Jump to content
  • Sign Up

Archived

This topic is now archived and is closed to further replies.

Rachel--24

Omg...i Might Be On To Something

Recommended Posts

.....

The Dr.'s are NOT trying to treat this epidemic. The parents need to support each other and start getting the word out as far as what is really working for these kids. McCarthy is doing a good job of this.

I've been reading her book. I have no doubt that it will help alot of other parents who might not know about how much the diet can help their child.

All excellent points. I wonder what it will take for people to recognize this is an epidemic? If it is 1 in 150 now I wonder what will it take?

Thanks for the post Rachel, I bookmarked it.

Share this post


Link to post
Share on other sites
Proteolytic enzymes used to break down fibrin:

When I had my skin biopsy done on a puffy part of my face, the lab report came back as, "mild imflammation and fibrosis"

I wonder if that meant fibrin or something... fibrosis, fibrin?

that was 2 years ago. The derm, dismissed it.

about the fluvic acids, and humic acids, they are only bad if they are contaminated. Since they do bind to metals and pesticides in nature and in the body, they are derived from plants and in soil, and aquatic environments, this is not pure virgin fulvic, its already been bound to minerals and metals, and these are bottled and sold, and injested by humans. That is why on the bottle of my trace came from a source that was contamined, with pesticides, or mercury, or what have you...the salt lake has some areas of mercury, also high in sulfur, and aluminum, espically magniesum. On the bottle it said may contain other elements found in sea water,,,and also it listed arsenic, mercury, uranium, lithium...and over 75 more typical minerals. The scary part is that they were the most bitter, thing I immediately wanted to spit. It tasted like aluminum. Its hard to know weither these companies are putting out a good product considering supplements are not regulated by the FDA.

I didnt have the product tested, I just thew it out, so I guess Ill never know. But I know it was bad batch.

I do recall that the product had chloride in it "purify it" as I recall, and like you said, NOT GOOD.

--that creates a dangerous halogen, polychlorinated biphenyls, endocrine disruptor.

Ive noticed on their website that they have changed how they market it, they no longer list, arsenic, and uranium, on the label! Also I read that they sued Noth Shore Limited, which is the company that gets its minerals off the north sore area in the great salt lake, in Utah. Their supplier for the minerals. I talked to several people at the company and they sounded clueless. I argued that I got sick, and called the FDA. The guy at the minerals company was very defensive said that it was good arsenic, like the kind you find in strawberries, not the bad kind...and the level or uranium was very small,,,I thought he was a moron!

Its impossible to know for sure, what that tainted chemical mixture was, but I am afaraid to take the liquid minerals now, cause I got sick before. Depends on the brand, and the person. Prob some are safe, and it sounds like a promising thing, but its like gluten to me, I wont touch it.

http://www.quackwatch.org/01QuackeryRelate...alminerals.html

this is a good article, written by a geologist, and I tend to agree with most of what he is saying.

Considering Im one of the people who got sick.

heres some links on humic and thyroid disease, it depends on the source, and what its bound to...

Humic substances in drinking water and the epidemiology of thyroid disease.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Environmental signals: synthetic humic substances act as xeno-estrogen and affect the thyroid system of fish.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Induction of oxidative stress by humic acid through increasing intracellular iron: a possible mechanism leading to atherothrombotic vascular disorder in blackfoot disease.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Inhibition of human plasmin activity using humic acids with arsenic.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Metals and organic components of sewage and sludges.

http://www.ncbi.nlm.nih.gov/sites/entrez?D...Pubmed_RVDocSum

Share this post


Link to post
Share on other sites
The remedy sounds interesting and since I have sinus problems I am curious as to what happens after you inject the saline into your nose, grossness permitted here. :lol:

On the saline rinse for the nose: This is a standby because I can't use antihistamines much. For me, I get very congested, so if I put my head back and slowly put in the 10cc, it seems to flow a bit into the sinus and into the other side a little bit. When I am quite congested it doesn't go down the throat much. It it does I expel it like if you gargle.

I do it over the sink, then let it come back out my nose. Then blow good a couple of times. It really really helped with my headache the other day.

Yeah, TMI, but otherwise how do we learn from each other?

