Omg...i Might Be On To Something

[Rachel--24]

What is myalgic encephalomyelitis (ME),

I dont think I ever heard of it before??

I just started reading Nikki's link.

[dlp252]

Wow. I especially like the part where he says, "but there are also some highly intelligent people who approach the problem thoughtfully and rationally. They cannot be dismissed."

He must have heard about our Lyme Ladies!

No doubt! Our Lyme (and others) ladies are without equal!

[dlp252]

I tested myself a long time ago and I had most of the tender spots.....enough to be diagnosed. I would check and sometimes I'd have nearly all the tender points and other times...barely any. Since I changed my diet I really probably only have 2 tender spots still.

Me too. My old chiropractor also told me I had at least 12 of the spots while she was seeing me...never sought diagnosis though because I have a really good friend who has it and she is just miserable on a daily basis, but she won't change her diet and she won't look for other reasons for it. I also happen to believe, as you do, that there is something that causes it. I don't believe our bodies just go into severe pain mode for no reason. I just want to find out WHY my body is in pain and my muscles are tight beyond belief, lol.

What is myalgic encephalomyelitis (ME),

I dont think I ever heard of it before??

I just started reading Nikki's link.

Hum, I'll have to look at the link...never heard of it either.

[Rachel--24]

Nikki....thanks for the link

The conventional medical approach, inculcated in British medical students since time immemorial, is that “If I cannot demonstrate a disease, then there is no disease; therefore the patient is either a malingerer, or is mad.”

There is a dispute between the ME and Lyme disease sufferers. Some of the ME organisations will not tolerate the suggestion that “their” condition could be caused by Lyme disease.

So they would rather have something that cant be treated??

This sort of stupidity makes Dr Crippen even more cynical about the ME militants. If there is even a faint possibility of an explanation for the underlying illness, why on earth not explore it?

Yeah!! I really like this guy.

Today the laboratory has faxed through a result saying : Lyme disease test

[Rachel--24]

So I asked Anna (my BioSET lady) if its weird that my IgG was totally normal for candida and my IgM was through the roof??

She said its not necessarily "weird"....it could be that the IgG immune response hasnt kicked in yet. She said it could be a good sign....in that the immune system isnt showing signs of long-term infection.

I dont think so....its been 4 years and I think I should have IgG's.

I remembered that Dr. Rick from HN had ordered a test for all sorts of bacteria....lyme was on there too. I didnt test positive for anything. He said that my IgG was too low and that I *could* be positive for something and it wouldnt show up. He said my IgG was lower than the normal range.

I told Anna about that....she said that yeah....that could be another reason my IgG for Candida was normal. She said that that part of my immune function may not be very active. I asked if thats just the way my immune system is or if it has something to do with my being sick??

She said it could be either one of those reasons. She said some people have low secretory IgA...she said shes one of those people and its not easy to correct. She said she catches things easily because of having the low secretory IgA.

When I had my IgG food panel....the big one with over 100 foods...I only tested positive for a few spices...and banana.

OK...we all know this cant be right??

The Dr. who had ordered the test thought they had sent her someone elses results.

She said "How can these be your results??"

So maybe I'm not testing positive for foods and other things because I dont produce enough IgG.

[dlp252]

Well, that's a scarey thought Rachel...how are any of us supposed to know what's what in that case? I don't think I ever had an IgG test, but I know nothing came up on my scratch tests for foods.

[nikki-uk]

What is myalgic encephalomyelitis (ME),

Chronic fatigue syndrome as known in the UK.

[NoGluGirl]

Thanks! I'm going to have to bring a note pad ... good thing Adam's going to be there, too. This brain fog is killing me!

NoGluGirl, did the Flagyl help the Fibro? Wouldn't that indicate the Fibro is a bacterial infection?

Dear CarlaB,

The Flagyl actually intensified the Fibro, I am sorry to say. Fibro is normally yeast related according to research I have done. Yeast can move into the muscles, and make things very painful. Getting rid of the yeast is essential to remove the Fibro. What it does to your stomach is even worse!

Sincerely,

NoGluGirl

[NoGluGirl]

I'm digging more deeper into the possibility of candida being the trigger for Celiac and non-celiac gluten intolerance. Its actually making more sense to me then anything has so far...Even moreso than the possibility of Lyme being the trigger.

I'm now thinking Lyme is not a trigger for Celiac. I think its more likely that people with Lyme...or *any* viral or bacteria infection are susceptible to candida....either due to weakened immune defense or antibiotic treatment for the infection. Most people with Lyme *do* have Candida as well.

