Omg...i Might Be On To Something

[CarlaB]

I already said, I refuse to accept I am stubborn

(erm that's meant to be irony)

You referred to it before as "my stubborness", which is even crazier.

Noglugirl, sorry, I don't know anything about Lupus.

[gfp]

You referred to it before as "my stubborness", which is even crazier.

Noglugirl, sorry, I don't know anything about Lupus.

It was an allusion to Oscar Wilde and I thought maybe some people didn't get it...

[CarlaB]

It was an allusion to Oscar Wilde and I thought maybe some people didn't get it...

I don't know about Oscar Wilde, but I got it.

[AndreaB]

Noglugirl,

I have no clue about lupus either. I think aspartate can make things worse with it.

[gfp]

I don't know about Oscar Wilde, but I got it.

I have nothing to declare but my genius

Supposedly said by Oscar Wilde at Customs Control in New York, 1882.

but I guess if asked about stubborness he might have said "I refuse to acknowledge my stuborness"

[CarlaB]

I got back two of my tests.

My cortisol/adrenal test came back normal. Yay!

My heavy metals came back marginally positive for mercury -- supposed to be under 4, mine was 4.1. BUT it came back high for LEAD . I do live in an old house, but I haven't been chewing on the baseboards or windowsills, so where the heck did the lead come from??? The doctor will be addressing the lead the next appt., they said it was no hurry and my appt. is next week (by phone).

[AndreaB]

BUT it came back high for LEAD . I do live in an old house, but I haven't been chewing on the baseboards or windowsills, so where the heck did the lead come from???

Isn't the old paint lead based? That could make a difference. Have you redone paint?

[Rachel--24]

Dear Rachelville Residents,

I was tested for lupus many years ago. I am scared that I could still have it. Is it possible the test results from a while back were wrong? I get the butterfly (malar) rash on my face! I am scared.

Sincerely,

NoGluGirl

NoGluGirl,

I'm really concerned that something is going on with you which will only progress over time if you dont start getting some tests done to identify and treat the problem.

There is definately something wrong...I cant say whether or not its Lupus....just that you need proper medical testing.

I stand by my belief... that the researchers and scientists know what they are talking about when they say that autoimmune disease is caused by bacteria, virus, fungi and other "invaders".

I have never set out to research Lupus specifically....I was tested for it early on and was negative. So far I'm not turning up with anything else autoimmune (thankfully)....Graves Disease was the only one. This is one reason I am aggressively seeking answers to the problem before new autoimmune diseases appear....and I have no doubt they will given enough time.

Even though I havent researched Lupus I've seen reference of it in everything that I have researched. It is mentioned everywhere that Lyme is mentioned....also mentioned with regards to candida/fungal infections, virus, mercury toxicty, etc. These are some of the things which are present in the body when autoimmune disease occurs....so naturally Lupus and some of the other more prevalent autoimmune disease are always discussed when there are infections in the body.....thyroid disease is probably #1.

If I were in your shoes right now...the first thing I would do is get tested for Lupus. Regardless of whether or not the test comes back positive my next step would be to look into which infections I have. You already know that you have Candida issues. You would not have this problem if your immune system were strong enough to fight it....its opportunistic....its there because your immune system is weakened by *something*. I would want to know what that something is.

The last thing I would do is ignore this and let things progress even further. I would not do this. Its your body....you need to fight to reclaim it.

Scientificness abounds when it comes to Lupus and infections....

I am singling out Lyme in my post but it doesnt have to be Lyme...other infections are capable of triggering autoimmune disease as well.

Read this....

Definite Lyme disease instead of lupus:

"Following a long-standing, untreated chronic borreliosis, I, too, eventually developed anti DS-DNA antibodies and a positive ANA, along with other markers for Lupus. However, the late Paul Lavoie had numerous patients with similar laboratory results, all of which returned to normal or significantly improved with long-term antibiotic therapy. He firmly believed that in some people, the Lupus or Lupus-type syndrome was a reaction to the underlying Lyme disease infection. By treating the Lyme disease infection, the auto-immune attack often backs off. In fact, he had numerous patients in which that exact thing happened as a result of long-term antibiotic therapy.

I am one of those patients. While being treated with anti-inflammatory medications, etc. for a condition "highly suggestive of systemic lupus erythematosis" by a rheumatologist, my auto-immune laboratory tests continued to go higher and higher. After seeing Dr. Lavoie and undergoing long-term antibiotic therapy (initially with no other change in therapy) all the Lupus tests gradually improved, directly paralleling the administration of antibiotics.

It was touch and go for awhile handling the side effects of the antibiotic therapy; trying to determine if the flare in symptoms was a "Lupus flare" resulting from the antibiotics (many Lupus patients attest to this occurence) or a herxheimer-like response from dealing with the Lyme disease infection.

