The Lyme Disease Thread

[Rachel--24]

and what's the way to find out if you definately have celiac perminately by genetics or whatever? i'd be shocked if i did since i had no issues before, i had some blood test and it just came up slightly abnormal...everything bothers me which would make sense with what my immunes gone through

It depends which bloodtest was slightly abnormal. If it was one which is very specific for Celiac..then it would be permanant. If it was just the IgG...then its not specific to Celiac....it could be elevated for other reasons....but it can also be elevated due to Celiac.

Having your genes tested will definately give you a better idea. Even if you had no problems with food prior to getting sick...you could still have developed Celiac if you are genetcially susceptible.

Celiac is triggered by stressors...one common tigger is infection. Since you have Lyme and most likely additional infections it would not be unreasonable to think that Celiac may have been triggered as a result...if you carry one or both of the genes.

A large part of the population carries these genes and most do not ever develop the disease...but someone who has a gene and has symptoms while consuming gluten should probably avoid it until it can be determined whether or not Celiac is an issue.

I agree that many people here have not had a diagnosis of Celiac and are reacting to gluten (and other foods) because of problems which are caused by underying issues. However, I also believe that there are many people here who DO have Celiac (and many have had positive test results) and yet there are still other factors which are contributing to their unwellness...and preventing recovery from the gluten-free diet alone.

I think for some people the "trigger" which set off their autoimmune reaction is a short-lived infection or other "event"...a stress or burden on the body that was resolved with treatment or on its own.

For others the "trigger" remains hidden...this would be more of a chronic situation...something like Lyme which can be present in the body long before a pesron experiences symptoms. As we know Lyme can stess the immune system...leaving us more vulnerable to all sorts of insults on the body.

Any one of those insults could be responsible for triggering Celiac in someone whos genetically susceptible. If you then are noticeably reacting to gluten it could in fact be Celiac Disease. However, in this type of scenario recovery would not be possible in treating the Celiac and nothing else....obviously the underlying issues would have to be dealt with in order to recover from all symptoms.

I think thats where alot of people get stuck...because they DO have a Celiac diagnosis...or they HAVE had a positive response to the gluten-free diet. In my opinion as long as there are chronic symptoms which persist long after implementing the diet and as long as the list of additional food intolerances continues to grow...other possibilities should be investigated.

I think with proper testing you can determine whether or not you have Celiac Disease but right now it would only help you to stay on the diet until your health has improved to the point that you can really investigate this furthur. I dont think it would be wise to attempt gluten challenges or anything like that this early in the game.

I do not carry Celiac genes but I've been on the diet almost 3 years now. I've only just started eating gluten again since this past Xmas.

[Rpm999]

ah thank you that helps a lot...i was going to send you a message last night but it says your inbox is full, so i'll send it when there's a little room ....but is there a specific blood test/panel i need to ask for to have the genes tested? i want so be sure with that, i know there's enterolab but when i go back to this doctor i'll just have him do any celiac testing because my other doctor won't release it cause she's....yeah, bad lol so i want to know exactly what i should ask for, incase this doctor isn't quite sure...i assume it's elevated since it came up abnormal, but i'm very curious about the genes

[Rachel--24]

You can order the gene test through Enterolab (which is what I did) or your Dr. can order it...and that would most likely be sent to Prometheus lab. My GI doctor wanted to have my genes tested. He gave me the labslip for Prometheus...I'm pretty sure it required a blooddraw. I never had that test done because I'd already been tested through Enterolab (cheek swab). It may not have been good enough for the GI....but it was good enough for me...I dont carry Celiac genes.

If you plan on going back to the Dr. for Celiac testing you would have to be back on the diet for a good amount of time for accuracy in testing. Not consuming enough gluten can give you a false negative.

If you're going to do that I wouldnt just have them do "any" Celiac testing...you should get the full panel which consists of these tests.

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Total Serum IgA

It would be helpful to know which one of these was abnormal the first time you were tested. You are entitled to copies of all test results.

Now that you'll be starting the process of treating Lyme....there will be lots of tests run and you'll want copies of everything. It would be good for you to obtain these and to understand what they mean. That way you can provide any new Dr.'s with alot of info. that will help them understand more about your health.

[Rpm999]

thank you so much, sounds perfect to me...hey, i want to send you a message cause i had a few little things i wanted to ask about something but your box is full...i just don't want to plague this thread with all my little things when there's other people needing to ask crucial things too

[Rachel--24]

thank you so much, sounds perfect to me...hey, i want to send you a message cause i had a few little things i wanted to ask about something but your box is full...i just don't want to plague this thread with all my little things when there's other people needing to ask crucial things too

Sorry about that...I have room in my box now.

