Omg...i Might Be On To Something

[dlp252]

Oh and Dr. S LOVE my purple toes!

Hated that I ate chocolate and sugar....bad Donna, very bad Donna! He said I REALLY have to stay away from it cuz of the mold issue.

He also won't probably treat me with antibiotics because of the mold issue, so it looks like natural for me. He did mention IV therapy for all of my woes, but that would be way down the line.

[DingoGirl]

Fortunately we had dental coverage when I had mine out ... since they were so old, they were covered. I felt much better and put the Lyme back into remission for over ten years after I had them removed. I hope God provides a way for you!

I actually called in sick to work today. First time in seven months. Too tired to fake it today. But.....on Thursday when I go in, I am going to find the first single guy with a dental plan, and ask him to marry me.

Niece and boyfriend (um, she is 24, he is FORTY - but I do like him very much) will be paying me some, but they won't be here long - - just two to four weeks. I am sure they will be generous wtih me. right now I am going around the house picking up after her. We are going to go over the wilderness rules of "leave no trace" this evening. Although, she is in a cast - so I"ll allow her some slack.

I am so grateful for the love and support here.

And Bev - - thanks for the wonderful pm.

love and kisses to all of you. now have to head to hardware store. and then get food. and then walk dogs, when it cools, and then I can go to bed with fan blowing on me........finally.

Donna - - chocolate and sugar - - um, what? remove the two major food groups? I don't think so!

[jerseyangel]

I just got a chance to come back on for Donna's results. Had to do a few things and get dinner going....Stupid stuff to do

Anyway, wow--lots of good new information. You did a great job of keeping it all straight--I never could! Definately a good idea to get rid of the carpet as soon as possible. Good idea--but expensive In the long run, though, for the best.

Sounds like he has a good plan for you--I'm so glad

Susie, please take some of the rent money they will be paying you and see that gyn--I'm concerned. Not that other things aren't important, but this could be something that needs immediate attention. PM me to talk anytime.

[jerseyangel]

Hey Patti!

My hubby wants some of that meringue pie!

I wish we lived closer--I'd invite you guys over for some

[CarlaB]

I am going to find the first single guy with a dental plan, and ask him to marry me.

Even better, find a single dentist!

[AndreaB]

Yeah, I've known I needed to do something about the carpet for a long time, but every time I get enough saved to do it, something comes up. This year it was my stupid car with the timing belt and the exhaust system, then the amalgam removal and all the medical stuff and bioset treatments...talk about credit card debt.

Boy do I hear you! We just found out last week that the problem with my hubby's car shifting is the transmission going out. It would cost $2500-3500 to fix and the car is only worth about $1000. It's a little metro. We're going to run it til it doesn't run anymore but I'm hoping it hangs in there for a couple years. It doesn't even have 100K on it yet.

Ouch on replacing the carpet. Maybe you could do a little at a time. I don't know if that would cost more or not. Get your bedroom done first if you have to go in spurts.

I've got your results posted over to my spreadsheet. When we get Bev's I'll post them. Although it doesn't look so neat since all the spaces are taken out on this side of things.

How did ART prioritize things for you?

Niece and boyfriend (um, she is 24, he is FORTY - but I do like him very much) will be paying me some, but they won't be here long - - just two to four weeks. I am sure they will be generous wtih me. right now I am going around the house picking up after her. We are going to go over the wilderness rules of "leave no trace" this evening. Although, she is in a cast - so I"ll allow her some slack.

I am so grateful for the love and support here.

Sounds like a plan. You sound like a very busy person for being so tired.

and hugs back at you.

I wish we lived closer--I'd invite you guys over for some

We'd love that!

Even better, find a single dentist!

[AndreaB]

Here's an old post I'd copied over before. Don't know if this is what you were talking about Carla.

On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C. The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

23-25: Outer surface protein C (osp C).

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

31: Outer surface protein A (osp A). 34: Outer surface protein B (osp .

37: Unknown, but it is in the medical literature that it is a borrelia-associated antibody. Other labs consider it significant.

39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all.

41: Flagella or tail. This is how Borrelia burgdorferi moves around, by moving the flagella. Many bacteria have flagella. This is the most common borreliosis antibody.

45: Heat shock protein. This helps the bacteria survive fever. The only bacteria in the world that does not have heat shock proteins is Treponema pallidum, the cause of syphilis.

58: Heat shock protein.

66: Heat shock protein. This is the second most common borrelia antibody.

73: Heat shock protein.

83: This is the DNA or genetic material of Borrelia burgdorferi. It is the same thing as the 93, based upon the medical literature. But laboratories vary in assigning significance to the 83 versus the 93.

93: The DNA or genetic material of Borrelia burgdorferi.

And this.