The bottom line is that because of his compassionate therapy, individualized to my needs, I improved tremendously, all the Lupus laboratory tests returned to 100% NORMAL, and I have returned to a reasonably productive life (not cured; still experiencing symptoms on a much milder level) without any medications other than an occasional ibuprofen for almost 3 years now."

There are sooooo many stories like this. The info. is out there for those who seek it. I am not one to just sit back and let my body attack itself. My mind has always told me that this is not natural. Our immune systems are designed specifically to protect us from bacteria and virus. The immune system is powerful and complex....it doesnt just get bored one day and start attacking the body it was designed to protect. There is something present in the body....which is setting off the immune system. The immune system is attacking an invader which is hiding within our tissue.

WHEN TO SUSPECT LYME DISEASE

By John D. Bleiweiss (deceased), MD Trenton, NJ. 4/94

"Prior to proper diagnosis, patients habitually report that they were assigned the following diagnoses most often: Chronic Fatigue Syndrome, Multiple Sclerosis, Fibromyalgia, Lupus, Candidiasis, Chronic Mononucleosis, Hypoglycemia and Stress-related illness. If these appear in a differential diagnosis, then Lyme Disease (LD) should also be considered."

...

"[For Lyme disease] Very often, the pinna and ear lobes are varying shades of red. Less commonly, a similar erythema can be observed on the hands or malar (upper cheeks) areas. A malar rash is not pathognomonic of Lupus, if in fact SLE is distinct from LD (Abstract 55A, V LD Symposium)."

...

"Dr. Lavoie [also has died]has published the coincident findings of LD with RA, and SLE (lupus) with LD. The SLE was associated with positive DS-DNA (double stranded DNA) which is considered diagnositic for lupus. This marker improved with antibiotic treatment for the LD. The author felt that the LD might be causing/aggravating the SLE."

"I know of several people with Lyme who were intitally diagnosed with Lupus due to their elevated ANA count... my ANA was elevated at one point during my treatment and I also early on had the Lupus "butterfly" rash across my face ..."

Lyme disease can mimic many other real illnesses, such as arthritis, Alzheimer's, fibromyalgia, lupus, chronic fatigue, mononucleosis, multiple sclerosis, etc. Unless a physician has accurate, up-to-date information, it is very likely they will miss Lyme. If they have not used IgeneX laboratory to do the testing, which is never at a routine local lab, any Lyme testing done was junk.

Much to my surprise, lab results and clinical symptoms which I was taught to believe showed arthritis, Alzheimer's, fibromyalgia, lupus, chronic fatigue, mononucleosis and multiple sclerosis, I am finding in very clearly diagnosed Lyme patients. Patients then improve with aggressive antibiotic treatment. Do you understand? These illnesses are not supposed to improve with Lyme killing antibiotics! It has stunned me to see this at times. This misdiagnosis problem is routinely and relentlessly committed by physicians who are much smarter than me and work at big name hospitals all over the US.

If I had a dollar for every person who has said to me, "James, I know you mean well, but you just need to understand. I was treated at the prestigious Super Big Name Hospital by the head physician whose name is Dr. Superman, who is regarded as the great deity of my illness all over the galaxy. Of course if I had Lyme this great man of medicine could never have missed it."

Guess what, I know people that have buried loved ones and become profoundly ill who have said this to me. Even great doctors can have blind spots big enough to drive a hummer through. And I have found illnesses and created new treatments that they have missed. Sincerity does not equal thoroughness.

Bluntly, since Lyme is the number one vector illness in the US, all of these disorders should probably only be considered after a clear negative result from IgeneX Laboratories in which the Jones Western Blot criteria are used.

LYME MISDIAGNOSED AS LUPUS: IT HAPPENS EVERY DAY

Title: The Pathologist's View of Lyme disease

"Lyme arthritis is FREQUENTLY mistaken clinically for rheumatoid arthritis, systemic lupus erythematous, or Reiter's syndrome. Synovial biopsies are probably the most frequent tissue examined microscopically from patients with Lyme disease. The histopathological spectrum ranges from chronic hyperplastic synovitis with effusions to erosive ostearthritis. (20)... "The disease captures the imagination of physicians, especially in endemic areas such as Wisconsin. Lyme disease is a multisystem disorder with protean manifestations ..."

Sorry for the long post....I could probably go on all day about this...

I am not saying you have Lyme...just saying that you need to get tested for these things to determine what you do have. I would get tested for Lupus and get tested for Lyme through Igenix....thats exactly where I would start with this.

[CarlaB]

Isn't the old paint lead based? That could make a difference. Have you redone paint?

The old paint is leadbased. The people before us stripped most of the window frames, we had the windows replaced (the old frames are still there). Everything is painted over with non-lead based paint and there is no chipping paint anywhere. So, it shouldn't be the paint.