[Rpm999]

wow i'm pissed off beyond belief, the place calls me and first says it isn't positive, then say they never tested western blot when they said they did, THEN says it isn't positive or negative...what a joke they didn't even freaking take me weight or do a physical exam, i knew it wasn't work it when i saw it was a walk-in....they say they put you on 3 years of just anti-biotics and i saw people in there that looked even more like a zombie from giving no name medicines like they do...it's all a big joke/scam...so i need to know...what the hell can i go to? because there really isn't an LLMD, i can't go out of state because i'm strapped for money and my mom's extremely ill...this is all just like a nightmare, i need somebody to test for things like metals and parasites and understand it all from a picture view...at this rate, my immune is going to be destroyed if i keep going in circles like this...who's the best person i could see that could be a big health? i just hate medicines too and don't feel like being drugged up...are naturopaths smart? like, do they know/test for complicated issues like these? im just lost here

[CarlaB]

Well, I don't know that I'd waste my money on someone who doesn't know how to treat Lyme. In the long run, that will end up costing you more than going out of state to see an LLMD.

If seeing an LLMD is totally out of the question, I'd go on full Cowden. It's not cheap, but it's cheaper than traveling for an LLMD. It addresses detox and metals, along with Lyme. It does not address coinfections. It might at least get you moving in the right direction until you can see an LLMD.

[aprilh]

Wow - that is frustrating!

Some ND's are trained in lyme, you would need to call around and find out.

Have you gone on LN to get a referral there?

[Rpm999]

i just asked on lymenet but doubt there's anything...ugh this is horrible, i have the worst luck and literally have no way out with this now, im screwed...i'm wondering if i should somehow try and get that ART muscle testing, i've heard it's amazing for seeing what's going on and how much of an impact it's having

[AndreaB]

Rpm,

ART would be very good if you can swing the cost. It will tell you what is most stressing to your body and also tell you what herbal protocol will work for you as well as the dosage that would be best to work up to.

[dlp252]

i just asked on lymenet but doubt there's anything...ugh this is horrible, i have the worst luck and literally have no way out with this now, im screwed...i'm wondering if i should somehow try and get that ART muscle testing, i've heard it's amazing for seeing what's going on and how much of an impact it's having

Well, I know that ART was the single most helpful thing in pinning down what was most stressful to my body. That was the first "testing" to find lyme for me. I was later able to back that up with actual lab testing, but wouldn't have even thought of testing for lyme had ART not found it. Hopefully you will be able to find someone who will be reasonable.

[Rpm999]

ah sounds great, hopefully i get lucky and it's an option...question though, will this diagnose all the ongoing issues in your body? like, how's it done? i hear it can find issues like metals, parasites, infections and say how much it's bothering you and everything, is this true? if so, sounds amazing for people with a lot going on/bad immune issues

[dlp252]

ah sounds great, hopefully i get lucky and it's an option...question though, will this diagnose all the ongoing issues in your body? like, how's it done? i hear it can find issues like metals, parasites, infections and say how much it's bothering you and everything, is this true? if so, sounds amazing for people with a lot going on/bad immune issues

Not so much of a diagnosis as a window into what is happening in your body. I'd also advise anyone to seek the help of a medical professional to help with whatever is found. Sometimes self treating can be detrimental unfortunately.

I've had two ART sessions and on the first session Lyme, Metals, and bacterial and viral issues were stressing my body most, and the organ most affected by the lyme was my thyroid, which TOTALLY fits with all my symptoms. I can't tell you how many times I've had my thyroid tested, only to have it come out normal.

On the second session, the bacterial load was only slight but the viral issues were gone. It finds what is most stressing your body at the time of testing.

It was very helpful for me because I felt like I was running around in circles trying to figure out everything...I needed something to focus on which thing I needed to work on first. Thankfully, this session lead me to get tested for lyme...basically just so I could prove the ART testing was hooey, lol. To my surprise my visit with the lyme doctor was the most thorough visit I've ever had with a doctor. He tested for TONS of things, not just lyme, to rule in or out other issues. To my surprise the lab testing found exactly what the ART session had.

[Rachel--24]

wow i'm pissed off beyond belief, the place calls me and first says it isn't positive, then say they never tested western blot when they said they did, THEN says it isn't positive or negative...

Get copies of all the tests they ordered. Obviously they dont know how to interpret them.

[Rpm999]

yeah, going to get it faxed to me...i called and they said it was something meaning in the middle, forgot the term, but a very weak positive so they want to retest and see what it is again...does that mean it could be lyme, but weak and one of the things that isn't overpowering my body (like in your case)? if it came up in between, it has to be something i assume

[Guest tomakin]

Anyway guys, there are tips how to fight against Lyme more effective, and how generally increase our defence system - i do NOT sell anything, its just list of natural products like vitamin C.

Open Original Shared Link

Hope it helps.

[CarlaB]

Anyway guys, there are tips how to fight against Lyme more effective, and how generally increase our defence system - i do NOT sell anything, its just list of natural products like vitamin C.

Open Original Shared Link

Hope it helps.

It looks like a good site for those who don't have Lyme ... at least that's what the site says itself, that it's for those who are misdiagnosed.

[Rachel--24]

yeah, going to get it faxed to me...i called and they said it was something meaning in the middle, forgot the term, but a very weak positive so they want to retest and see what it is again...does that mean it could be lyme, but weak and one of the things that isn't overpowering my body (like in your case)? if it came up in between, it has to be something i assume

They probably said your results were equivocal...not clearly positive but there is some evidence that you could have Lyme.