Now that I've learned about the candida/gluten connection I'm pretty darned convinced.

I'm gonna post this again...in case anyone didnt see it the first few times...

Interestingly this research is available right here on this site....I wonder why noone has ever brought this up??

https://www.celiac.com/st_prod.html?p_prodid=859

Well....the more and more I think about it...the more its making sense to me.

My Candida book actually tells of studies they've done which show that candida albicans leads to autoantibodies.

Check this out...

It goes on to say...

All of my research keeps coming back to the fact that autoimmune disease is caused by microorganisms....bacteria....yeasts....pathogens.

I think candida albicans would be the most prevelant one....given the overuse of antibiotics accompanied by the diet most are accustomed to here in the US.

It goes on to discuss the results of further studies done on mice. After the studies the researchers concluded that infection by candida albicans induces a nonspecific immunosuppression.

It says yeast is associated with depressed cellular immune system.

So I've got all these possibilities running through my head about this....

I always was curious as to why in some families....all family members have Celiac and in other families only one person may have it. That totally baffles my mind.

So I'm wondering if in these cases it could be yeast?? This could happen in so many ways....here are a few scenarios that come to mind...

1. The mother has candida (or developed it during pregnancy when chances for yeast infection are high). This is passed onto the children....I'm pretty sure it can be passed through breast milk if I'm remembering correctly. The yeast overgrowth (even if short-term) can trigger Celiac.

2. The mother has latent lyme infection and passes latent lyme onto the children. The presence of the bacteria by itself....or with additional yeast overgrowth...triggers the autoimmune response....hence triggering Celiac.

3. The family is affected by something in their environment. Chronic mold exposure, for instance, can suppress the immune system and alter the intestinal flora....leading to a candida overgrowth. Celiac Disease is then triggered...in all who are genetically susceptible. (This seems like a very likely scenario to me)

I was posting on another thread about mold, candida and had "cut and pasted" that research about candida triggering Celiac.

Then someone posted this.....

So that really got me thinking.

Of course genetics is the biggest factor in who gets Celiac.....but are those who are living in environments which suppress the immune system and promote candida overgrowth also the ones who are most likely to have their gene triggered??

We know pregnancy is a huge trigger for Celiac.....pregnant women are also more susceptable to yeast infections.

All triggers for Celiac involve a weakening of the immune system....which would also be the most likely time for an opportunistic yeast like candida albicans to step up.

I dunno...I could be not thinking clearly (I started my Nystatin).....but it does seem to make sense to me in alot of ways.

Also...I'm not one to believe we get autoimmune disease for no good reason. Something had to be behind my Graves Disease. Unless I got exposed to Lyme when I was younger it couldnt be responsible for my Graves because I got "the bite" a few years after my thyroid went hyper.

I always smoked...always had high levels of stress and always ate the most unhealthy diet. My thyroid would only wack out when I was under more stress than normal. I wonder if the stress was supressing my immune sytem enough to let candida overgrow for a period of time....until I calmed down and my immune system got it under control again.

Then maybe since the last time I was under stress and my thyroid wacked out... and I had the dental work done at the same time....maybe the mercury got in the way of allowing my immune system to recover like it had so many times before.....then with all the stuff that heaped on after that....the candida and everything else just exploded??

Another post that got out of hand...

Me and my "theories".

Carla....have a safe trip!!!

I'll be waiting to hear all about it! I hope it goes well.

Dear Rachel--24,

I am so glad you posted that info about Candida and Celiac. That confirms my suspicions and the research I have done as well. I am of Irish descent. My doctor just told me the other day that I could just be one of the few people whose tests came back negative due to not being able to produce antibodies. She says she has had some patients like me who had negative biopsies and serology, yet by their medical histories, were likely celiac. The diet definitely has helped, but there are other issues like Candida that need taken care of. Anyhow, that posting really seems to be quite accurate.

Sincerely,

NoGluGirl

[Rachel--24]

Dear Rachel--24,

I am so glad you posted that info about Candida and Celiac. That confirms my suspicions and the research I have done as well. I am of Irish descent. My doctor just told me the other day that I could just be one of the few people whose tests came back negative due to not being able to produce antibodies. She says she has had some patients like me who had negative biopsies and serology, yet by their medical histories, were likely celiac. The diet definitely has helped, but there are other issues like Candida that need taken care of. Anyhow, that posting really seems to be quite accurate.

Sincerely,

NoGluGirl

NoGluGirl,

Have you been gene tested to see if you're susceptible to Celiac?? It seems likely since you're Irish...but a gene test could answer that question for sure.