That being said, after I googled where you can get lead, one thing they mentioned was household dust. I would assume it would have to be in an old house like ours. We had the HVAC and all the ductwork redone over the summer. When the ductwork fell from the ceiling on the basement and hit the floor, dust came up to the first floor through the vents. At the same time we had the wood floors torn out and replaced (they weren't salvageable). That created even more dust, but probably no lead in the wood dust. I actually had to clean the walls with a rag and a bucket. I had to change the water about every five to ten feet the walls were so dusty, as was everything else (fortunately the house was vacant at the time). I never thought I'd get it clean!! I'd bet the inches of dust in the ductwork had some old paint/lead in it.

Now, I'd say the house is not dangerous from a lead standpoint. The "old dust" is gone ... the dust created when the paint was being stipped and scraped. But I don't know if that exposure was enough to give me this level of lead????

Our plumbing is new, the previous owners changed it out, plus we have RO purifying system. But, who knows how old the pipes are underground ... could they have lead? I've only lived here since June ... but we lived in this same house 2002-2003 school year.

I'm wondering if it's not exposure from sometime in the past.

I still find it strange ... I'd never have guessed lead.

[CarlaB]

I am not saying you have Lyme...just saying that you need to get tested for these things to determine what you do have. I would get tested for Lupus and get tested for Lyme through Igenix....thats exactly where I would start with this.

I agree completely. I think Lyme is far more epidemic than people think. Not that everyone has it, of course, but it's bigger than the CDC lets on .... and they KNOW IT!!

[Rachel--24]

My heavy metals came back marginally positive for mercury -- supposed to be under 4, mine was 4.1. BUT it came back high for LEAD . I do live in an old house, but I haven't been chewing on the baseboards or windowsills, so where the heck did the lead come from??? The doctor will be addressing the lead the next appt., they said it was no hurry and my appt. is next week (by phone).

Carla,

Were you able to read that interview with Dr. Derksen?? In the interview she states that in Lyme patients heavy metals are a significant issue. Most commonly found are mercury, lead and aluminum.

Its not that we have to be munching on these metals to have problems with them...the metals are present everywhere in our environment. With Lyme you are more susceptible to developing problems due to higher toxicity levels, stress on the liver, impaired detox, etc. I dont think its something that you can really prevent when you've got an infection like Lyme for several years....undiagnosed.

Its the same with the mold/fungal issues....with a strong immune system and a healthy body (without impaired detoxification.)..these things just dont become such an issue. Once you get an infection like Lyme....these things can wreak havoc.

Oh...in the interview when asked about mold and fungal issues with Lyme she said "Yes, very much so. They are especially an issue along the West Coast, including California."

Is it more moldy over here?? Is this why I'm having such major mold/fungus issues??

[Rachel--24]

I just had to re-post this.....seperate.....because it stood out to me....made me laugh ....and its Oh ..so true!!!

If I had a dollar for every person who has said to me, "James, I know you mean well, but you just need to understand. I was treated at the prestigious Super Big Name Hospital by the head physician whose name is Dr. Superman, who is regarded as the great deity of my illness all over the galaxy. Of course if I had Lyme this great man of medicine could never have missed it."

Guess what, I know people that have buried loved ones and become profoundly ill who have said this to me. Even great doctors can have blind spots big enough to drive a hummer through. And I have found illnesses and created new treatments that they have missed. Sincerity does not equal thoroughness.

Yeah...YOU GO JAMES!!!! Whoever you are...

[Rachel--24]

OMG....

Miamia...I just came back to post if anyone has seen you or heard from you.....I was worried.

Was gonna put out an APB.

Anyways.....I seee you.

Are you off the antibiotics yet? How are you feeling?

[AndreaB]

Rachel,

You feel like you're the only one posting?

How'd bioset go last night?

[Rachel--24]

Anyway, these moles are not being trained very well. Even with the special large print books and it suddenly hit me I had French moles and was writing in English so obviously they didn't understand a word ...

Meanwhile the recycling piles of loo-roll are growing... keeping with my environmental principles I figured we could just get some dung beetles in to recycle them but the damned moles ate them all. The ringleader has been caught though and grounded!

ROFL....

And he does have a sense of humor!!!!!

That is hilarious Steve! You are definately qualified for your position in Rachelville.

Yup....no more worrying about sewage problems.....we've got a scientist looking over the loos!!

Seems like the moles are causing alot of problems though?? I trust you will deal with them appropriately.

[CarlaB]

Rachel, I didn't read the interview. I don't remember if I couldn't get to it, or if I just couldn't read it. I have trouble with reading paragraphs that are more than a couple lines long ... it takes a lot of concentration ... my brain's messed up.

I did know that heavy metals were a problem for Lyme patients. I've always used aluminum foil for cooking ... sometimes I make individual meals wrapped in foil for dinner, it makes the flavors mingle and tastes GREAT ... but aluminum was so low it didn't even register. It was in my hair analysis, which probably means I am able to detox it.

The mercury is probably from the fish. I like sushi.

I guess the lead is just from the environment ... seems like there's less and less of it (paint, gasoline, etc.). Maybe I've just dropped that metal wrapper from the wine bottle into the wine one too many times.