The video on the EFT link showed unhealthy blood that was clumpy and then healthy blood that was flowing and after a five minute EFT treatment the person with clumpy blood was retested and their blood was flowing too. The woman doing the test said she felt like she should just through away all her degrees, the minister who developed it offers a free manual.

Thanks to whoever posted it, sorry but I don't remember who.

That was me. ;) That's cool, I didn't look at the video, just got a copy of the manual. EFT is Emotional Freedom Technique. You do tapping on the acupressure points while saying a phrase of affirmation or a phrase representing what you are feeling bad about (could even be a physical symptom).

A professional technique that is somewhat similar is EMDR. Therapists use a side to side stimulus to stimulate right brain left brain connections, because trauma memory is more right side and hard to access from left brain activity. They also have the phrases that are used at the same time, but the technique is quite a bit more sophisticated than this EFT which can be done on your own. (You can learn to do EMDR on yourself a bit too, but only from a therapist.)

Maybe we ought to do our own little research and see what happens if our group here tries it every day.???

Share this post


Link to post
Share on other sites
this is a good article, written by a geologist, and I tend to agree with most of what he is saying.

I've actually never believed anything I've ever read from Quackwatch. I dont even have any interest in what that guy says....EVER.

He is anti - everything that is alternative. And I mean *everything*. You can look up anything that is ever used in alternative treatments and this guy has written an article bashing it.

He is not a reliable source of info. in my opinion.

I dont doubt that some fulvic acid can be tainted....its the same with pretty much everything. Chlorella is another one that binds with metals. Its important to get the brands that are tested and high quality. Even garlic picks up metals in nature. It doesnt necessarily mean we become toxic from consuming chlorella and garlic....these are the things that are actually really beneficial.

Of course...when you're sick you might be highly reactive to something that is "tainted"....but it doesnt mean you will become poisoned.

This has been said about chlorella:

There have been hard-to-substantiate comments about the danger of mercury contamination in chlorella products. One doctor has responded by saying "What the investigators failed to account for was that the binding coefficient of chlorella to mercury is far in excess of its potential to release mercury into the body. It only absorbs mercury; it does not release it into the body."

Its unlikely these things are gonna dump metals into your system but they definately can cause you to react if your immune system is already highly sensitive to the metals.

Share this post


Link to post
Share on other sites

Carla, what a bummer. Donna, sorry about the down time. Hope there is an upturn soon.

Andrea, I know what you mean. I have a hard time keeping up on this thread, so I like the days it is quiet! ^_^

Julie, Donna and I both did detox baths....I think I missed what was happening with Donna when it caused problems. Probably I was out of town. I did it twice, but can't at home because I don't have a tub. I'll try again in a week or so. Seemed to cause a lot of headache and congestion for me, so it really stirred things up. Want to see if it happens again. Maybe I'll put less in the tub.

Rachel I had to skip the autism and lyme stuff for now but hope to come back to it.

Sherry

Share this post


Link to post
Share on other sites

Dear Sherry,

I am amazing? :huh: How come? I try to keep up with everything. It is not always easy! A lot is going on here all the time! We rarely have a slow day in Rachelville!

Those chocolate cookies sound wonderful! I would not mind having some. Cookies are my favorite treat. They always have been. I suppose it is due to feeling you can eat more of them. You see, you only get one slice of pie, or one piece of cake. That is my mentality, and I am sticking to it! ;)

I was looking around last night, and found information on detox baths. The site was for the Northwest Center for Environmental Medicine. There was all kinds of interesting information. They had various recipes for detox baths. Two they mentioned were the baking soda and the epsom salt baths. For the baking soda, they said 1 cup of it to the bath water, and for the epsom salts, 1 to 2 cups. You also were warned not to stay in too long, because the detox reaction could be miserable if toxins were drawn out too quickly.

Congratulations on your grinder! That is a good price. Rice flour can be very granular. Sometimes, you need a smoother texture. It is a good thing you found it!

I agree that an experiment with EFT would be great! I am more than willing to participate. My emotional issues primarily deal with my parents and family, as you know. EFT could help ease some of my misery. The negativity I deal with on a daily basis sure does not help my body any.

Dear Carla,

I am sorry to hear the Bart meds are giving you a tough time. However, that might be a good sign. It sounds like a herx. This means the meds may be working! Hopefully, this misery will pass soon. Having Adam out of town for two weeks does not help, I am sure.