[CarlaB]

Hi everyone! I had a great doctor's appt. today! It was SO GOOD seeing a doctor who knew what he was doing and knew I was sick. He said after looking at my Igenex results that if I had any doubt about having Lyme Disease before I went in, that I should have that doubt no longer ... my test results were indisputable. I have it and the results show I've had it for a LONG time.

They did all kinds of tests and gave me several prescriptions for both antibiotics and Nystatin for the yeast that I'll most likely get from the antibiotics. He said it would be at least a year or two of treatment. He said the treatment is to get the bacterial load to a low level, then (and at the same time as treatment) you work on building the immune system to handle the rest of the load.

A VERY interesting note to those HERE, he tests EVERYONE for celiac! Since there is almost a complete overlap of symptoms, it's important to rule it out before diagnosing Lyme. So, even though Lyme and Celiac are probably not related, the symptoms themselves are not enough to tell which one you have. This is why those who think they are gluten intolerant but didn't test positive for celiac should be open to other options if they don't get better on the gluten-free diet.

I'll send out an email with more detail to those who sent me their address later (I may compose it on the plane tomorrow). My prescriptions are at the pharmacy, so I can't write it now because I can't remember what they are.

This doc is a holistic doctor and 90% of his patients are Lyme Disease patients. He treats over 5000 patients a year with Lyme and they come from as far away as the UK. He is also very well educated in supplements and natural medicine, but thinks Lyme when it's as bad as I have it needs to be treated with antibiotics to get it down to a manageable level.

I'm off to pick up my meds, then we're watching a movie on my computer, so I won't be online. Have a great evening.

[Rachel--24]

Dear CarlaB,

The Flagyl actually intensified the Fibro, I am sorry to say. Fibro is normally yeast related according to research I have done. Yeast can move into the muscles, and make things very painful. Getting rid of the yeast is essential to remove the Fibro. What it does to your stomach is even worse!

Sincerely,

NoGluGirl

If the Flagyl intensified your pain I would bet money you were having a Herx reaction.

I dont necessarily think its the yeast moving into the muscles that is causing the pain in Fibro. Remember, if there is a yeast overgrowth there is an underlying cause. A healthy immune system would not allow yeast to get out of hand.

To get rid of yeast its essential to find out why the yeast became a problem to begin with.

The results of some studies have shown that most cases of Fibro are related to Lyme Disease....yeast happens to be a side effect of Lyme disease.

Even though candida can wreak havoc and cause some nasty symptoms...its also a symptom in itself. It overgrows when the immune system is suppressed...alot of factors can lead to this...but if you had a worsening of symptoms on Flagyl....there is a strong liklihood that the Flagyl was working on an infection in your body.

Its something to look into. Yeast will always be an issue until you find out why.

I'm assuming you were already having Fibro symptoms before you took Flagyl....you said your symptoms got worse while on it ...and you've been worse since?? Sounds like you might have already had an infection of some kind and since your immune system was already weak...when you took the Flagyl and killed off more good bacteria it gave the yeast even more of a foothold.

When you take Flagyl and feel worse....its actually a sign that the antibiotic is working. When you kill off bacteria you get a worsening of symptoms due to the release of toxins from dying bacteria. Its no different from die-off while taking antifungals for yeast.

You may have continued to feel bad after the antibiotics because either you worsened the problems with yeast while on Flagyl or because you started treating something with the Flagyl and then stopped without getting the job done. If you do have an infection its likely that both of these issues could be contibuting to your worsening of symptoms.

[Rachel--24]

A VERY interesting note to those HERE, he tests EVERYONE for celiac! Since there is almost a complete overlap of symptoms, it's important to rule it out before diagnosing Lyme. So, even though Lyme and Celiac are probably not related, the symptoms themselves are not enough to tell which one you have. This is why those who think they are gluten intolerant but didn't test positive for celiac should be open to other options if they don't get better on the gluten-free diet.

Great news Carla!! I cant wait to get more details.

Awesome that the Dr. realizes how Celiac symptoms overlap with Lyme. Probably about half of this board is negative for celiac and still having symtpoms after going gluten-free.

It goes back to this quote from a previous post.

If there is even a faint possibility of an explanation for the underlying illness, why on earth not explore it?

I think *most* people would want to have this information....unfortunately they may not ever get it....especially on this board.

I dunno....maybe Lyme is just too scary a possibilty for some people?? For me its a much more scary thought to think I'd have to live with Fibro pain and take meds for the rest of my life....but thats just me. I have no use for pain in my life....and certainly no use for drugs.

I'm looking forward to your report...enjoy your movie.

