Omg...i Might Be On To Something

[Rachel--24]

Sounds like fun to me. I think we have to learn to laugh at them, wouldn't that blow their tiny little minds? If I had more energy I would do it just for fun. I would make appointments with different doctors and present myself as if I don't know what is wrong with me and when they started to run their "there is nothing wrong with you", I would have the pleasure of setting them straight ...... ridiculous revenge fantasies take me nowhere but they are amusing.

Rinne....I can see you doing this!

Blowing their tiny little minds...LMAO

I do have tears that burn though, they are like acid, does anyone else?

Rinne....I get that too...hot, burning tears.

I'm so happy when my tears are wet (not sticky) and when they are cool (not burning my skin).... its a GOOD day when the tears are "normal".

[dlp252]

Sometimes my tears burn...hasn't happened too often though. I like the new Rachelville law!

[Rachel--24]

Rachel, it is astonishing to me that you have survived this, very presidential I would say.

OMGosh....its sometimes astonishing to me too!

I sometimes sit and wonder where in the heck I got the strength to deal with all this.

I think alot of it came from knowing all of you...and having all this support. I cant imagine I would've been this strong w/out you guys.

[CarlaB]

Julie, I gained weight during my gluten challenge a year ago. I had lost a lot of weight when I was not eating wheat but still getting gluten contamination, but I gained much of it back during my gluten challenge. I stayed steady for a while, but in the past three months have gone back to almost my low weight again. I seem to detox fine when I'm not eating foods that bother me, but one of the symptoms I had when I ate gluten was puffiness and water retention. I actually STILL am having d, but got tired of talking about it. It's actually the fatigue that's really bothering me. Adam is supposed to be finding me a doctor who uses Ingenex today ... after going to their website I just don't trust that my doctor will be using them. It appears that you have to order the test from them before you can be tested. Is that right?

[AndreaB]

That's interesting about the tears Rachel and Rinne.

Julie, what do you think?

[CarlaB]

Here's the latest update. Adam ordered the test from Igenex for me to take to my doctor. The test should get here next week, so he's scheduling an appt. for Nov. 13. I guess I won't know anything for quite some time .... the waiting game.

[AndreaB]

Carla,

At least your getting tested. Let's hope your doctor sends it in promptly.

[rinne]

The important thing Carla is that you are doing all that you can do right now and everything you are doing is supporting your health. I know waiting is a drag but at least you will be having the right test.

[dlp252]

The important thing Carla is that you are doing all that you can do right now and everything you are doing is supporting your health. I know waiting is a drag but at least you will be having the right test.

I agree!! Yay for Adam!!!!

[Fiddle-Faddle]

I do have tears that burn though, they are like acid, does anyone else?

I thought everyone did--I assumed it was the salt content?

[happygirl]

x

[Rachel--24]

I thought everyone did--I assumed it was the salt content?

I dont *think* everyone has burning tears. I know for sure that for 31 years before I got sick I never had tears that burned.

The other thing I was thinking about my "sticky" tears is that when my body is responding to allergens (which we know I have a ton of) its producing excess mucus. Excess mucus production can be an immune response to an allergen.

When I get a full blown reaction and have the whole sticky tears thing going on...I'm also feeling like there is mucus all throught my body....but mainly my hands and face. When I cry to get the tears out....I find I'm also having to blow my nose excessively cuz of massive amounts of mucus.

To me excess mucus production seems like a more plausible explanation for my sticky tears. Especially since the "stickiness" appears in the presence of too much exposure to perfumes or something else thats triggering an immune response.

Here's the latest update. Adam ordered the test from Igenex for me to take to my doctor. The test should get here next week, so he's scheduling an appt. for Nov. 13. I guess I won't know anything for quite some time .... the waiting game.

Good Job Adam!!

It does suck to have to wait it out. Sheeesh....I was a mess the 2 1/2 weeks I had to wait for my Igenix results. It seemed like a lifetime....and then I was told the results were negative when they werent.

You'll probably know by the end of the month....maybe right after Thanksgiving. It will be here before you know it....you know how it is with the holidays...they come around FAST.

[CarlaB]

My tears don't burn.

When I was a kid, I always woke up with gunk in my eyes. I get that gunk in my eyes again. I think it does have something to do with detoxing. Also, my irises look very different and are changing fast. They use to be very cloudy, a little greener than they are now. Now that gunk comes out of them, they are clearing up and becoming bluer again.

Good Job Adam!!

It does suck to have to wait it out. Sheeesh....I was a mess the 2 1/2 weeks I had to wait for my Igenix results. It seemed like a lifetime....and then I was told the results were negative when they werent.

You'll probably know by the end of the month....maybe right after Thanksgiving. It will be here before you know it....you know how it is with the holidays...they come around FAST.

Time would certainly go faster if I could do something ... I'm so low on energy it's going very slowly.

I am going to be sure to get copies of the results!!

[Lisa]

Hey Ladies and Richard:

On the topic of eyes....

Since going gluten free for over a year now, I don't seem to depend on my (20) grocery store reading glasses near as much as I used to. My reading/focus ability seems to have improved.