Kassandra probably should be checked for Lyme. As you said, there has to be something causing these hormone imbalances. They do not just develop for no reason. Endocrinologists might be able to help pinpoint something. An LLMD would be best, though.

Speaking of Lyme, I was thinking. My doctor is reluctant to run the tests through IgeniX, because she cannot interpret them. Do you absolutely have to go to New York to see the doctor you see? Is there any way I could pay to have him interpret the results? I need to do something!

Dear Patti,

I had heard Jenny McCarthy's son was autistic. It is wonderful she speaks out about the illness. There is so much lobbying needing done for this cause. Autism seems to be an ignored topic, and more light needs shed on it. Maybe now people will see her as a not so dumb blonde!

I know I am fed up with the medical establishment. Western medicine neglects many aspects necessary for health and healing. Finding the source of the illness is important, otherwise the symptoms are just being treated. This works for a temporary solution, but not in the long-term. It is like doctors believing a 30-day course of antibiotics is all it takes to kill off Lyme. We know that is not true.

Dear Rinne,

I have your poem saved in a Word document! :) I called it Rinne's Poem. There did not seem to be a title to it. Do you have one? Maybe I will find a poem to share and post it soon.

I am definitely still keeping my column in full swing! :lol: It is difficult to stay away from here. This is my thing. At least if anyone is away for very long, they can get updated quickly if need be by reading my post. Sometimes I have to add things later in other posts, because my posts would be way too long!

Yes, it is Rachelville Love Fest time! :D Group hug everyone! Love is such a wonderful thing to share! Rachelville is the most loving place to be! No ill will is allowed in, and Rinne Bars are a good part of that! They are stored in the celebratory yurt in a refrigerated safe.

Dear Donna,

You are probably right. Our friend tom is likely preparing to receive the keys for his new place in SJ! Moving from Phoenix is likely somewhat stressful. I looked for him on the Silly Thread, but he had not been on the last I checked. I am going to check again later.

I have been in a funk lately, too. I do not know what it is. I am either mellowing out a whole lot, or just plain getting lazy. Part of it is my eye strain. Since I have not got insurance, going to the eye doctor is a no-go. I have had the same contacts and glasses for three years.

Those are a lot of neurotransmitters! Surely something will show. You are probably anxious to get the results. That ALA may have something to do with the mess, too. As Rachel said, that can add to your funk. Keep us updated!

Dear Kassandra,

I have very thick hair, and am not going bald, but losing a lot of it does worry me. My thyroid is off I am sure, but the tests did not show it. If you want to hear something scary, I have mutant hair. It is starting to grab pens off of the table and throw them in the floor. The hair always manages to get in strange places, too. My brother said my hair is like The Blob!

I know exactly what you mean! I am like "What the hell is wrong with me now?" You wonder how so many things can be wrong with a single person. Why do we have to be sick, and go into one thing after another? This is overwhelming at times.

Lyme is something I desperately want to get tested for. You are lucky enough to have LLMDs near you. Go for it if possible! Letting it go will only make things worse. If you have it, treating it now is best.

Dear Julie,

Neti pots are supposed to be great for sinus and allergy problems. I thought about getting one. I used to have a humidifier in my room. It steamed. Saline rinses can work wonders for people, too. They are so simple, but can prevent sinus infections and congestion as well as colds.

Oregano oil is often caustic to the skin, as are many spice oils. It typically burns upon application. That is why the insides were a concern to me. Janet tried it, and it gave her stomach problems. :( She felt really bad, and was not sure if it was from Candida die-off or what.

Angioedema sounds related to so much of what Rachel posted! Autoimmunity tends to be associated with underlying pathogens. Viruses and bacterial infestations particularly pave the way for trouble. They can lie dormant for years. Suddently, a cold could activate it. Celiac has that in common with many other illnesses.

Dear Judy,

Recovering from trips can take a while. Many people seem to need a vacation from their getaways! :lol: By the time people get back from relaxing, they realize they are exhausted! I would just sit around on the beach. Now that is relaxing. You can hear the waves crashing, and the seagulls.

Oxalates are very fascinating. I need to read more. The diet seems to be very helpful for a lot of people with chronic pain. I am amazed at how you have done without them. Who cares what the doctors think? It works!