[CarlaB]

I think *most* people would want to have this information....unfortunately they may not ever get it....especially on this board.

Yes, I just PM'd the admin regarding my doctor's opinion that the two diseases had a complete overlap. This is the reason I haven't been posting on other threads ... if I can't tell someone who's not celiac and not getting better on a gluten-free diet that there may be another problem, that for me it was Lyme, then I don't feel right telling them anything at all. People are certainly here to research celiac, but I'm sure they'd want to be told, "No, I actually don't think you have it" if someone actually thought that.

But I feel safe on this thread. Thank goodness for it, too, or I never would have gotten a diagnosis myself.

[Rachel--24]

Yes, I just PM'd the admin regarding my doctor's opinion that the two diseases had a complete overlap.

Carla...good luck with that!

People are certainly here to research celiac, but I'm sure they'd want to be told, "No, I actually don't think you have it" if someone actually thought that.

Exactly!! I sent admin a very long pm....stating all of my feelings about this. (you think some of my posts are long! )

The fact is that *most* of the people coming to this board are in search of answers and DO NOT have a diagnosis of Celiac or anything else. Not everyone posting here actually has Celiac....in fact its probably a small percentage who actually end up positive for Celiac. Most are in search of answers....just as we were. Gluten free can only take you so far if there is an underlying issue.

Why should people who are still sick (and many times undiagnosed) constantly be told to check and re-check their wooden spoons or cosmetics?? I would think that once people have eliminated sources of cc....they should not be experiencing debilitating symptoms that totally ruin their quality of life.

Sooo....I do not read these types of threads anymore either because it too hard to see people suffer and not be able to offer some info. that may be helpful to them.

Most people are asking "Can my symptoms be from Celiac??" The answer would be YES...in most of these posts....however this does not mean that they HAVE Celiac. Just that Celiac is one of MANY possibilities.

I feel like if sharing our experience may make a huge impact on someones health.....why would *anyone* be against this.

Thats what its all about....HELPING each other get well.

I helped alot of people on various candida boards by obssessively posting about Celiac and gluten intolerance. I'm sure I annoyed some people but so what?? I really didnt care much if a few people were annoyed when alot of OTHER people were benefiting from the info. Thats whats important....giving people the opportunity to learn about something they may have never heard of otherwise.

Same with the Lyme board.....lots of posts about Celiac over there. Lots of people trying to help each other get well by tossing out other possibilities.

But I feel safe on this thread. Thank goodness for it, too, or I never would have gotten a diagnosis myself.

I mentioned this in my pm as well. Yes, there are Lyme boards out there for us....but why the heck would someone go to a Lyme board if they have no clue they could even possibly have the disease??

I used you as my example. You may have learned about Lyme on a "Celiac" board...but who cares *where* the info came from....the point is that you now have a diagnosis and can get well. Isnt that why we're all here to begin with....to learn from others and to improve our health status??

Oh well...we are safe in the OMG thread.

[CarlaB]

Rachel, I agree entirely. I do check the Lyme boards, but I also have gluten intolerance, so belong here, too. And, you're right, on the Lyme boards, gluten-free is talked about freely. I can understand not wanting it to turn into a Lyme board, but telling someone to keep looking, it doesn't look like gluten is a problem for them, is not exactly the same as turning it into a Lyme board. When there is a symptom overlap, you will tend to hear about the "other" diseases as well as the one the board is set up for.

I picked up my prescriptions. Only had insurance trouble with one ... could only get three days' worth till Monday. They didn't give me one of those measuring spoons, so Adam had to go back for one.

[Rachel--24]

When there is a symptom overlap, you will tend to hear about the "other" diseases as well as the one the board is set up for.

Definately....its a common occurrance on all health boards. Thyroid disscussions are very common on this board as well as every other board I've been on. Candida is discussed on this board quite frequently as well as every other board I've been on.

I think that Lyme is not acceptable here because there is no study *proving* a link to Celiac. Heck....the medical community doesnt even put any research into lyme period.....let alone research showing a link to Celiac.

I dont think there is a "link" that can be determined....the point is that ALOT of people with Lyme have digestive symptoms and are gluten intolerant...or Celiac. There is plenty of research to show that Celiac is triggered by stress on the immune system....from infection or anything else. So ummmmm...Celiac can be triggered by only *certain* infections (like mono)??

Yeah....I dont think Lyme would put enough stress on the immune system to possibly cause Celiac.