Any witnesses out there? Can your eye sight improve, ever so slightly?

(I just read the last page, so if I am interupting, sorry )

Lisa

[Rachel--24]

I am going to be sure to get copies of the results!!

Carla...the lab should mail you your own copies. I dont know if you remember but thats actually how I found out my results werent totally negative...I found them in the mail. I wasnt expecting them to send me the results...so while I was waiting anxiously to hear from the doc...my results were sitting in my pile of mail.

[CarlaB]

Carla...the lab should mail you your own copies. I dont know if you remember but thats actually how I found out my results werent totally negative...I found them in the mail. I wasnt expecting them to send me the results...so while I was waiting anxiously to hear from the doc...my results were sitting in my pile of mail.

Oh, yeah, I never look at the mail, I guess I'll be watching it once I get the test done!!

[Rachel--24]

(I just read the last page, so if I am interupting, sorry )

Lisa...dont be silly...anyone can jump in at any time.

I'm pretty sure it can happen...improved eyesight after going gluten-free. It seems like I've read alot of posts about that so I definately think theres alot of people with the same experience. Pretty cool to not have to worry about the glasses so much.

Does anyone know how Robbin is doing? She hasnt posted in awhile. I'm wondering if she was able to find a Dr. to order her Lyme test yet??

[AndreaB]

Does anyone know how Robbin is doing? She hasnt posted in awhile. I'm wondering if she was able to find a Dr. to order her Lyme test yet??

Robbin seems to stick with the Daily Strength forum. I don't think she's looked into lyme testing.....Rinne may know more as I don't always read journals over there.

[Rachel--24]

The arthritis of the third stage usually begins five to six weeks after the bite, although it may occur as early as one week afterwards or as late as many months later. Large joints, often those closest to the initial rash, are most often affected.

Hmmm....my bite was in the vicinity of my left shoulder. I would say my most affected joint would be my jaw joint (TMJ)....would this be the "closest" joint?? Interestingly all of my problems have been most severe in this region....from my shoulders up. The left side has ALWAYS been much worse. My neck stiffness is probably 80% on the left and only 20% on the right.

One thing that bothers me is how the "rash" is described. So many times I thought that my bite with the ring around it could not be Lyme because of the pics I've seen online and because of the description. They show BIG rashes and say that it starts out small and spreads lasting for several weeks. When I noticed mine it was dimesize or maybe even smaller.....it did not spread. It stayed the same but it did last for weeks. Since a large percentage of people never even see a bite or rash at all.....I'm sure in many cases it stays very small. If its covered by hair it wouldnt even be visible.

I wish they would have shown pictures of a small bulls-eye or even just mentioned that the rash doesnt have to be large or spreading....then maybe I would have tried harder to get tested. I could have went outside my HMO if necessary. I would have paid out of pocket just to know for sure.

[happygirl]

x

[Rachel--24]

Basic Information about Lyme disease:

Lyme disease is prevalent across the United States. Ticks do not know geographic boundaries. A patient's county of residence does not accurately reflect their total Lyme disease risk, since people travel, pets travel, and ticks travel. This creates a dynamic situation with many opportunities for exposure for each individual.

Lyme disease is a clinical diagnosis. Spirochetal infection of multiple organ systems causes a wide range of symptoms. Familiarity with its varied presentations is key to recognizing disseminated Lyme disease. Case reports in the medical literature document its protean manifestations.

Fewer than half of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven Lyme borrelial infection.

Fewer than half of patients with Lyme disease recall any rash. Although the bull's eye presentation is considered classic, it is not the most common dermatologic manifestation of early-localized Lyme infection. Atypical forms of this rash are seen far more commonly. It is important to know that the Erythema Migrans rash is pathognomonic of Lyme disease and requires no further verification prior to starting 6 weeks of antibiotic therapy. Shorter treatment courses have resulted in upwards of a 40% relapse rate.

There has never in the history of this illness been one study that proves even in the simplest way that 30 days of antibiotic treatment cures Lyme disease. However, there is a plethora of documentation in the US and European medical literature demonstrating histologically and in culture that short courses of antibiotic treatment fail to eradicate the Lyme spirochete.

An uncomplicated case of chronic Lyme disease requires an average of 6-12 months of high-dose antibiotic therapy. The return of symptoms and evidence of the continued presence of Borrelia burgdorferi indicates the need for further treatment. The very real consequences of untreated chronic, persistent Lyme infection far outweigh the potential consequences of long-term antibiotic therapy.

Many patients with Lyme disease require treatment for 1-4 years, or until the patient is symptom free. Relapses occur and maintenance antibiotics may be required. There are no tests available to assure us whether the organism is eradicated or the patient is cured.

There are 5 subspecies of Borrelia burgdorferi, over 100 strains in the US, and 300 strains worldwide. This diversity is thought to contribute to Borrelia burgdorferi's antigenic variability and its various antibiotic resistances.

Lyme disease is the latest great imitator and should be considered in the differential diagnosis of MS, ALS, seizure and other neurological conditions, as well as arthritis, CFS, gulf war syndrome, ADHD, hypochondriasis, fibromyalgia, somatization disorder and patients with various difficult-to-diagnose multi-system syndromes.