No...this does not mean that if you have Lyme its weak...or that its not overpowering your body. Some of the sickest Lyme patients have negative tests because their immune system is not producing antibodies. It could be that the immune system is too weak but there are also several other reasons why a person with Lyme might not have positive tests.

Its all about the antibodies that the immune system produces against the bacteria...if the immune system isnt putting up a good fight you can be very ill..yet you may still get a negative test.

The results of my Western Blots did not determine how active my infection was...or how much of a role it played as far as symptoms went. Since I have other issues going on there was additional testing I had done....to try to figure out if Lyme was a major player...or if it was just kind of "hanging out".

Alternative methods of testing plus the results of my CD57 gave us a better idea about how active the infection was.

An equivocal on the Western Blots does not mean that your infection (if you have one) is weak....it could mean anything....it could mean that you're immune system is too burdened to produce enough antibodies.

Nine Reasons for False Negative Lyme Disease Blood Test Results

From the Lyme Disease Foundation brochure, Frequently Asked Questions About Lyme Disease

1. Antibodies against Borrelia burgdorferi (Bb) are present, but the laboratory is unable to detect them.

2. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on, or has recently taken, antibiotics. The antibacterial effect of antibiotics can reduce the body's production of antibodies.

3. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is currently on or has previously taken anti-inflammatory steroidal drugs These can suppress a person's immune system, thus reducing or preventing an antibody response.

4. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's antibodies may be bound with the bacteria with not enough free antibodies available for testing.

For this reason, some of the worst cases of Lyme disease test negative -- too much bacteria for the immune system to handle.

5. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient could be immunosuppressed for a number of other reasons, and the immune system is not reacting to the bacteria.

6. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the bacteria has changed its makeup (antigenic shift) limiting recognition by the patient's immune system.

7. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient's immune response has not been stimulated to produce antibodies, i.e., the blood test is taken too soon after the tick-bite (8-6 weeks).

Please do not interpret this statement as implying that you should wait for a positive test to begin treatment.

8. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the laboratory has raised its cutoff too high.

9. Antibodies against Bb may not be present in detectable levels in a patient with Lyme disease because the patient is reacting to the Lyme bacteria, but is not producing the "right" bands to be considered positive.

Considering that you were not tested by a lab which specializes in tick-borne disease...you would be VERY lucky to have a positive test.....these labs miss up to 80% of Lyme cases. Had your Dr. used a more sensitive lab (like IgeneX) you might have been positive.

[Rpm999]

thanks, what's CD57 though? tried researching and didn't fine anything....in my case, what do you think i should do/look for? because i think ART would be a great idea, but it would surprise me if there was a specialist around here for...i really don't know how they do that testing either so i wouldn't know but since i as well think there's a few things going on, it'd be nice to have an open view and see what effect what's having and all of those tricky things

[truthsearcher]

quick stop...

Carla can I please have Dr. H's contact info and that Cowden protocol info you were talking about with Nixie I think?

I decided to cancel my March apt d/t some bad reviews of Dr. S, so this makes two cancelations from me, not a good record. It's a good thing it's not" 3 strikes and your out"

I haven't heard from Igenex as to the kids blood samples being bad from not having it spun, so..... I'm hoping to hear possibly in a little over a week now....

My dd h/a's are getting worse, fatigue and tummy aches bless her heart. I'm hoping the wait for Dr. H is not too long..... anyone know offhand?

Be Blessed,

Laurie

[CarlaB]

Laurie, I think it's about six weeks. I'll PM you that info.

The limited Cowden protocol I was on was:

Samento 20 drops before bed (ramp up one drop at a time)

Cumanda 30 drops 30 min. before breakfast and dinner (ramp up one drop at a time)

Parsley and Burbur 10 drops three times per day before meals.

[truthsearcher]

Carla,

Did you take your Cumanda with your humaworm? Is this ok?

Thanks for the pm.

[nora-n]

samento, where do you buy it, from the doctor, or in health food shops? Where would i look in Europe? I read some years ago on a thyroid forum that a Dr. white was diagnosing lyme in many thyroid patients that did not get better from taking thyroxine by looking at the blood in an dark field microscope and he sold samento to them. This was in the UK.

nora

[CarlaB]

Carla,

Did you take your Cumanda with your humaworm? Is this ok?

Thanks for the pm.

Yes, I did. I don't know if it's okay though, LOL.

samento, where do you buy it, from the doctor, or in health food shops? Where would i look in Europe? I read some years ago on a thyroid forum that a Dr. white was diagnosing lyme in many thyroid patients that did not get better from taking thyroxine by looking at the blood in an dark field microscope and he sold samento to them. This was in the UK.

nora

www.nutramedix.com I haven't found it anywhere else. I buy it through my doctor, but you can buy it directly from Nutramedix.

[dlp252]

thanks, what's CD57 though?

It's a test that measures something called "natural killer cells". Not all lyme doctors use them, but some do and they can be a good indication of how the infection is progressing. Doesn't always match how someone is feeling, but amongst those who were tested in the OMG thread, the scores seemed to correspond with the severity of our symptoms.