Band 41 is for the flagellum, or tail,

of the bacteria. Many bacteria besides Lyme have a flagellum, so this

band alone without looking at symptoms and history should not be used

for diagnosing Lyme. Band 41 shows up in 85% of those with Lyme, 42% in those

that do not have Lyme, and 75% of those that have Syphilis. Other

bands like 58 are more indicative of Lyme. It shows up in 36% of those

with Lyme, but only about 2% in those that do not have Lyme and 3% in

those with Syphilis. Other bands like 23-25 only show up in those

with Lyme. So certain bands cary a lot more weight than others. The

CDC criteria does not take this into account. How long you have had

Lyme affects how strongly the bands show up. If you have just

recently been bit by a Lyme carrying tick you may not show any bands,

since it takes your body time to create the antibodies. The Igm

antibodies show up first and then the Igg. Also, if you have had Lyme

for along time you may not have many or any bands as your immune

system is worn down.

certain other bands are considered highly specific for Bb (Lyme) --

31 kDa band, for example, or

34 or

39 or (anywhere between 22 and 25).

Also thought to be species-specific are

The 83 and

94 kDa bands.

Many Lyme disease scientists believe that any patient whose IgG Western blot exhibits bands at, say, any three (or even two) of these locations almost certainly has Lyme disease, regardless of whether or not any other bands are present. They feel that these bands on a Lyme Western blot are simply more meaningful than other, less specific ones and that a rational interpretation of a WB result should take this into account.

[AndreaB]

Here's a questionairre I had copied over.

PRINT AND CIRCLE ALL YES ANSWERS ( 20 yes represents a serious potential and Lyme should be included in diagnostic workup )

Symptoms of Lyme Disease

The Tick Bite (fewer than 50% recall a tick bite or get/see the rash)

Rash at site of bite

Rashes on other parts of your body

Rash basically circular and spreading out (or generalized)

Raised rash, disappearing and recurring

Head, Face, Neck

Unexplained hair loss

Headache, mild or severe, Seizures

Pressure in Head, White Matter Lesions in Head (MRI)

Twitching of facial or other muscles

Facial paralysis (Bell's Palsy)

Tingling of nose, (tip of) tongue, cheek or facial flushing

Stiff or painful neck

Jaw pain or stiffness

Dental problems (unexplained)

Sore throat, clearing throat a lot, phlegm ( flem ), hoarseness, runny nose

Eyes/Vision

Double or blurry vision

Increased floating spots

Pain in eyes, or swelling around eyes

Oversensitivity to light

Flashing lights/Peripheral waves/phantom images in corner of eyes

Ears/Hearing

Decreased hearing in one or both ears, plugged ears

Buzzing in ears

Pain in ears, oversensitivity to sounds

Ringing in one or both ears

Digestive and Excretory Systems

Diarrhea

Constipation

Irritable bladder (trouble starting, stopping) or Interstitial cystitis

Upset stomach (nausea or pain) or GERD (gastroesophageal reflux disease)

Musculoskeletal System

Bone pain, joint pain or swelling, carpal tunnel syndrome

Stiffness of joints, back, neck, tennis elbow

Muscle pain or cramps, (Fibromyalgia)

Respiratory and Circulatory Systems

Shortness of breath, can't get full/satisfying breath, cough

Chest pain or rib soreness

Night sweats or unexplained chills

Heart palpitations or extra beats

Endocarditis, Heart blockage

Neurologic System

Tremors or unexplained shaking

Burning or stabbing sensations in the body

Fatigue, Chronic Fatigue Syndrome, Weakness, peripheral neuropathy or partial paralysis

Pressure in the head

Numbness in body, tingling, pinpricks

Poor balance, dizziness, difficulty walking

Increased motion sickness

Lightheadedness, wooziness

Psychological well-being

Mood swings, irritability, bi-polar disorder

Unusual depression

Disorientation (getting or feeling lost)

Feeling as if you are losing your mind

Over-emotional reactions, crying easily

Too much sleep, or insomnia

Difficulty falling or staying asleep

Narcolepsy, sleep apnea

Panic attacks, anxiety

Mental Capability

Memory loss (short or long term)

Confusion, difficulty in thinking

Difficulty with concentration or reading

Going to the wrong place

Speech difficulty (slurred or slow)

Stammering speech

Forgetting how to perform simple tasks

Reproduction and Sexuality

Loss of sex drive

Sexual dysfunction

Unexplained menstral pain, irregularity

Unexplained breast pain, discharge

Testicular or pelvic pain

General Well-being

Unexplained weight gain, loss

Extreme fatigue

Swollen glands/lymph nodes

Unexplained fevers (high or low grade)

Continual infections (sinus, kidney, eye, etc.)

Symptoms seem to change, come and go

Pain migrates (moves) to different body parts

Early on, experienced a "flu-like" illness, after which you have not since felt well.

Low body temperature

Allergies/Chemical sensitivities

Increased effect from alcohol and possible worse hangover

When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab. Lyme needs continuous, aggressive treatment. Besides Lyme, ticks can also transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

[Rachel--24]

What I am afraid of, is that my Celiac dx came too late in life for me (my 45 years is about 75 for a normal person ) and that I truly am just suffering a permanently broken heart and a body that is worn out. and maybe I have actually NO neurotransmitters left? utterly NO chemicals of well-being?