[CarlaB]

Oh...in the interview when asked about mold and fungal issues with Lyme she said "Yes, very much so. They are especially an issue along the West Coast, including California."

Is it more moldy over here?? Is this why I'm having such major mold/fungus issues??

I can't imagine you are moldier than here ... we get lots of rain. I wonder if it has to do with the strain of Lyme?

[NoGluGirl]

I got back two of my tests.

My cortisol/adrenal test came back normal. Yay!

My heavy metals came back marginally positive for mercury -- supposed to be under 4, mine was 4.1. BUT it came back high for LEAD . I do live in an old house, but I haven't been chewing on the baseboards or windowsills, so where the heck did the lead come from??? The doctor will be addressing the lead the next appt., they said it was no hurry and my appt. is next week (by phone).

Dear CarlaB,

If you touch any of the walls that have the lead paint on it, you can absorb it. We often forget to wash our hands enough! There are some places (one neighborhood locally in fact) that had lead leaching in their pipes from the ground. If you bathe in that water, it could have caused it. You skin is the largest organ of your body. It absorbs things through the pores. Another possible source of lead is linoleum, because it is treated with it. Wear socks if your floors are wooden! Lead also has been found in numerous mainstream cosmetics, as well as candle wicks (to test them, all you do is light the candle, then hold a glass over it, and if it turns black with soot within a few minutes or sooner, you know) plus dental fillings.

Sincerely,

NoGluGirl

[Rachel--24]

You feel like you're the only one posting?

Ummm...yeah....probably cuz I am the only one posting!

Sometimes there's just no stopping me....not even the fact that I'm all alone....the "lone poster".

OMG....

BioSET...How could I forget this??!

Yeah....I went Wednesday and Thursday.

I didnt see Anna.....I saw Denise and then Susan last night.

So they always use different "filters" when we test various things. I was never clear on what this meant. In fact I had no idea about what purpose these "filters" have in the testing.

So on Wednesday she used a specific "filter" (maybe Lyme?) and there were various vials in the panel. I only reacted to two of the vials in the panel....they were "Candida/dysbiosis" and "Food Allergies". There was a third vial in the panel which was "iffy"....she had me go back to it a few times but it turned out OK. It was "Candida/infection".

So there were many things in the panel.....I recall seeing "Bacteria/Dysbiosis"....but this was not a problem for me.

She said we would save the "Candida/Dysbiosis" for another day and that night we focused on the Food Allergies. Basically the Candida vial was specific for Candida overgrowth in the small intestine....the food allergies were probably related to that.

So we went over all of the foods again...which takes alot of time and I got really tired. I reacted to all the foods. Yeah...what else is new? It was well over 90% of the foods. She mentioned I was ok with turkey, rhubarb and turnip. WOO-HOO.

I'm sure there were a few others I was ok with...but it doesnt matter....like I told her..."Sure...they're ok until I eat them a couple times." This is pretty much the nature of leaky gut....I just dont really worry about the foods anymore since I know I'll react to everything and theres not much I can do about it right now. I suspect it will get better once I start treating mold/fungal issues and heavy metals.

Anyway....it took forever to go through the foods. She said she could actually *feel* my bodys resistance to the foods. She was having to press real hard into my hand to get a response....she said it was like my body was retracting from the foods and my energy was going way down.

Yeah....my body obviously hates all food right now.

Stupid fungus.

I LOVE food...and I wanna eat EVERYTHING.....and one day I WILL!!!

Ooops....sorry for my outburst.

Anyways all of the foods were tested on the computer so there were no vials...except the ones that are necessary for the treatment....like the "food allergy" vial and the one that is "mine" with my own blood in it.

When I had to "brain test" she was saying "OK.....this is ALOT of information.....lets see if you can hold it all." Yeah...everything that we went through on the computer is "imprinted" into a vial.....it really was ALOT of information.

When I was ready to go in the room she told me to just hold onto the vials. I was like "Dont I need a glass??"

She said "Nope...they're yours...just hold them." I was holding only like 4 vials and thinking about all the info. which I was holding in my hand....and still wanting to really understand how it all works.

They got my digestive enzymes in....the pancreas ones from pig....since I cant tolerate plant based enzymes.

Anna had her test me for them....there were two different kinds although they werent clear as to what was different about them. Anyways....one seemed to be ok...and the other definately wasnt.

They had put the enzymes in vials and were using them for testing so they actually didnt have any there for me to take home. She gave me like 4 to try out and shes gonna order more but thought I should try it first. I havent tried yet cuz I'm scared.

______________________________________

So last night Anna left instructions for Susan to do the "Candida/Dysbiosis".

She pulled out all the panels for mycotoxins, pathogenic molds and yeasts...and all that fungus stuff again. These are the panels that I always have the most problems with.

So she says that we're gonna go through all these panels again but using the Candida "filter".

I wanted to know what the heck this means??

So I ask her what does the filter do?? So she answers "It filters stuff".

Ummmm....OK.

