I had to register and you get one search for a 30 day period...

[CarlaB]

Before I forget, here is the link of the website where you can search for LLMDs:

Open Original Shared Link

I had to register and you get one search for a 30 day period...

Yeah That's why I can't find out if my doc is on the list. I checked for my zip code, which didn't include NY. Does someone have an actual list I can look at?

[dlp252]

Hi Rachel,

Ray changed the heater filter and closed the vent to your room. Hopefully it is safe for you now.

Good idea. Go to the mail box.

Love,

Mom

Hi Rachel's mom!!!! Thank you for taking such good care of her!

Yea That's why I can't find out if my doc is on the list. I checked for my zip code, which didn't include NY. Does someone have an actual list I can look at?

Yep, I'd love the list that's getting emailed and pm'd around, lol. I was able to find two doctors on that website, but wouldn't hurt to know if they're accepted by the lymies, lol.

[Rachel--24]

Donna and Carla,

let me know if the link works. I sent it to Julie last night and she said it didnt work.

[CarlaB]

It didn't work. Thanks for trying.

[Rachel--24]

ok...I dont know what the problem is??? I can use the link just fine. Maybe there is some trick that I dont know about??

Anyways....I'll try to pm you guys the ones in your state. Carla....what state??

[CarlaB]

ok...I dont know what the problem is??? I can use the link just fine. Maybe there is some trick that I dont know about??

Anyways....I'll try to pm you guys the ones in your state. Carla....what state??

I'm in Ohio ... the doctor I found is in New York. I have family in Florida ... so that would be easier than NY. So would anywhere in OH, KY, IN, TN, and GA.

Thanks!

Did you double check what you cut and pasted to see if it still said the same thing? Maybe one of hte letters just got messed up.

[Rachel--24]

There are none in your state but I remembered that you're going to NY....so sent you those.

[CarlaB]

There are none in your state but I remembered that you're going to NY....so sent you those.

Thank you. He was on the list. My friend who recommended him told me he was, but it's good to see it with your own eyes.

[Rachel--24]

Thank you. He was on the list. My friend who recommended him told me he was, but it's good to see it with your own eyes.

Mine is on the list too but I'm not gonna be able to see her until March.

If I get impatient there are lots of others in my area but my own Dr. is really good too. He's not on the list but he works with 2 other doctors in the same office and they're both on the list. I figure the Dr. I'm seeing is probably considered a LLMD.

[CarlaB]

Mine is on the list too but I'm not gonna be able to see her until March.

If I get impatient there are lots of others in my area but my own Dr. is really good too. He's not on the list but he works with 2 other doctors in the same office and they're both on the list. I figure the Dr. I'm seeing is probably considered a LLMD.

If he's in the same office as two others, I'd bet he is. I'm sure they must share some of the same philosophy or they wouldn't be in practice together.

[Rachel--24]

If he's in the same office as two others, I'd bet he is. I'm sure they must share some of the same philosophy or they wouldn't be in practice together.

Yeah...and I'm kinda partial to him since he's the one that said "Have you been tested for Lyme Disease??....we need to do that right away."

He seems to have all of the knowledge....only thing is he NEVER smiles....he's VERY VERY serious.

Whatever....as long as I get some help.

[happygirl]

x

[CarlaB]

Laura, if you could send me that link, that would be great! I can use the one that Donna has, but I've already used it ... it would be nice to see what states LLMD's are in so I can choose where to go since I have to travel. Several other places would be a LOT easier than NY!!

[happygirl]

will do. xo

[CarlaB]

Thank you, Laura. There is a doc in Clearwater near my dad, but he's an infectious disease doc and sees some Lyme Patients. The doc in NY apparently only sees Lyme patients, so I might be better off with him. It sure would be easier to go to Florida, but I want to see someone who can make me better. Maybe they'd both be the same ... who knows.

I got my statement from IGeneX today. I was all excited thinking it was my results already. How long did it take to get your results after your statement? I think it will be a while for me as this was mailed on the 21st and I rec'd it today, the 27th.

[rinne]

From everything it souds like about lyme no matter what my tests show i think it would be good to contact someone whos specialty is Lyme.