Susan....Noooo....you are not too old and you are not permantly broken. I think Celiac is just one piece of the puzzle for you. People sometimes forget that autoimmune disease gets triggered by *somrthing* and often times that *something* never gets truelly identified.

No doubt if I were genetically susceptible I would have gotten Celiac. I remember being disappointed that I didnt have a main gene or an "official" diagnosis. I think it was the biggest blessing because I dont think I would have put as much effort into looking deeper into why I became gluten intolerant...and why so many other intolerances.

I think you should look into all the things previously mentioned. I have Lyme but not all the "physical" problems that can manifest from an active infection. My Lyme infection (according to tests) is not very active....its just "chilling" in my body....hanging out.

Obviously its not too good to have it hanging out like that....making my immune system have to work harder and making me more susceptible to other things...like mercury.

I dont know if I would have gotten slammed so hard from the mercury if Lyme wasnt in the picture. There is a very strong link between the two....having the infection leaves you more vulnerable to other neurotoxins...especially mercury. I have actually never been sick from the Lyme....but I do think it was the trigger for my Graves Disease and likely would have triggered Celiac had I been susceptible to it.

I got intolerant to gluten and everything else after the mercury and candida became big problems for me. Mercury inactivates the enzyme necessary for breaking down gluten and casein.....not to mention all the other enzymes it interferes with.

It also totally messes with neurotransmitters, hormones and basically every part of the body....especially the brain.

So yeah....you could have Lyme....it wouldnt be far fetched.....like me you're pretty outdoorsy. I would actually be shocked if you didnt have it....just based on the statistics. Having the infection doesnt necessarily mean its causing the symtpoms you're experienicing. It could just be opening the doors for other things to occur....like Celiac....or it could allow for toxicity from other sources (i.e. mercury) to accumulate within your body and this could definately affect your brain.

I'm always inclined to believe that when things arent right theres a reason....there is always a definate reason for ongoing symptoms...physical or otherwise. Its just a matter of identifying it.

Theres two ways you can go about it...you can accept depression as a part of your life and take whatever medications ....or you can try to determine if there is something behind all that you're feeling...the fatigue, abdominal pains, etc.

I would choose the later....but I think we all know that.

You cant get tested appropriately for Lyme and definately not mercury through a physician...or any traditional type Dr.

Best way is through an LLMD or someone with alot of experience dealing with mercury toxicity and Lyme....and this would usually be an LLMD.

I know my Dr. could come up with some good possibitlites as to why you're feeling this way...and he would run all the appropriate tests....plus the tests that you've never had before because the regular Dr.'s dont run them.

If you can afford an LLMD (dont know if you have insurance??) it wouldnt hurt to get tested and see what is or isnt going on.

I feel like I'm suffering permanantly from a broken heart too.....but I'm really not....my heart will heal along with the rest of my body once these toxins are escorted out of my body.

The chemicals of "well being" are still there....toxic stuff just interferes with how everything should work....making us unstable.

[Rachel--24]

Dang Donna....thats alot to absorb!!

He ran alot of tests. I only had the Westerm Blots (and I had the results before my follow up appt.) and the vit/min deficiencies done. I would have been overwhelmed with all that in one appt. Too much for my brain to handle.

I never had the mold test but I think its fairly obvious I cant tolerate mold.

I'm really surprised with your Igenix results. WOW!!

Your 31 band was a very strong positve...and then postive on the 23-25....those are two double starred bands...highly specific for Lyme disease.

The 41 could be postive from any bacteria having a flagella (tail)...not just Lyme. That one is pretty much always positive. As far as I know 58 isnt highly specific to Lyme....could cross react with other bacteria.

You definately have Lyme exposure...but its not totally bringing you down.....your CD57 was higher than mine. He was really happy about mine being a 78....geeeez....I guess he was expecting my number to be in the dumps....but I proved him wrong!

So I guess maybe for both of us the Lyme has made us very susceptible to the mercury and molds.

I'm sure theres a good chance your body isnt letting go of the metals right now. The candida itself could be a good indicator that mercury levels are high.

What test did you have for the heavy metals????

If you say urine challenge...I might have to punch you!!

Anyways....I thought you might have said hair analysis??

I had already had that done before I saw him....and yeah...my mercury levels were very low. I think it was before I even got all the metals out...I just wasnt excreting a darned thing...no wonder I'm so poisoned.

Sounds like you got alot of answers today though.

[AndreaB]

Heavy metals: my levels were actually pretty low. I said good...he said maybe not so much. He said what we all know already, that it CAN be that my levels are low, but it can also be that I am not mobilizing or excreting them, and that is bad. He said with my level of toxicity that it's probably more that I am not excreting them or mobilizing them well. My silver was high though.

Essential elements: basically the only one that was okay was vanadium. Everything else was out of whack. He especially wants to watch magnesium, copper, manganese, molybdenum, selenium and cobalt (which has to do with B12).

For my essential elements the doctor had Calcium, Magnesium, Zinc, Iodine, Lithium, Selenium, Sulfur and Cobalt marked.

My numbers were as follows for everything. Maybe you could list yours.