We have to face patients must be their own doctors and advocates now. All of us waited and suffered for years. Finally, we got tired of paying these morons to sit on their butt, collect a week's worth of pay and tell us they just think we are lunatics. With as much as I have paid out, they should be paying me for their office space! I probably own that stupid building by now!

Dear Ami,

Toxins coming out might be why you are getting nostalgic feelings. Emotional issues seem to come to the surface more during detox. Chelation often spawns this in people. Klinghardt appears to have a handle on it. His axiom makes plenty of sense. Healing energy cannot be produced by negative thoughts.

Dear Laura,

I am glad to see Happy Spice on here again! What wonderful news! The medications are helping! :) I hope you are not running yourself ragged. Make sure to rest properly and take some time out for yourself!

Dear Rachel,

Wow, I really need to copy all of that Lyme and Autism information! So much scientificness, I have no idea where to start! It is good more physicians are noticing the connection between heavy metals, pathogens, gluten, casein, Lyme, and autism. Few people discuss it. The few who do are often unmercifully scrutinized.

That is a relief about fulvic acid! How scary that it can be dangerous when consumed with chlorine? If you take it, and have not got a chlorine filter in your shower and bathe, could that give you skin cancer? Or do you have to only consume it?

I would assume since your skin is the largest organ of the body, that it could have the same effect since you will absorb more of it that way. Fulvic acid seems very safe otherwise.

ALA definitely could redistribute metals if not taken with a chelator. You cannot draw anything out without one. Metals will get stirred up. That is all. I do not think I would ever take it without a chelator.

I saw them bashing Dr. Pinkus that does the Nu-Zymes on Quackwatch. It made my mad! I really believe that food enzyme are a huge problem for many people. So many benefit from them, because their body needs them. I know your system did not tolerate them, but feel the site is bashing alternative therapies in general. Some people just refuse to accept truth, no matter how much proof there is.

I am glad you listed the fibrin breaking-down substances. That is good to know. Sticky blood seems to be an issue for many of us. I have noticed my blood smells metallic. Is that normal? I have a bad feeling it is not.

Dear Andrea,

I wonder if funks are catching? Maybe I caught some of Donna's after she caught yours from earlier this month. It is so strange how those things are. They just come out of nowhere. Part of mine is just feeling stir-crazy about being stuck in the house so much.

I think it was wise not to use your grinder after it had been used for gluten. If only those things were easy to deglutenize. I am trying to debate whether I should put my mandolin slicer pieces in the dishwasher or not. They were in a box and got dirty. I am not sure washing them by hand will get them clean enough.

This also brings me to the conclusion that putting stuff in boxes for moving does not keep things in good condition. You see, my mandolin slicer was put in there originally for when I moved out. Since that did not look like that was happening anytime soon after things being packed away for more than two years, I thought I might as well take it out and use it. Shredding the cabbage for my spring rolls particularly will not be easy. My mandolin slicer could help. We will see!

Dear melmak5,

Doctors have told me some pretty lousy things to help me as well. Peppermint tea was never one they suggested to me, though. They prescribed pills. Lots and lots of pills, which did absolutely no good whatsoever. One was recalled, and some of the others have been found dangerous now.

I am glad you tolerated the ginger tea. If you can keep it up, go for it! One thing you do not get sick from is certainly worth keeping. Why mess with a good thing? Do what works.

I would not mind a new body, either! :lol: I was thinking more along the lines of Ghost in the Shell: Stand Alone Complex. It is an anime series after the singularity. The singularity is when man and machine combine. Some people have full prosthetic bodies, and even have cyberbrains! It is really neat!

Those hives do not sound fun at all! They can be caused by various things. Everything from the food you eat to skin products you use can result in them. I actually have a similar issue where I can eat things as long as I do not eat them in consecutive days. Once, I ate beans for two or three days in a row and was fine. Then, on the fourth day, I got very sick after eating them.

A rotation diet would probably help with that. This prevents new allergies from forming. Another thing is, it helps identify additional sensitivities. Optimal nutrition is acheived this way. It is better to be safe than sorry. It is difficult enough being gluten and/or casein-free.

Dear Christina,

Thank you for the links! They are very interesting. How awful about the bad batch of the supplement you got! Thank goodness you are alright! If it tastes like poison, it may very well be!