So I start touching the vials and then I stop....cuz I really want to understand about the filters!!

So I say "I don't get it?? What does the Candida "filter" do???"

So then she explained it.....the filter means that everything not having to do with Candida gets filtered out and the only things that will show up will be the things that are directly feeding the overgrowth....the stuff that is working with Candida, making it stronger, etc.

So even though I've gone through the mold/yeast panels a few times already they were focusing on different issues. The last time I went through the molds and mycotoxins Anna used the Lyme filter and was checking for cross reactivity with Lyme. On that specific test....all of the molds/mycotoxins were showing up as cross reactive with Lyme.

So last night it was "detailed" for Candida. There wasnt ALOT that showed up (in comparison with previous treatments) but after going through 3 panels I had enough to fill up one glass.

I was totally focusing on the vials....reading all of them. The molds/mycotoxins have so many species....most I dont recognize. Some of the more "well-known" ones I generally have issues with and I pin-point them and then get all excited saying "I knew it!!"

I knew I would react to Alflatoxin for sure...and I did. Also Patulin (which is a mycotxin found in apples). There were a few others I pin-pointed. Also on the pathogenic molds and yeasts panel I was able to identify some of the problems. Aspergillus Fumigatus, Candida Albicans and some other species of both Aspergillus and Candida. There were others that I didnt recognize...dont know what the heck they were.

So anyways...these are all things affecting the Candida gut problem....helping it.

I think that because everything is so intertwined right now the treatments cant possibly make a "noticeable" difference. I dont go there with the impression that I'm going to "recover" from the treatments alone. At this point I mainly go there for the testing....to keep digging deeper and narrowing in on the real issues. Also the testing for supplements, meds and stuff like that.

When the actual infections are verified through the bloodwork and I get on the appropriate treatment....I think at that point things will really start improving. Also, with the testing and treatment of heavy metals....I think once my Dr. starts focusing on that there will be better days ahead.

I'm gonna see my Dr. next Friday. Its been 5 weeks since I've seen him and I finally have more answers thanks to Anna and Scott. I think my Dr. will be happy that the mold/fungal problem was identified. I wonder what he will say about Lyme not showing up in ART though??

Interestingly, last night when she checked organs and body systems affected by the mold/mycotoxin/candida stuff working together...fibroid showed up again. The only other time it showed up was on the wheat/gluten panel.

I *do* notice that whenever I eat the moldy type foods or any food that gives me a reaction (as if it had mold)....like the veggies I try to add in....I'm getting that "ovary pain" again.

I never had it a single time in the few months that I stuck to my 5 "safe" foods.....but recently when trying to add in "better choices"....I have problems again....including this stupid pain.

I dont know if it might have been caused by my eating oats though.

I only ate them for 2 weeks and have since stopped. I know I was having mold issues with the oats so I cant say whether gluten was also contributing??

Anyways when the fibroid was seen on ultrasound they said it was on my uterus. The pain I get is in my pelvic area...down low and mostly on the right side but sometimes on the left. So if it were my fibroid (which is on my uterus) where would the pain be??

I am so not good at anatomy.

[NoGluGirl]

NoGluGirl,

I'm really concerned that something is going on with you which will only progress over time if you dont start getting some tests done to identify and treat the problem.

There is definately something wrong...I cant say whether or not its Lupus....just that you need proper medical testing.

I stand by my belief... that the researchers and scientists know what they are talking about when they say that autoimmune disease is caused by bacteria, virus, fungi and other "invaders".

I have never set out to research Lupus specifically....I was tested for it early on and was negative. So far I'm not turning up with anything else autoimmune (thankfully)....Graves Disease was the only one. This is one reason I am aggressively seeking answers to the problem before new autoimmune diseases appear....and I have no doubt they will given enough time.

Even though I havent researched Lupus I've seen reference of it in everything that I have researched. It is mentioned everywhere that Lyme is mentioned....also mentioned with regards to candida/fungal infections, virus, mercury toxicty, etc. These are some of the things which are present in the body when autoimmune disease occurs....so naturally Lupus and some of the other more prevalent autoimmune disease are always discussed when there are infections in the body.....thyroid disease is probably #1.

If I were in your shoes right now...the first thing I would do is get tested for Lupus. Regardless of whether or not the test comes back positive my next step would be to look into which infections I have. You already know that you have Candida issues. You would not have this problem if your immune system were strong enough to fight it....its opportunistic....its there because your immune system is weakened by *something*. I would want to know what that something is.

The last thing I would do is ignore this and let things progress even further. I would not do this. Its your body....you need to fight to reclaim it.

Scientificness abounds when it comes to Lupus and infections....

I am singling out Lyme in my post but it doesnt have to be Lyme...other infections are capable of triggering autoimmune disease as well.

Read this....