There is also all this research suggesting that bacteria or other pathogens may be the cause of autoimmune disease. With Celiac being an autoimmune disease....its not really surprising to me that many people dont get better just from eliminating gluten. With the cause of autoimmune disease still being "unknown"......its not really far-fetched to think that alot of people who dont get better might have an infection which is continuing to suppress their immune system....the same way it did when it "triggered" Celiac to begin with.

I picked up my prescriptions. Only had insurance trouble with one ... could only get three days' worth till Monday. They didn't give me one of those measuring spoons, so Adam had to go back for one.

When are you gonna start on the meds???

[AndreaB]

A VERY interesting note to those HERE, he tests EVERYONE for celiac! Since there is almost a complete overlap of symptoms, it's important to rule it out before diagnosing Lyme. So, even though Lyme and Celiac are probably not related, the symptoms themselves are not enough to tell which one you have. This is why those who think they are gluten intolerant but didn't test positive for celiac should be open to other options if they don't get better on the gluten-free diet.

Very interesting. Can't wait for your update.

But I feel safe on this thread. Thank goodness for it, too, or I never would have gotten a diagnosis myself.

Yep, this is a safe thread. I'm primarily here as I've cut my time drastically on this board. Working on spending time with my family etc.

I always read everything even if I don't post.

The fact is that *most* of the people coming to this board are in search of answers and DO NOT have a diagnosis of Celiac or anything else. Not everyone posting here actually has Celiac....in fact its probably a small percentage who actually end up positive for Celiac. Most are in search of answers....just as we were. Gluten free can only take you so far if there is an underlying issue.

I think it would be good for people to be made aware of possibilities.

I'd just keep referring people over here. If they are open to finding answers they'll come over and post, like others have done in the last few months.

[dlp252]

Oh Carla, I'm so happy the appointment went well!!! Can't wait to hear the details! What meds did he give you?

Why is Lyme such a bad word here, lol. But, it's the same on the fitness board I belong to...there you can't talk about diet or supplements...those two things are really important to fitness but you can't discuss them there. I suppose diets and supplements can get really heated in discussions, but it would be nice to say "yah, I'm taking extra Vitamin C for my sore throat" Can't do that there. This thread is a very safe haven for me!

So I have a question that I think I'll ask the BioSET lady tomorrow (if I get Anna that is...don't think it would do any good to ask the others)... Is it possible that the antibiotics I was on skewed the testing results on my initial visit...I was off of them for 2 days already by that time. I mentioned the antibiotics but she didn't say anything. I'm wondering that if antibiotics can alter the lyme tests for a period, would they also affect things like BioSET? I wish I understood more about how BioSET really works.

[CarlaB]

I think that Lyme is not acceptable here because there is no study *proving* a link to Celiac. Heck....the medical community doesnt even put any research into lyme period.....let alone research showing a link to Celiac.

When are you gonna start on the meds???

I think a link is irrelevant ... the fact that the symtoms are the same and people come here looking for a diagnosis is enough of a reason to discuss it. If someone doesn't seem to be getting better on the gluten-free diet, I don't see why you can't say, "Lyme has similar symptoms, you aren't getting better gluten-free, keep looking for what's wrong, Lyme might be something you should look at." Then they can move on ... this doesn't need to be a post diagnosis board for Lyme, but mentioning it and telling them what to look at is helpful and relevant.

I started the meds tonight. Donna, I'll send out an email with details tomorrow. I don't want to post the details here. Lyme is so controversial in the medical field, I just don't want to post details about all that I'm taking for public view.

Little things stress me out right now ... I bought several supplemements from the doc, and the lady didn't put two of them that I paid for in the bag ... also, the doc has to call my insurance company because one of the meds was only covered for three days -- he needs to tell them why he prescribed it for 30 (and it will likely be renewed for a while). I'll have to take care of both things on Monday.

[Judyin Philly]

hI ALL

Carla, so happy the apt went well for you..You've struggled for so long.

I'll pm my email if you would be kind enough to add my name to your list so I can get the info your sending

thanks in advance.

judy

[CarlaB]

Hi everyone! I just sent out the email.

[NoGluGirl]

If the Flagyl intensified your pain I would bet money you were having a Herx reaction.

I dont necessarily think its the yeast moving into the muscles that is causing the pain in Fibro. Remember, if there is a yeast overgrowth there is an underlying cause. A healthy immune system would not allow yeast to get out of hand.

To get rid of yeast its essential to find out why the yeast became a problem to begin with.

The results of some studies have shown that most cases of Fibro are related to Lyme Disease....yeast happens to be a side effect of Lyme disease.