You may not know this, but natural arsenic is actually not dangerous. It is synthetic or chemically altered arsenic that is bad for us. If it comes from polluted waters, that would explain it being poisonous. Someone on the forum is a marine biologist or something like that, and they told me about how the body actually needs arsenic. The thing is, it must be natural.

Sincerely,

Jin

Share this post


Link to post
Share on other sites
On the saline rinse for the nose: This is a standby because I can't use antihistamines much. For me, I get very congested, so if I put my head back and slowly put in the 10cc, it seems to flow a bit into the sinus and into the other side a little bit. When I am quite congested it doesn't go down the throat much. It it does I expel it like if you gargle.

I do it over the sink, then let it come back out my nose. Then blow good a couple of times. It really really helped with my headache the other day.

I swear by sinus irrigation. I've not used a neti pot, although I'm really tempted to get one.

I use an ear syringe. I fill it with a cup of warm water mixed with a half teaspoon (I don't measure) of sea salt. I gently squirt the solution into each nostril with my head straight, over a sink. Always blow your nose gently afterwards.

The solution flows out the other nostril and a little bit sometimes goes down my throat--but not much. It's great for postnasal drip, congestion, sinus infections and allergies.

I can use antihistimines, but not decongestants due to high blood pressure. This works very well, has no side effects and can be done as often as needed.

I am definitely still keeping my column in full swing! :lol: It is difficult to stay away from here. This is my thing. At least if anyone is away for very long, they can get updated quickly if need be by reading my post.

Don't know what I'd do without "Jin's Rachelville Digest" :lol:

I hope everyone comes out of their funks soon--those are no fun :(

Share this post


Link to post
Share on other sites

Dear Patti,

ROTFLMAO! This will make you laugh. Much of the time, after I read the thread, I go upstairs and write down all I remember after tapping my memory buttons on my head. Normally, after I write it all down, I head it "Today In Rachelville!" It is almost like our own newspaper! Who knows? That could be next!

I hope we all get out of our funks soon, too. Sometimes I think I have been born into one.

My entire family is probably crazy. My brother often wonders the same thing I do. That is, "How on Earth could I be related to these insane people by blood?"

Sincerely,

Jin

Share this post


Link to post
Share on other sites

Jin--

That is too funny--I wish I had memory buttons on my head--or maybe I do but they don't work as well as they used to :lol:

Family can be frustrating--luckily, we have a 300 mile "buffer zone" ;) If I had to deal with them all on a regular basis, it would be a whole 'nuther story :D

Share this post


Link to post
Share on other sites

Yep, Jin's Rachelville digest---that's why you are amazing! I get to the end of all the posts and and can't remember the ideas I had along the way.

Detox bath: I used equal sea salt, epsom salts and soda, and just 1/2 c of the total mixture. I timed 20 minutes and then rinsed off. I think I will try it again, and if I get all stuffy again, I'll just do 1/4 Cup of the mixture.

Kassandra, I agree about the lyme test, I think it is very important for any of us who have a mixture of symptoms. Also the heavy metals.

If you doctor doesn't know how to interpret, can't she consult with an LLMD? That seems an odd reason to not test.

Share this post


Link to post
Share on other sites

Treats: Okay, I know we are trying to be low carb, but....

Besides the chocolate cookies and the molasses ones that are successes, today I finally think I have found a cinnamon roll recipe that is good, about the 4th one I have tried. Still tweaking but I think this is going to be a winner. GFCFSF.

Share this post


Link to post
Share on other sites

The funk persists. <_< One of my friends (a very sweet elderly lady from church) stopped by last night and I wouldn't even let her come in! :( I haven't cleaned my house in months, and it was after 7:00, which is nearly my bedtime, lol, and I wouldn't let her in. I feel HORRIBLE about that. This is one special lady to me, and I wouldn't let her in. :( That brought on a crying jag. Talk about stirring up emotions, lol.

Julie, Donna and I both did detox baths....I think I missed what was happening with Donna when it caused problems. Probably I was out of town. I did it twice, but can't at home because I don't have a tub. I'll try again in a week or so. Seemed to cause a lot of headache and congestion for me, so it really stirred things up. Want to see if it happens again. Maybe I'll put less in the tub.

I had a problem with how long I stayed in. I stayed in for probably around 15 minutes (maybe more) and I felt so weak and almost nauseated that I had to get out right away. I think I make mine pretty strong, so it makes sense that I wouldn't be able to stay in for long. I may try cutting down the amount and see if I can stay in longer.