There are sooooo many stories like this. The info. is out there for those who seek it. I am not one to just sit back and let my body attack itself. My mind has always told me that this is not natural. Our immune systems are designed specifically to protect us from bacteria and virus. The immune system is powerful and complex....it doesnt just get bored one day and start attacking the body it was designed to protect. There is something present in the body....which is setting off the immune system. The immune system is attacking an invader which is hiding within our tissue.

Sorry for the long post....I could probably go on all day about this...

I am not saying you have Lyme...just saying that you need to get tested for these things to determine what you do have. I would get tested for Lupus and get tested for Lyme through Igenix....thats exactly where I would start with this.

Dear Rachel,

I still have the problem of no insurance for testing. I appreciate all of the info. I know I cannot remember ever being bitten by a tick, but I did go back in the woods as a teenager. The sleep disturbances could be caused by this, I know. Since I was about 17, my body has been on swing shift. One week I will sleep at normal times, but within a couple of weeks, I will be up at odd hours, then go toward yet another sleeping schedule. Melotonin and sleep aids did not help. I was tested for lupus, but this was years ago. They came back negative, though. So, Lyme tends to be more likely. My parents argue they never found any ticks on me. I told them, that does not matter. I also have had hot flashes. My heart palpitates all the time. It scares me. I feel weird all over. It is like halfway between passing out and consciousness sometimes. I just do not know how I am going to be able to afford these tests. Regardless, I am going to check out the Igenix site. I wonder if late Lyme causes nausea. I was feeling so much better for a couple of months or so, then after those antibiotics, I felt worse. I have not recovered much, either. That was in November. Could it be die-off? I was taking Flagyl and that happens to a lot of people. We discussed that before on here.

Sincerely,

NoGluGirl

[Rachel--24]

Rachel, I didn't read the interview. I don't remember if I couldn't get to it, or if I just couldn't read it. I have trouble with reading paragraphs that are more than a couple lines long ... it takes a lot of concentration ... my brain's messed up.

Carla....yeah....my brains messed up too. It might not seem like it when I'm getting all scientific on you guys...but yeah....balancing my checkbook is still a very scary task for me. I get really messed up with numbers...more so than with words.

I cant figure out simple math right now....at work if I'm faced with this....I simply just make stuff up.

I really dont have time to sit there trying to add or subtract (and looking stupid in the process) so I just dont do it....I give the customer something "close" to the right amount. If I actually got it "right" I'd be pretty amazed.

Anyways....these are the questions that were asked in the interview and if you want to see the Dr.'s response to any of these questions let me know and I'll post it.

(and this goes for anyone who's interested)

1. Tell us a little bit about your background.

2. What led you to alternative medicine?

3. What is ART?

4. How is ART used to help guide patient diagnosis and treatment?

5. What co-infections are most commonly found in people with Lyme Disease?

6. How prevalent are parasites in your opinion?

7. What are the more common parasites that you observe?

8. Do you see heavy metals as a complicating factor? Which metals appear most frequently?

9. Are mold and fungal issues common?

10. What are some of the more useful treatment options?

11. What are the more common parasitic treatment options?

12. What options are useful for dealing with metals?

13. How do you address fungal/mold issues?

14. Is there value in the Salt/C protocol and if so, what is the likely mechanism of action?

15. What about concerns over high blood pressure while on Salt/C?

16. Is the sequencing of treatment important?

17. What place do antibiotics have in the treatment of Lyme Disease?

18. How does Lyme Disease impact the thyroid?

19. What are the more common organs that you find are stressed when doing ART?

20. What are the more useful diagnosic tests that you employ?

21. What dietary considerations are key for someone with Lyme Disease?

22. How important is exercise in recovering from chronic Lyme Disease?

23. What are some of the commonly overlooked factors in treatment?

24. What significance do neurotoxins have relevant to the infections themselves in terms of one's overall symptom picture?

25. What role does hypercoagulation play in Lyme Disease?

26. What are some of the more critical supplements that someone with Lyme Disease should consider?

27. Do patients get well?

28. What does "cure" mean in your mind when it comes to Lyme Disease? Can one "forget" about this disease after they are well?

I will start with posting the answer to #27 "Do patients get well?"

Patients definately start to feel better. Symptoms can dramatically improve with treatment. You can become asymptomatic and live a normal, productive, healthful and happy life.

[diamondheart]

I got back two of my tests.

My cortisol/adrenal test came back normal. Yay!

My heavy metals came back marginally positive for mercury -- supposed to be under 4, mine was 4.1. BUT it came back high for LEAD . I do live in an old house, but I haven't been chewing on the baseboards or windowsills, so where the heck did the lead come from??? The doctor will be addressing the lead the next appt., they said it was no hurry and my appt. is next week (by phone).

Carla, yeah for normal adrenals ! I think that's a miracle for an American . We live such crazy stressed lives.

Booh for lead . I know someone who was really sick with lead poisoning. I think she used to live in an old house too. You can get your water tested for lead. A friend of mine used to do environmental testing in houses for mold and metals. You can look up in the yellow pages for companies who do this kind of testing. I think look under "environmental". That way, you can hunt down any current sources of lead that might be poisoning you.