Calcium 248 Range 300-1200

Magnesium 20 Range 35-120

Sodium 36 Range 12-90

Potassium 50 Range 8-38

Copper 10 Range 12-35

Zinc 220 Range 140-220

Manganese .11 Range .15-.65

Chromium .36 Range .20-.40

Vanadium .070 Range .018-.065

Molybdenum .058 Range .028-.056

Boron .42 Range .30-2

Iodine .23 Range .25-1.3

Lithium <.0.004 Range .007-.023

Phosphorus 175 Range 160-250

Selenium .97 Range .95-1.7

Strontium .34 Range .50-7.6

Sulfur 49800 Range 44500-52000

Barium .07 Range .26-3

Cobalt B12 .003 Range .013-.050

Iron 9.2 Range 5.4-14

Germanium .031 Range .045-.065

Rubidium .036 Range .007-.096

Zirconium .013 Range .020-.42

For the toxic elements I had:

Aluminum 1.5 Range < 7.0

Antimony <.01 Range <.050

Arsenic .072 Range <.060

Beryllium <.01 Range <.020

Bismuth .010 Range <.10

Cadmium .085 Range <.10

Lead .22 Range<.10

Mercury .09 Range <1.1

Platinum <.003 Range <.005

Thallium <.001 Range <.010

Thorium <.001 Range <.005

Uranium .001 Range<.060

Nickel .06 Range <.40

Silver .02 Range <.15

Tin .07 Range <.30

Titanium .81 Range <1.0

I had these done March 06. I'll have to redo them once I get ready to have a challenge. My doctor like to do the hair analysis with the urine test.

[happygirl]

Ok, there are so many important things to comment on, and I am bound to forget something, but here goes:

Sweet M: I am so sorry that you are having a rought spot. Its sometimes even more frustrating that you can pinpoint it (the rice cakes). In general, how have you been feeling? Do you think you are improving? I think about you all the time as we live parallel lives . Forgive me for asking this-I don't remember-but were you tested for co-infections?

Rinne: I want a rinne bar. Seriously. Everytime someone mentions it.... I am so impressed that you have improved enough to tackle something this momentous!!! Does Rachelville or the Lyme Clan get a shout out on the wrapper?

Susie: So I'm a little late to offer the support, but I still wanted to let you know that we are ALL concerned about you. Take some time to think about what your best plan of attack is (how best to spend your $ and time), but don't wait too long. At the very least, I do think its worth having another PAP done. I'll guilt you into it.... I second Lynne's recommendation to go to a free clinic. You have to do what you have to do. That you stayed home I think illustrates that something is going on...don't know what, but something has you "off." Let us know what we can do to help...and please know that we all care deeply for you!!!

Carla: How are you feeling now? What day did your herx start? I think we are on similar schedules...delightful. .

Whatever happened with the shots and the pain that you had? (or did you post it and i don't know?!!!)

Lynne: Always good to see you on over here...or anywhere on the board... :)

Someone asked...rachel? andrea? about the C.D57 test. I have not had it done (her office mainly uses Quest, although they can send me out to a labcorp facility). I have conflicting thoughts on it....Seems to be indicative for some, and not for others...etc. If anything, I wish I had it run last fall when life sucked .

by the way, all the yard pictures have been beautiful. I've never had a yard of my own until we moved into our house now...and you all know with the way I feel that there is no way anything like that gets done! I am just so proud that Eric mows the lawn every weekend. I would live in a jungle of weeds if it weren't for him!!!!!

donna: well, it sounds like you had a good app't. I'm just happy you are seeing a good team of docs. i'd be interested to see what the people on lymenet say. The 23-25 band is very specific. it could also be that it is there, definitely, but your body is tired of fighting it so it isn't producing many antibodies (esp if you've had it for awhile). hugs to you . I really admire you for your persistence and your sweet spirit, through all of your struggles...and everyone else's .

hi to everone else...patti, bev, jin, rachel, andrea.... (sorry, I am cutting this short...am rather tired and a bit out of it).

real quick: I have an appt with the LLMD on Thursday. Any suggestions for things to ask/discuss? My results of my biopsies aren't due back til next week

[happygirl]

This is from the LDA's ABCs of Lyme brochure.

"Gastrointestinal Lyme

Martin D. Fried, MD

Director, Pediatric Gastroenterology and Nutrition

Assistant Program Director, Department of Pediatrics

Jersey Shore Medical Center, Neptune, NJ

Lyme disease has been reported in the gastrointestinal tract

of children and adolescents. Pediatric gastrointestinal Lyme

disease may present as abdominal pain, vomiting, diarrhea,

heartburn, blood in the stool, and it may mimic Crohn

[diamondheart]

There are days I'm just staggered with fatigue, and a feeling of the most intense heaviness, looking pasty and white and hollowed out (while gaining lots of weight). I had my annual PAP and "physical" just three weeks ago. PUll up a comfy chair and let me tell you about THAT.

I hate good docs gone bad !