Even though candida can wreak havoc and cause some nasty symptoms...its also a symptom in itself. It overgrows when the immune system is suppressed...alot of factors can lead to this...but if you had a worsening of symptoms on Flagyl....there is a strong liklihood that the Flagyl was working on an infection in your body.

Its something to look into. Yeast will always be an issue until you find out why.

I'm assuming you were already having Fibro symptoms before you took Flagyl....you said your symptoms got worse while on it ...and you've been worse since?? Sounds like you might have already had an infection of some kind and since your immune system was already weak...when you took the Flagyl and killed off more good bacteria it gave the yeast even more of a foothold.

When you take Flagyl and feel worse....its actually a sign that the antibiotic is working. When you kill off bacteria you get a worsening of symptoms due to the release of toxins from dying bacteria. Its no different from die-off while taking antifungals for yeast.

You may have continued to feel bad after the antibiotics because either you worsened the problems with yeast while on Flagyl or because you started treating something with the Flagyl and then stopped without getting the job done. If you do have an infection its likely that both of these issues could be contibuting to your worsening of symptoms.

Dear Rachel--24,

I have not been genetically tested for Celiac at this time. I do not have insurance, so I cannot afford to. My symptoms have been so bad (mostly the digestive symptoms - especially the nausea) that working a regular job seems impossible. Even so, I have applied to various places, but have yet to hear anything. I have my own business I have been trying to start for a long time, but nothing has happened with that. If you want to check out my business, go to kimskraftsgiftsandmore.com. As far as Celiac goes, the reason I feel it is likely Celiac and not just gluten intolerance is due to the fact I had tried digestive enzymes that did not do anything. If it was just an intolerance, shouldn't that have done something?

What you said about the Flagyl is what I have been thinking lately. I have wondered about Lyme. The reason is even though I do not think I was ever bitten by a tick, the symptoms would make sense. Candida is more likely, but I am not totally ruling Lyme out along with it. I was on steroids for asthma as a teenager, I have never been healthy. I had broncchitis every year (sometimes twice a year) since I was an infant up until I was 17. That does not include all of the antibiotics I was on for other things, like ear infections and sinus infections. Then there is the birth control I have had to take for the ovarian cysts. (I had five in less than ten months when I was 17). I used to be anemic because my periods were so heavy.

I have just been feeling weird all over. How do you describe that? I know Candida can cause that. Lyme is not a total impossibility though. It is rare in my area of the country though, from what I understand. I live in Evansville, Indiana. We are almost on the tip of the state near Kentucky in Southwestern Indiana. I am tired and hardly can think at times. My attention span is very short a lot. I have always been somewhat hyper anyway. The Fibro sure does not help. Also, I always had healthy teeth up until a few years ago. All of the sudden, I started getting cavities. I appreciate your input.

Sincerely,

NoGluGirl

[Rachel--24]

I'm wondering that if antibiotics can alter the lyme tests for a period, would they also affect things like BioSET? I wish I understood more about how BioSET really works.

Donna....its a good question...I dont really know but my *guess* is that it would still show up in BioSET. When I was worried about getting a "false" negative from BioSET (since he was wanting this test for confirmation after Igenix) he told me that BioSET is overly sensitive. It will pick up everything that is there but it will also pick up stuff thats not really problematic.

I'm guessing it would pick up candida in *everyone* since everyone has it. .but it doesnt mean its a problem. But if you show problems with everything *related* to candida like molds, mycotoxins, certain foods...it pretty much paints a clear picture. Then when they actually do the treatment for those things....it can become even more clear.

Thats how it worked for me....at the initial appt. she said I had a big candida problem....but I had alot of problems so it wasnt like Candida was the *main* thing. It didnt come up again until we started the yeast/mold treatments and saw how strongly my body was reacting to these things...thats why she ordered the blood test.

On my BioSET results...as far as "bad guys"....I had 9 bacteria show up.

As for Lyme and co-infectants...I had more than 25 show up.

Parasites...NO POSITIVES

Virus.....NO POSITIVES

Candida/Mold/Yeast....A whole bunch

As for all the bloodwork, stool tests and everything else I've had....they've never been able to find a parasite.

Every virus test has also been negative.

Candida has shown up in a stool test and now in the bloodwork.

The bloodwork also had elevated antibodies for intestinal bacteria

The Igenix test that is 82% specific for Lyme was highly positive.

The Western Blots showed evidence of Lyme.

So this actually corresponds with the BioSET results....in every category.

Both the Dr. and Anna agree that I have definately been exposed to Lyme...its only a question as to how much its contributing to my illness/symptoms.