I have to go in tomorrow to get all the blood work done- at 2 different labs which is a drag but at least I will hopefully get it done and be a step closer to finding something out

Miamia

I'm glad to hear that you plan on doing that Miamia.

ok lyme ladies:

what is the actual estimate of the incidence of lyme, and what do lyme experts actually guess that it is?

What I am reading leads me to believe we are on the edge of the next great epidemic. Some of the researchers believe there is a gathering of viruses that at some point will tip us into crisis. This may not come for five or fifteen years but it is coming, as a species we will not stop what we are doing and there will be consequences. I don't like to think this way anymore but I am afraid that I still do.

I went for a little retail therapy today after having a filling out and new filling, all by the proper method, and came home with the most adorable little t-shirt for the baby. I am thinking about new life and wish the world a gentle place for her to grow up in.

I want a LLMD now too. There are two in Canada, both of whom are big time into ABX.

Has anyone taken Vitamin D? My drops arrived and I am not sure if you take them on an empty stomach or full one, off to check the web site to see if it can help.

[dlp252]

Retail therapy, my favorite kind.

[linds]

Sorry this is long but carla refferred me. This is my problem I would love any advice anyone has!!!

I never had any stomach issues until about a year and a half ago. My family refers to me as having a stomach of steal (even when I get the flu I don't actually throw up). this is except for a short period of time in 6th grade when I had stomach aches (but nothing more) for a few months and then they just disappeared. Then about 1.5-2 years ago I noticed and upset stomach after eating greasy foods, always from a fast food restraunt, things like burgers, fries, and onion rings. I attributed that to the fact that since I had left for college in the fall of 2003 I hadn't ate any greasy foods at all. While at college i only ate salads, fruit, turkey sandwhiches, and pasta. this continued until august of 2005 when I had my first major episode as i refer to it. This was after eating a polish on the grill, once again greasey. I felt nausous and cramping and bloating. The worst part was, that i was at my boyfriends moms house which is literally in the middle of nowhere and had to walk 30 yards to the out house to go to the bathroom. They have no running water or electricity where they live. Then everything got better for a bit I tried prilosec otc and had what i thought was a miracle. I felt amazing and could even eat fast food again. Then november of 2003 it hit me like a ton of bricks and it didn't matter what i ate. I was cramping, bloated, burning in my stomach, and a gnawing pain right arround my belly button. It didn't matter whether I ate a salad or crackers or applesauce it never went away. A year later those symptoms are all still here. and I now have C which started in august of this year. I have never had D. i also have a fast heart rate all of the time. Resting it is between 120 and 140 beats per minute. I did the 24 hour heart monitor test and it peaked at 184 while i was laying on the couch watching tv.

I have been to so many doctors i feel like they can't help I have been to 2 gi's a cardiologist and a few different gp's. I live in a very small town and just to see a specialist its a 2-3 hour drive which makes things that much harder. My breathing is fine and i have had joint pain since i was in middle school but i have already been diagnosed with arthritis in my left hand (due to a bad break) and i am only 21! But I was a very dedicated figure skater up until i was 19 and took A LOT of hard falls which is why they think i get so sore

I do occassionly have a yogurt but that doesn't seem to bug me that much. What worries me is that i feel bad even if i don't eat anything. It's 3:10pm and I haven't ate since last night and i still feel like crap!

I have been COMPLETELY gluten free for 2 months. All i eat is meat, fish, potatoes, rice, and tinkyada pasta. With a few homemade baked goods that are gluten free. And I swear to you I am getting worse!!!! I seriously want to go eat a few pieces of REAL 12 grain whole wheat bread just to see how I feel. but then i am scared that if this is a gluten problem i will really pay for it. Another reason why I wonder is because I used to eat noodles just plain with a bit of cheese on them when i felt horrible and they didn't make me feel bad. But I still went gluten-free because I am desperate to find an answer!!!

[CarlaB]

Welcome Linds! I told her to post here because some of you might have some answers for her. She has a thread titled "Enterolab". I thought so many of us have researched so many different problems that someone might have some kind of advice.

Lindsay, I'm curious, is your left hand the only place you have arthritis?

[dlp252]

Hi linds, welcome! Gee, the first thing that I thought was gallbladder, but you've seen GI doctors and seems to me like that would have been the first thing they thought of. Have you had any scopes done...colonoscopy or endoscope?