I have intense abdominal and lower back pain almost constantly now, and I am tired beyond belief, sometimes barely getting through my days at work (3 x a week and only 7-hour shifts) and crawling into bed by 7 pm. People are actually telling me, on some days, that I don't look well. Work is a true test of stamina and an academy-award winning performance given by yours truly each time I'm there......not so easy. My face is often puffy and pale and I am very bloated - stomach very distended. Am gaining and gaining weight, despite eating a really healthy and balanced diet, low-carb, high protein, veggies and fruits.....still walking the dogs very vigorously nearly every day......only drinking about a bottle of wine a week - - I don't think THAT is too much. And through all of this - - there ARE days and moments - hours - when I feel okay and laugh and play and dance around the house with the Ipod.....they just seem so few.

Being tired all the time and crying a lot...could be that something is whacky with your thyroid. I think you have good intuition that something physiological is going on besides the brain chemistry stuff. It's all connected. When I was depressed a few years ago, I was crying 3 to 4 times a day. They, I finally decided to see my chiropractor and have him muscle test me. I needed iodine. The day I started taking it, I went from crying 3-4 times a day to once a day. It was that quick! Recently, I was feeling really tired, even after going on vacation and laying around doing nothing. I went back to that chiropractor and he put me on Thyrosol by Metagenics for my thyroid, but he thinks it's my adrenals that are affecting my thyroid. It's definitely helped with my energy levels. Weight gain also suggests a sluggish thyroid.

Your adrenals may be involved too. If your adrenals are out of balance, you won't be able to tolerate any alcohol. I think you should try giving up the wine and seeing if that helps too. Plus, if your intestines are still healing, the alcohol may be rough on them.

Also, don't forget that your brain needs glucose to operate, so you don't want to be too low on carbs. Maybe lower carbs is a better term, or healthy carbs.

SO! I have in my hand the lab sheet that my ridiculous doctor provided - I think she checked three boxes. Ha ha, I have begun to check as many boxes as I want. T3, T4 uptake, CBC w/ differential, Vit. B12, cholesterol.......

Can you guys think of anything else that might be going on? Any more boxes to check?

I think if you can afford it, get TSH, free T3 and T4 checked for the thyroid. Or, if you have a health care practitioner who can muscle test you, you can skip all the blood testing.

Keep walkin' those doggies!

Claire

[Rachel--24]

But.....on Thursday when I go in, I am going to find the first single guy with a dental plan, and ask him to marry me.

Yeah...I would do like Carla suggested..find the dentist and marry him...then you dont need to worry about dental plans at all!!

Heck...I gotta stop getting together with Safeway managers. I mean...wheres that gonna get me....wheres the bonus?? ...I cant even SHOP at Safeway.

Maybe I oughtta be more flirtacious while I'm picking up my 5 foods from WF.

right now I am going around the house picking up after her. We are going to go over the wilderness rules of "leave no trace" this evening.

Ha! My mom loved your wilderness rule of "leave no trace".

I think she might wanna implement this now.

I am so grateful for the love and support here.

Me too.

[Rachel--24]

I am just so proud that Eric mows the lawn every weekend. I would live in a jungle of weeds if it weren't for him!!!!!

Laura....there was a time when I was living in a jungle of weeds...whats even worse is that I didnt even CARE!

My yard was out of control....after I did all that work to landscape it I got too sick to actually maintain it.

When I got better I had to fix it up again. My poor yard....it either gets TONS of attention...or it gets totally neglected....depending on how poisoned I am.

[CarlaB]

Carla: How are you feeling now? What day did your herx start? I think we are on similar schedules...delightful. .

Whatever happened with the shots and the pain that you had? (or did you post it and i don't know?!!!)

I'm feeling better than during my herx, but not as good as during my break from meds. I guess that's normal. My local Lyme friend also felt good on her break, but she took a 3 week one ... as time went on, she started to feel bad again as the symptoms came back.

This morning my basal temp. was 98.9. considering that is supposed to be the lowest temp. of the day, that was HIGH. I've felt bad all day ... don't know what's going on, but my immune system seems to be working.

My bruise is finally getting lighter ... it's not tender anymore either. I'm not doing the shots anymore after the first one.

How are you doing now?

Oh, btw, my c diff tests were negative.

[rinne]

.....

I just wanna say again how happy I am that you're back. Rachelville missed you.

Aw shucks,

I've said it before, I really feel like much of my wellness comes from knowing this place.

I just want to add that I agree.

Now if we could only get Robbin back here more frequently.

Donna,

I don't remember if I commented on your dad's yard......Beautiful!!!

Yes, I miss Robbin and Floridian too.

Rinne--Tycoon, taifun--whatever you call it, you're gonna be one for sure. Have I told you how excited I am for you???

Yeah, I'm always turning my head cuz I think I see something and nothing is there, lol. Thought it was just me and my crazy body.

......

Oh gosh Mia, I'm so sorry...stupid rice cakes! If I feel bad, at least I want it to be from something really tasty.

I had that, it was like birds flitting at the corners of my eyes, I'd look and think, why would a bird be in the house? It has completely gone away.

I really have been to some cool places, haven't I, lol!?!

Definitely.