Looking at the pattern between the blood/stool tests and the BioSet test....I probably really shouldnt be questioning the Lyme.

Its probably the thing thats weakened my immune system enough to cause this major candida problem. But the symptoms from leaky gut and candida are more debilitating for me at this point.

When you tested for Lyme did you go through that whole panel?? When she tested me there was 2 or 3 trays...alot of vials. If you went through all of these and had absolutely nothing show up....I'm pretty sure you dont need to worry. On your report does it say "No Positives" for Lyme and co-infectants??

I think you should still ask Anna....even if you dont get her....if shes not busy with someone else the other girl can probably get her and ask her. She's come over and talked to me or answered some questions even when she wasnt doing my treatment.

The girl (Susan) always comments on my readings during the treatments....on how severly stuff is bringing me down or how much stuff I end up needing cleared. I always feel like I'm really bad off....well...I guess I kind of am....but still.

I dont know if this is just how she is in general or if I'm just a big mess.

I'm curious if she acts this way with you too.

Yesterday I ended up asking her if I was the worst one shes seen or something?? She said that I'm not the worst but I'm just more complictated because nobody can start me on any kind of treatment because of how reactive I am.

I hope you get Anna tomorrow.....I'm curious to know what she'll say about the antibiotics...if they could have any affect on the results.

I'm looking at my report right now....yeah my toxicity was 11 out of 15.

This is what it says...

Rachel's overall toxicity score was 11/15, extremely high. Her drainage score was 11/15, also extremely high. Due to the severity of her symptoms, this is no surprise. Her cellular transport score was 9/15 indicating significant impairment in nutrient absorption.

I just realized that you might not have a detailed summary of your results. I only have this because she had to write up a report for my Dr. Its more detailed than what she gave me after my initial testing.

Everything that shows up in BioSET seems to correspond perfectly with what is going on with me. I dont think the treatments themselves are working for me. She said stuff can get re-sensitized if toxicity level goes up....but mine is still way up there....I think its too high to stay de-sensitized for even 5 minutes.

Toxicity is the reason I got all of these sensitivities in the first place and I know nothing has changed with me having all this candida and eating all this ice cream everyday.

I remember reading from another girl with Lyme who had as severe intolerances like I do. When she went through BioSET it worked for her and she no longer reacted to food and environmental things. I think she had her Lyme under control though because she wrote that whenever she came under stress her Lyme would flare up....she'd re-sensitize to things and have to go back in and get re-treated...and then she'd be ok again.

This sounds alot like me....whatever I've got going on was definately triggered by stress. For about 5 years I was getting physical symptoms when under alot of stress or when I pushed myself too hard at work. This was when my thyroid would start wacking out and go hyper.....so I just thought my symtpoms were only related to that.

Maybe the Lyme was trying to overcome my immune system while I was under stress and this is why I was getting autoimmune stuff with my thyroid.

My treatment last night was for imflammation. Anyone wanna guess how I did??

Imflammation is my main complaint.....I can feel it all over my body. Its like everything I react to causes more and more imflammation. In 4 years I havent been free of imflammation and if I dont stop reacting to everything....how will it ever end??

So yeah....I reacted to maybe 95% of the vials.

I was "calling" stuff before I touched them....saying "I predict this one." I was right whenever I did this....well...I guess the chances of being wrong are pretty slim when your reacting to entire panels.

There was stuff like histamine, mast cells, enzymes....stuff like that.

When she tested those things to see where it was affecting me most...as far as organs and body systems....it was affecting me everywhere. It seemed like almost all of my organs and everything else in my body was affected by imflammation....even more than in any previous panels.

Well yeah....it makes sense to me...I'm pretty much a walking mass of imflammation. I cant escape it...it goes everywhere with me. I eat something...I get imflammation. I breathe...I get imflammation. I *look* at something....I get imflammation.

Stupid imflammation.

I'm always checking to see if small intestine ever shows up in any tests....it never does. I always see stomach and large intestine showing up. The large intestine (colon) is where candida lives....also some bad bacteria like C.Diff.

This time my small intestine showed up....my small intestine has imflammation. Isnt this where the food gets absorbed?? So yeah...I must have leaky gut and poor nutrient absorption.

I think I'm caught up on all my Bioset posts now.

Until next Tuesday.....

[Rachel--24]

As far as Celiac goes, the reason I feel it is likely Celiac and not just gluten intolerance is due to the fact I had tried digestive enzymes that did not do anything. If it was just an intolerance, shouldn't that have done something?

No....enzymes arent going to stop an immune reaction to gluten. If you have leaky gut (do you have problems with lots of food?) and gluten is leaking into your bloodstream causing your immune system to attack...an enzymes is not going to solve the problem.