Maybe I've just dropped that metal wrapper from the wine bottle into the wine one too many times.

The old wine bottles had lead in the metal wrappers. They are now made out of aluminum.

Anyways when the fibroid was seen on ultrasound they said it was on my uterus. The pain I get is in my pelvic area...down low and mostly on the right side but sometimes on the left. So if it were my fibroid (which is on my uterus) where would the pain be??

I am so not good at anatomy.

Hi Rachel, All uterine fibroids are in your uterus. Did they say which part of your uterus? Fundus means the top of your uterus. They also describe anterior (front) and posterior (back). Also, there are different areas of your uterus where your fibroid could be:

1) Subserosal: these are on the outside of your uterus, usually just underneath the outer lining.

2) Submucosal: these are in the lining of the inside of your uterus or just under it.

3) Then there are the ones that are in the middle of your uterine wall. I forget the term for those. I think the term is intramural.

4) Penunculated: These hang off a stalk. They can be either on the inside or outside of your uterus.

You can get all this information from your ultrasound analysis. Ask your doctor for a copy.

I get pains in my ovaries when I'm close to ovulation. I can tell which ovary is ovulating based on which side the pain is on. I'm wondering if you are feeling that also? I used to have pain from my fibroid that was anterior, but it was pretty mild. Of course, they are all gone now. The weird thing is that I never felt anything from my largest fibroid which was in the back of my uterus. The docs were baffled .

I also have had hot flashes. My heart palpitates all the time. It scares me. I feel weird all over. It is like halfway between passing out and consciousness sometimes. I just do not know how I am going to be able to afford these tests. Regardless, I am going to check out the Igenix site. I wonder if late Lyme causes nausea. I was feeling so much better for a couple of months or so, then after those antibiotics, I felt worse. I have not recovered much, either. That was in November. Could it be die-off? I was taking Flagyl and that happens to a lot of people. We discussed that before on here.

Sincerely,

NoGluGirl

Hi NoGluGirl, I think you should check out some other testing before the Lyme. I think you have bigger fish to fry than Lyme. The fact that you are having hot flashes means that your hormones are seriously out of whack. Someone your age shouldn't be having hot flashes. Hormonal imbalance can screw up everything from your adrenal glands to your thyroid. When your hormones are out of whack, you will feel crappy. I hope you have stopped getting those hormone shots.

As for the heart palpitations, these could be a symptom of your adrenal glands being out of balance. I've had a lot of heart palpitations over the years. It's definitely something you need to get checked out. Have you started taking magnesium yet? I think we talked about this. Magnesium should help with the heart palpitations, but you may need other supplements. Someone who does muscle testing (applied kinesiology) can determine what kind of supplements you should be on. You may need B vitamins and iron. With as much as you bleed, you are probably anemic, which can cause dizziness and heart palpitations. If you are having heart palpitations, you can not have any kind of stimulants. That includes caffeine and chocolate. I think we talked about this too. Decaf and green tea are also out. They have caffeine too. You also have to find out the source of your abnormal uterine bleeding. This will make you feel crappy too.

Do you have lupus? Well, if you have already tested for it, you probably don't. You are pretty young to have lupus. I think you have other problems which need to be identified first. Once you are getting treated for the leaky gut syndrome and hormonal imbalances, if you are not getting better, then you can start worrying about autoimmune diseases.

I definitely think you have leaky gut syndrome. You should get tested to see what kind of dysbiosis you have, either from Candida or bacteria, or both. You probably already know that the antibiotics can make the bacterial dysbiosis worse. That's probably why you feel so bad after taking the antibiotics. I'm not a big fan of self diagnosis. If you get tested and find out you have bacterial dysbiosis, you can try taking this Chinese herb Huang Lian Su. Just google the name, and you will find it. Or, find a competent Chinese medical doctor to work with. This herbs works well, but you only want to take two twice a day, even though the directions say you can take more. I have had to take it for two months to work. It's a strong antibiotic herb.

The toxins you are absorbing and not excreting from the leaky gut syndrome can also cause heart palpitations. This does not necessarily mean something is wrong with your heart. It could just be a symptom of a bodily imbalance.

I don't know how you are going to pay for the testing, but you can not wait any longer to get treatment. With what you are tell us here, you are seriously sick and you need to get help before you do develop some kind of autoimmune disease. Please, take care of yourself!

Claire

[Rachel--24]

Hi NoGluGirl, I think you should check out some other testing before the Lyme. I think you have bigger fish to fry than Lyme. The fact that you are having hot flashes means that your hormones are seriously out of whack. Someone your age shouldn't be having hot flashes. Hormonal imbalance can screw up everything from your adrenal glands to your thyroid. When your hormones are out of whack, you will feel crappy. I hope you have stopped getting those hormone shots.