I would WELCOME a fatal illness......settle my affairs, rent a cabin in the Sierra and have friends and loved ones and dogs come stay, and fly slowly and peacefully up to the arms of my heavenly father.....

I've been to Fatalillnessville and it is not nearly as much fun as Rachelville. We love you just the way you are, please remember that.

Susie . . . . . . .

I think you need a physical. Go to a free clinic in your area. Tell them your dilemma and ask them if they can run the lyme and mercury tests, and ask them to test for a CMP18. While I was at it, I would ask them to test your DHEA, Estrogen and Testosterone. I would also ask them to run a B12. You would be surprised what pernicious anemia can do to you. I was literally exhausted all the time until they found out that my body had a malabsorption problem with B12. I'm on shots. Right now, I'm taking 1 cc/day -- I KNOW, IT'S A LOT -- had to get that out of the way -- but only doing that for a month to get my absorption up. Then I'll reduce to 3x/week, then 2x/week then 1x/week for the remainder.

I also would be very sad if you developed a fatal illness. I would miss you.

Please take care of you.

xoxoxoxoxoxoxoxo

Lynnie

Totally.

....

Okay all...my mind is mush and I've already forgotten half of what Dr. S said. I just know we're not starting any treatments for the next six weeks. These six weeks, we're going to try to get my body strong and able to handle the treatments. Basically, I am toxic, I've got imbalances in my mineral/vitamins, I've got mold exposure and have been exposed to lyme. He said that at some point in the future we might want to test for co-infections, but we'll wait for these six week.s

Forgive me...this will all be willy-nilly cuz while I was talking to him I dropped all my paperwork and everything is out of order.

First of all...CD57...Mine was 84. Not great he said, but not bad either.

My western blots showed past exposure to lyme, but not a present infection. Igenix shows my IgG as Positive, CDC is Negative. Here are the numbers:

IgM | IgG

18 - | -

22 - | -

23-25 IND | +

28 - | -

30 - | -

31 - | +++

34 - | -

39 - | -

41 IND | ++

45 - | -

58 - | +

66 - | -

73 - | -

83-93 - | -

The testing for molds showed that I have elevated levels of Penicillium notatum, Aspergillus furnigatus, and Stachybotrys chartarum. He wants me to get rid of my carpet. I really have needed to for years...I've lived here since 1988 and the carpet was already in at that point, plus I've had two dogs, and lots of birds, and well, there is most likely tons of mold under there. He wants me to put in hardwood. I asked if laminate flooring would be okay...basically he said "you'll react to everything, so go with the least reactive. Don't know how I'll afford it, but maybe I'll have to refinance my house...I hate to though because my payment is SUPER low.

The Spectracell test showed that I am very deficient in Coenzyme Q-10. I am also low in magnesium, glutathione and my antioxidant function was a bit low.

My thyroid antibodies were okay, so I do NOT have thyroiditis. Still he mentioned something about eventually maybe putting me on thyroid meds...not sure why.

Heavy metals: my levels were actually pretty low. I said good...he said maybe not so much. He said what we all know already, that it CAN be that my levels are low, but it can also be that I am not mobilizing or excreting them, and that is bad. He said with my level of toxicity that it's probably more that I am not excreting them or mobilizing them well. My silver was high though.

Essential elements: basically the only one that was okay was vanadium. Everything else was out of whack. He especially wants to watch magnesium, copper, manganese, molybdenum, selenium and cobalt (which has to do with B12).

So right now he wants me to concentrate on getting my digestive tract in good shape. He wants Anna to make sure my sulfer and methyl...?? pathways are clear and okay. He wants me to chew REALLY slowly...he said that is as good as taking digestive enzymes...maybe better. Over the next 6 weeks I'll be adding a bunch of supplements to my regime, one at a time. I've got 4 to start with. I'm starting with Lymphasol which is supposed to help clear the liver...and it's also supposed to help with sleep!!!!! So, that's where I'm starting, lol. He also wants me to start sooner rather than later with magnesium, glutathione (liquid), essential fatty acids, coQ10, [one which I can't read now, lol], lipoic acid, l-carnitine, NADH (he explained what this is and now I've forgotten).

Gee my posts aren't nearly as scientific as Rachel's are, lol. Before we started he asked how my memory was today, and all I said was, I guess we'll find out. I guess I know.

Wow.

[AndreaB]

real quick: I have an appt with the LLMD on Thursday. Any suggestions for things to ask/discuss? My results of my biopsies aren't due back til next week

I don't have any suggestions. I'm am happy to hear you'll get your biopsy results next week. Bummer about not being able to go over them tomorrow though.

Heck...I gotta stop getting together with Safeway managers. I mean...wheres that gonna get me....wheres the bonus?? ...I cant even SHOP at Safeway.

Maybe I oughtta be more flirtacious while I'm picking up my 5 foods from WF.

Yah, get away from Safeway managers. WF.... Don't know if that would be much better.

Oh, btw, my c diff tests were negative.

Yay!!!

[dlp252]

How did ART prioritize things for you?