Lyme is the number one tick-borne illness in the US. The CDC reports there are 24,000 new cases of Lyme disease in the US, but the CDC says that figure could be under reported by tenfold. ILADS believes newly diagnosed cases of Lyme may occur at a rate five times higher than the number of new AIDS cases. Chronic Lyme is reported in up to half of patients treated for Lyme.

Symptomatic presentations of Lyme disease include:

Fatigue

Low grade fevers, "hot flashes" or chills

Night sweats

Sore throat

Swollen glands

Stiff neck

Migrating arthralgias, stiffness and frank arthritis

Myalgia

Chest pain and palpitations

Abdominal pain, nausea

Diarrhea

Sleep disturbance

Poor concentration and memory loss

Irritability and mood swings

Depression

Back pain

Blurred vision and eye pain

Jaw pain

Testicular/pelvic pain

Tinnitus

Vertigo

Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis)

Headaches

Lightheadedness

Dizziness

Completely off topic---sorry to break into this great lyme discussion---

but does anyone know anything about Genova Diagnositics (which used to be called Great Smokies Lab)? I know someone (rinne?) mentioned it at one point. Is it FDA approved? How do you get tests from them?

Thanks---

Laura

Laura,

I've had tests done from Great Smokies....have they changed names??

To get tests from Great Smokies you need a Dr.....I had an alternative Dr. at the time who was ordering my tests.

Yes....I am doing some research right now.

Lyme Disease Is No Walk In The Park

Find Out What You Need To Know

Many people do not know how widespread the Lyme disease epidemic is and the high odds that someone they know may be affected. Please take a few moments to read the following facts that demonstrate the seriousness of the disease.

Lyme Disease is a Major Epidemic

Lyme disease is a drastically growing epidemic. It is projected that people are infected with this debilitating disease at a rate of five times greater than that of AIDS.

Misdiagnosis

Estimates state that only one out of every ten cases of Lyme disease is reported and that many people are misdiagnosed. Therefore, the 19,000 cases reported by the National Center for Infectious Disease (CDC) each year are more likely to be estimated at over 200,000 cases.

Lyme disease may be difficult to diagnose because many of its symptoms mimic those of other disorders. In addition, the only distinctive hallmark unique to Lyme disease, the "bulls eye" rash, is absent in almost half of the people who become infected. The inadequacies of today's laboratory tests make proper diagnosis difficult, and it can be extremely troublesome to treat the infection in its later phases.

Lyme disease can attack virtually any system in the body. Some of the first symptoms may include a flu-like condition, with fever, chills, headache, stiff neck, achiness, and fatigue. Other symptoms can include pain in various joints and muscles, neurological problems, heart involvement, problems with vision or hearing, migraines, low-grade fever, or other symptoms. Lyme disease is often mistaken for other illnesses since the symptoms often mirror other medical problems, such as multiple sclerosis, arthritis, chronic fatigue cyndrome, lupus or Alzheimer's disease. In the some cases, patients can become paralyzed and/or comatose. Lyme disease symptoms may come and go, and be replaced by new symptoms. Symptoms may be subtle or pronounced.

Selection of Proper Physicians

When a patient with possible Lyme-disease symptoms does not develop the distinctive rash, a physician must rely on a detailed medical history and a careful physical examination for essential clues to diagnosis, with laboratory tests playing a supportive role.

The inadequacies of the current diagnostic tests and many physicians' lack of experience with the disease often prevent a correct Lyme-disease diagnosis. In the first few weeks following infection, antibody tests are not reliable because a patient's immune system has not produced enough antibodies to be detected. Antibiotics given to a patient early during infection may also prevent antibodies from reaching detectable levels, even though the Lyme-disease bacterium is the cause of the patient's symptoms.

[AndreaB]

Rachel,

It sounds, if I'm reading this right, that you may be in for longer treatment. Haven't you had lyme about 6 years.

What about Rinne? She's had it awhile too hasn't she?

[Rachel--24]

I almost had to leave work this morning....I was getting KILLED by some Bounce Dryer sheets.

There is a display of laundry detergents and fabric softeners near my cheese section....every 2 weeks they change whats on the display. I always react to the "scents" a little bit but not enough to send me over the edge. Today was different...OMG...those Bounce sheets were unusually STRONG. I couldnt even walk anywhere near my cheese section at all....not even holding my breath...it was that bad. Even a few of the "normal" people were affected by the scent.

I was almost crying and was pondering whether I should leave or not. I was angry that I couldnt get to my cheese.

When the manager got there someone told her and she took the dryer sheets off the display.

She said they would take them down while I was working.....I felt bad but even she said they were REALLY strong.

I dont even see how anyone could walk around all day smelling like that and NOT get a headache from it.

[happygirl]

x

[Rachel--24]

Rachel,

It sounds, if I'm reading this right, that you may be in for longer treatment. Haven't you had lyme about 6 years.

Andrea,

I got the bite and flu-like symptoms 6 years ago...I've been sick for 4 years now. Yeah...treatment will be long...I will always have Lyme Disease now thats its become a chronic infection. Stupid Doctors.