You can still get the same symptoms from gluten intolerance...even if its not Celiac. Half of the people on this site do not have Celiac but still have an immune response to gluten that is no less harmful than having Celiac. You can still get an autoimmune response to gluten that does not specifically damage the intestinal villi. It would not be Celiac though.

If it were as simple as taking a digestive enzyme....half of the people on this site would be perfectly fine and out drinking beer and having pizza...but unfortunately it doesnt work that way.

It sounds good though!

Enzymes can help with digestion and relieve symptoms that can result from improper digestion....they can sometimes help reduce allergic-type reactions by helping to break down the food. It wont help much in a situation where gluten is triggering an immune response....whether its autoimmune or not....its going to continue to cause imflammation to your intestinal lining and cause all sorts of other problems and symptoms.

People with candida issues especially should not eat gluten grains.

Its possible you have Celiac but hard to know without any testing. Either way you should stay away from gluten.....its only going to worsen whatever else might be going on.

I have just been feeling weird all over. How do you describe that? I know Candida can cause that. Lyme is not a total impossibility though. It is rare in my area of the country though, from what I understand. I live in Evansville, Indiana. We are almost on the tip of the state near Kentucky in Southwestern Indiana. I am tired and hardly can think at times. My attention span is very short a lot. I have always been somewhat hyper anyway. The Fibro sure does not help. Also, I always had healthy teeth up until a few years ago. All of the sudden, I started getting cavities. I appreciate your input.

Yeah...I'm very familiar with feeling weird all over.

Its difficult to explain to anyone who cant relate....it seems kind of crazy sometimes. Almost like it cant possibly be real...how does a healthy body get so broken??

I know all of the feelings you're describing all too well. I'm actually much much better now than I used to be. For a couple of years I couldnt get out of bed much, couldnt think clearly at all, couldnt remember anything, couldnt drive, slept more than 15 hrs a day, had pain from head to toe and really bad depression. Alot of weird things like numbness and tingling...random shooting pains....stuff like that.

Lyme is everywhere.....its all over the US...its not "rare" at all. Here is the risk map for Indiana....

Open Original Shared Link

Its actually pretty prevelant in Indiana.

Heres a risk map for the whole US.

Open Original Shared Link

Also ticks dont care about borders....they dont just stay in one area....thats why the disease has spread to all states and here in California its been found in nearly every county.

Its definately something to look into....see if it might fit. Unfortunately if you did have lyme its not something that you can treat w/out the help of a knowledgable doctor.

It is true that Lyme causes the pain associated with Fibromyalgia. There is lots of info out there about this.

How long have you been off gluten?? If you're really careful about the diet and still having these types of symptoms you should defiantely try looking into other possibilties. Keeping Candida under control, eating a clean diet and staying away from processed foods can go a long way as far as improving your symptoms.

Garlic is a good natural antifungal if you can tolerate it. Last time I did the candida diet/treatment I ate raw garlic everyday. I think it really helped me.

I started on Nystatin ealier this week...I got some die-off the first couple times I took it but nothing dramatic. I started on raw garlic again....its the first time I've had it in about a year and a half. I got ALOT of die-off from the garlic. WOAH.

I had more tonight with the same results. The way you can differenciate between an allergic reaction and die-off is that after the die-off you will feel better than you felt before...that doesnt happen with allergic reactions. Right now I'm having pain all over...which I havent had in quite awhile. Its taking me forever to write my posts because I've got some brain-fog.

Raw garlic is a really powerful antifungal....they say its actually stronger and more effective than Nystatin. Its proven to be effective on every candida strain except for two. Its also way cheaper than Nystatin or any other antifungal.

The bad thing is that you end up reeking like garlic.

That reminds me.....when I was doing my Candida treatment a long time ago I used to also go to the sauna daily...to sweat out the toxins. I was so self conscious of my "garlic" odor that I assumed everyone could smell it. One time this guy walked into the sauna and he made a face and commented on it smelling kind of funky.

I got embarrassed (there were other people in the sauna as well) and I told him it was me....that I was reeking up the sauna because I eat tons of garlic.

Everyone looked at me kind of crazy like this and the guy said "No...its not garlic...its sweat....they need to hose the sauna down or it starts smelling bad."

Nobody could really smell the garlic but I totally thought I had made the sauna stink with my toxic garlic sweat.

I'm sorry you're having all of these symptoms...Celiac can be part of it so definately stay away from gluten. You probably posted this before but how long have you been gluten-free??