Basically, he said Lyme...he saw metals and he said candida seemed under control, but as the primary thing he saw lyme which was affecting my thyroid. I emailed Scott my results and asked about follow up ART sessions so I think we'll do another one in June or July (probably July). He thought my results clearly showed lyme but was encouraged at the CD57 score. He also said I could fax him my metals/elements report to look at...he might have some input and he said he might learn something from them.

Dang Donna....thats alot to absorb!!

He ran alot of tests. I only had the Westerm Blots (and I had the results before my follow up appt.) and the vit/min deficiencies done. I would have been overwhelmed with all that in one appt. Too much for my brain to handle.

OMGosh...I kept looking around the room searching for a piece of paper. I had a handful of them in my hands. I just didn't want to write all over the test results. I KNEW I wouldn't remember half of what he was saying...I kept asking him to write stuff down...

I'm really surprised with your Igenix results. WOW!!

Your 31 band was a very strong positve...and then postive on the 23-25....those are two double starred bands...highly specific for Lyme disease.

The 41 could be postive from any bacteria having a flagella (tail)...not just Lyme. That one is pretty much always positive. As far as I know 58 isnt highly specific to Lyme....could cross react with other bacteria.

You definately have Lyme exposure...but its not totally bringing you down.....your CD57 was higher than mine. He was really happy about mine being a 78....geeeez....I guess he was expecting my number to be in the dumps....but I proved him wrong!

So I guess maybe for both of us the Lyme has made us very susceptible to the mercury and molds.

I'm a little shocked myself, lol. I was fully expecting the tests to not show ANYTHING! BUT I was hoping it was lyme...it sounds weird, but I really feel like I can recover from the lyme. I don't have that same feeling about mercury and mold.

What test did you have for the heavy metals????

If you say urine challenge...I might have to punch you!!

Anyways....I thought you might have said hair analysis??

No, you don't have to punch me. I did the hair analysis, but since I dye my hair I had to use the unmentionable hair. The test report even says that that isn't quite as accurate on some things.

Maybe you could list yours.

I'll list them tomorrow...I'm back from dinner and pretty lethargic. I had a gigantic steak and lots of green beans. I love Outback! You're levels looked really low...some of mine are high and I forget what he said about that, but high isn't any better than low...he said we want them right in the middle range and only vanadium was in the middle.

donna: well, it sounds like you had a good app't. I'm just happy you are seeing a good team of docs. i'd be interested to see what the people on lymenet say. The 23-25 band is very specific. it could also be that it is there, definitely, but your body is tired of fighting it so it isn't producing many antibodies (esp if you've had it for awhile). hugs to you. I really admire you for your persistence and your sweet spirit, through all of your struggles...and everyone else's.

Wow, thank you so much! Sending hugs right back to you!! So far only 1 response on lymenet...but I didn't really ask a question I guess. Lymetoo was the one who responded!

This is from the LDA's ABCs of Lyme brochure.

"Gastrointestinal Lyme

Martin D. Fried, MD

Director, Pediatric Gastroenterology and Nutrition

Assistant Program Director, Department of Pediatrics

Jersey Shore Medical Center, Neptune, NJ

Lyme disease has been reported in the gastrointestinal tract

of children and adolescents. Pediatric gastrointestinal Lyme

disease may present as abdominal pain, vomiting, diarrhea,

heartburn, blood in the stool, and it may mimic Crohn

[CarlaB]

Yah, get away from Safeway managers. WF.... Don't know if that would be much better.

Look for the single guys SHOPPING at WF ... they are the ones with the money. Not that money's everything ... but it will help pay for your wacky diet!

[AndreaB]

I'll list them tomorrow...I'm back from dinner and pretty lethargic. I had a gigantic steak and lots of green beans. I love Outback! You're levels looked really low...some of mine are high and I forget what he said about that, but high isn't any better than low...he said we want them right in the middle range and only vanadium was in the middle.

Glad you had a good dinner.

My doctor thinks mercury is a problem for me just based on my hair analysis. He likes to do the urine challenge though. He won't treat me until I get my essential elements where he likes them. He's found problems with chelation if your essential elements aren't on the higher side since chelation takes them along with other metals.

In my zeal for trying to get our budget under control ( ) I didn't budget any doctor visits. Will have to figure that out later. I already told him I was getting my teeth taken care of and that we wouldn't be able to do anything til next fall (as in 08). I also need to do the thermal test but won't have the funds for that either.

Having a gluten-free household is definately expensive. To top that off we started buying organic a couple months ago. If you can hit sales the prices aren't too bad. We may have to rethink that but we really don't want too.

[CarlaB]

OMGosh...I kept looking around the room searching for a piece of paper.

The nurse practitioner that I work with asks me right away if I have a piece of paper. Once I was driving in the car when she called me back and she wouldn't talk to me ... she wanted to talk to Chloe so she could write it down ... I pulled over ...

BUT I was hoping it was lyme...it sounds weird, but I really feel like I can recover from the lyme. I don't have that same feeling about mercury and mold.