Claire,

Treating the hormonal problem is not addressing the underlying issue. I had hot flashes at 31....when these infections started overcoming my immune system. This is when all of my hormones went out of wack. Lyme disease seriously affects the ENDOCRINE system....the ENTIRE endocrine system. A person can get hot flashes at *any* age when there is infection involved.

So yes....if she had Lyme disease she would most definately be experiencing these types of symptoms. If she ignored the disease and focused on correcting the "imbalance"...she would get nowhere. Heart palps and hot flashes are extremely common symptoms of Lyme. I've had these exact symptoms.

In some cases, hot flashes and sweating can be indicative of an infectious disease such as tuberculosis, Lyme disease, or AIDS. If you also feel sick, your doctor should suspect an infection. "When you're having menopausal hot flashes, you may feel tired because you haven't had a good night's sleep, but you shouldn't feel sick,"

I think this is *key*.....when the hot flashes are caused by hormonol issues...the person is NOT sick. I would say that NoGlutenGirl is definately having health issues...and not just hormonol issues.

No...she should not be having "hot flashes" at her age......unless they are caused by infection...in which case age is not a factor.

Regardless of whether or not she has Lyme...she definately has *something* going on or she would not be having candida overgrowth. This is a problem that gets out of hand when the immune system is under a great deal of stress. Candida is also a symptom of a larger problem.

If she focuses on hormones...she would essentially be treating a symptom of a much larger issue. I made the mistake of trying to correct the hormonol imbalance for 2 long years...I wasted time...and I got sicker. Lyme is not the only infection capable of causing disruption of the Endocrine system and hormones.....but it is the most likely given her symptoms.

Saying that she has bigger fish to fry than worrying about Lyme would be like saying to an undiagnosed Celiac " Don't worry about testing for Celiac....you have bigger fish to fry with your gut issues and anemia."

They can try to "heal" their gut all they want and they can take a million supplements to try to "fix" the anemia...it aint gonna happen as long as they are not addressing the cause of those symptoms.

All of the things going on with NoGluGirl are symptoms.....they are symptoms of a larger issue. These types of hormonol problems arent occurring for no good reason. There is a reason behind it and if she ignores that reason....she is opening herself up for more problems.

I respectfully disagree with focusing on correcting the imbalance rather than searching for the cause.

While many people think hormones are only related to sex, what they don

[Rachel--24]

Hi Rachel, All uterine fibroids are in your uterus. Did they say which part of your uterus? Fundus means the top of your uterus. They also describe anterior (front) and posterior (back). Also, there are different areas of your uterus where your fibroid could be:

1) Subserosal: these are on the outside of your uterus, usually just underneath the outer lining.

2) Submucosal: these are in the lining of the inside of your uterus or just under it.

3) Then there are the ones that are in the middle of your uterine wall. I forget the term for those. I think the term is intramural.

4) Penunculated: These hang off a stalk. They can be either on the inside or outside of your uterus.

You can get all this information from your ultrasound analysis. Ask your doctor for a copy.

I get pains in my ovaries when I'm close to ovulation. I can tell which ovary is ovulating based on which side the pain is on. I'm wondering if you are feeling that also?

I dont have any idea as to where the fibroid is located. I was only told that it was very small.

It shows up in BioSET testing only in association with gluten and with candida/mycotoxins. The pain only showed up after I got sick. Its definately related to my diet and not ovulation.

The pain can be gone for months but then return when new foods are added into my diet. This time around there are a few foods to suspect.

Oats, vegetable broth and Soymilk.....I dont think its the soymilk. I've been off of the oats about 5 days....the pain isnt constant...it comes and goes. If it were caused by gluten in the oats....I suppose there could still be some lingering affects. If the pain continues to pop up...I'll have to eliminate the veggie broth and go from there.

[miamia]

OMG....

Miamia...I just came back to post if anyone has seen you or heard from you.....I was worried.

Was gonna put out an APB.

Anyways.....I seee you.

Are you off the antibiotics yet? How are you feeling?

Rachel-

thank you for thinking of me. I have been reading but not posting so much becasue I have not been feeling great. I am still on antibiotics but we switched to a stronger one. I am going to be doing this one for like a month so I am already half done. My doctor was wondering about worms and I just did my 2nd if this 3 day treatment. There as hard or harder than lyme to diagnose and my major complaints are the top symptoms. At this point I really am willing to try anything I just want to get Better.

I went away to Florida last weekend because it is just to cold for me here in Ny it has not even been reaching th 30s and I get much sicker in the cold. I may be going back for another weekend very soon I don't have much money but I really think of it as doing something for my health my body is just really not doing well in this cold weather I feel like it is crippling any efforts I am making to get better. The good thing is my dad went with me and his brother lives down there so we have some where to stay so its just the matter of paying for the flight. (I have to bring all my own food so its not like I spend money going out to eat)- though I kind of wish I had to!!! Thats one of the most annoying things about traveling for me now is packing up all my food because my options are so random and so limited.

How are you doing ? Are you noticing any changes with the ART? I love reading about your appointments so keep posting

Miamia