Interesting ... I was happy the Lyme test was positive because I have answers, but at this point I still wonder to what extent I will recover. If I had to guess, I'd guess my C D 57 was pretty low ... but I really don't know for sure. I feel pretty disabled by this whole thing. I have to keep reminding myself that I've had symptoms almost my whole life, and that my whole life I've seemed pretty healthy compared to most people (now that's a different topic, huh?), so I can certainly at least get back to that, if not better.

At least I'm used to anti-candida, detoxing, etc. I've been doing this for years ... I think this will make the difference in the end.

but since I dye my hair I had to use the unmentionable hair.

Good thing I didn't have a drink in my mouth when I read that! I highlight/lowlight, but at the time I only highlighted, so the back underneath part had no color ... especially close to the roots.

Wow, this is interesting...most of my annoying lingering symptoms are in the GI tract.

Me, too ... that and fatigue ... well, and that my brain doesn't work right ... I have other symptoms, but those are the most annoying. Surprisingly, the pain doesn't bother me much ... it's there, it just doesn't annoy me as much.

[CarlaB]

To top that off we started buying organic a couple months ago. If you can hit sales the prices aren't too bad. We may have to rethink that but we really don't want too.

I have a history of buying some things organic and others not. For example, only organic grapes and raisins. Nuts I will buy either, but I buy them in bulk at Wild Oats.

With a large family, you have to compromise.

For myself, because I have such major health issues, I only buy organic, so for our family dinners, it's all organic now and it is quite a bit more expensive.

Prioritize ... you can't do it all. You're doing a great job with what you've got, Andrea.

[NoGluGirl]

Dear Mia,

I am so sorry to hear about your reaction! Rice cakes are HEINOUS! I hope your reaction goes away soon. That is such an unfair situation. It is difficult to deal with having sensitivities like these.

Dear Susan,

Man, are we in the same body? All of what you describe is what is wrong with me. I am either really ticked off, or really depressed part of the time. The irregular Paps are something I had as well. About a year and a half ago, I had abnormal results. It sucked. I was scared to death it was Cancer. Last time, though, my results were fine, and the time before were, too. However, the yeast is likely the culprit there.

The financial strain is something else we share. I am too ill to work a regular job. I am too tired and sick. So, affording medical care is pretty much impossible. My parents seem convinced at least half of the time that I am not really sick. I hate being stuck here. I am trying to get my own business going, but I was defrauded by a Technology company and that took a lot of my money. I now owe over $108 in overdraft fees due to their removing amounts of money they should not have tried to remove. That is on top of the medical bills I need to pay off. It feels like I am cursed. Things just keep popping up. It is enough to make you go crazy. There is so much testing I need, and no money.

Dental issues are yet another problem I have, too. I may have Lyme, and getting the root canals may be a mistake. However, I could lose my teeth and have cavitations. That is another problem. The severe TMJ has made it so my jaw hurts all the time off and on. My teeth keep chipping off. I never had trouble with my teeth until a few years ago! What the heck is going on?

I know my Thyroid is off again. I have a knot in my neck the size of a golf ball. That means it is hyper. My heart feels like it is going to pound out of my chest. I do not have the money for that test, either. It is impossible not to get down and anxious about these circumstances. But, by God, I have survived gallbladder disease, gallbladder surgery, Celiac, horrifying medical testing experiences, Hell, I am more resillient than a cockroach! And they can survive nuclear blasts! Although I have contemplated suicide, I know it is only because I want the suffering to end, not life. I love life! I know I will never have the life I always wanted if I do not wait it out. I am terrified I will die of whatever is wrong, really. However, by talking to Rachel and Carla, I have hope now that there is an answer, and a treatment.

I believe you and I both have Lyme, mercury poisoning, and Candida. I know for certain I have the Candida. We can make it! If it were not for the loving individuals on this forum, I would feel like I am all by myself. I know I have finally found a place where I belong. That place is Rachelville.

Dear Donna,

Wow! The top of a temple! In Guatemala, too! I am scared of heights! That would not work for me! That mold is bad news! I was horrified when I read about those molds! They are all toxic! I know someone who lost a kidney being exposed to the two of the three you listed! Get rid of that carpet! I bet we have toxic mold, too. Our basement seems to have it creeping in, but we have not been able to locate it or anything.

It was encouraging to hear about your test results! I am so happy the doctor seems to have a good idea of what to do for you! Most of us have not had that luxury. So many ignore important issues. It is great to know there is one doctor out there who does know what to do.

Dear Claire,

Nice to see you! How are you? It sounds like you have been busy. I have, too. School, my business, and other things definitely make me active. I wish I had more energy to do more, though.

Dear Laura,

Howdy! Thanks for the info you posted. There is a man on here that has those gastro symptoms and was diagnosed with Crohn's. I think he could have Lyme, too. Someone else already mentioned it to him. His name is Walter.

Dear Carla,

That is wonderful news! No C. Diff! I bet you were relieved to hear that! It is a nasty bug.

They had that on Grey's Anatomy the other day. C. Diff is the most common cause of post-op diarrhea and can cause sepsis if not treated.

Sincerely,

NoGluGirl