And, OMG, your treats sound WONDERFUL, lol. I LOVE cinnamon roll, lol (okay, and chocolate cookies too) :P

Share this post


Link to post
Share on other sites
Speaking of Lyme, I was thinking. My doctor is reluctant to run the tests through IgeniX, because she cannot interpret them. Do you absolutely have to go to New York to see the doctor you see? Is there any way I could pay to have him interpret the results? I need to do something!

Here is a link to the Igenix site explaining the tests...you can take this to your doctor. But, you can also just order the tests and post the results here and/or over at LN:

http://www.igenex.com/labtest.htm

and this is copied from a post at LymeNet:

Posting this, written by Dr C of Missouri for the benefit of everyone. This was written around 1999 or 2000. There is an updated version below.

Please note that "equivocal" is the same thing as "IND" or "indeterminate."

-------------------------------------------------

Explaining Borreliosis (Lyme) Western Blot Tests

The Western blot is a type of test that is conducted for detection of borreliosis (Lyme), but is also used to test for infections other than borreliosis.

Borreliosis is a more accurate name than Lyme disease for this infection. Several different Borrelia may cause a similar clinical pattern in this disease.

Old Lyme is a town in Connecticut, not a disease. Borreliosis is the name that should be used.

There is no universal agreement on what defines a positive Western blot.

Good laboratories use different criteria to interpret borreliosis blots. At the 1999 international borreliosis and tick-borne infection conference, Sam D****, M.D. lectured.

Dr. D**** is a full professor of Infectious Disease at Boston University School of Medicine. He said that if a patient has just one borreliosis-associated antibody on their Western blot, you may assume they have borreliosis. Richard H*****, M.D. said the same thing in his lecture, at that same conference.

Research I presented in 1998 involving over 400 borreliosis patients, showed an 87% response rate to antibiotics. This was if they had one borreliosis-associated antibody on their blot.

So if there is enough suspicion that Lyme borreliosis is the cause of a patient's symptoms, so much so that a Western blot is ordered, then if only one borreliosis-associated antibody is found, it is significant!

Medical literature is replete with statements about false positive test results for Lyme borreliosis. Since 1988, I have diagnosed and treated well over 600 borreliosis patients. Only 2 of those patients with a positive borreliosis test did not respond to antibiotics. This is a 99% success rate!

So in the trenches of day-to-day medical practice, false positive borreliosis tests are not an issue. In retrospect, those 2 patients that did not respond to antibiotics may have also had babesiosis.

In my practice, many borreliosis patients also have babesiosis, another tick-borne infection that causes the same symptoms as Lyme borreliosis.

Babesiosis is caused by a protozoa, which is a different germ type than a bacteria, virus, fungus or yeast.

The placebo effect would not explain a 99% response rate. Those borreliosis associated antibodies should not be there, in patients with symptoms.

A placebo is like a sugar pill, that has no effect. A placebo effect occurs because patients believe in the pill they are taking, even though it is a sugar pill. The human mind causes the response. Placebo effects should more likely be about 20-30%, not a 99% response rate.

False negative test results are the real problem in diagnosing borreliosis. Research has shown that you have to do the right test (the Western blot), done at the right laboratory (one that specializes in testing borreliosis), and done the correct way (shipped express delivery early in the week).

The right test to screen for borreliosis is the Western blot. Research I presented in Bologna, Italy in 1994 at the international borreliosis conference showed this.

Other screening tests, such as the IFA, EIA, ELISA, and PCR DNA probe were often negative when the Western Blot was positive!

Other doctors like myself who diagnose and treat a lot of borreliosis patients, go straight to the Western blot as their screening test.

Medical articles abound stating that it is best to do a screening test, such as an ELISA, and if it is positive, then confirm it with a Western blot.

But the ELISA is often negative when the Western blot is positive so, the right test is the Western blot.

It lets you see exactly which antibodies are present. The "right laboratory" means one that specializes in borreliosis testing.

In the past, I have done head to head comparisons with 3 different regular labs. Western blots were drawn and sent on the same day to 2 different labs.

The labs that specialize in borreliosis testing typically found borrelia-associated antibodies, that the regular laboratories missed.

If these specialty labs find a borrelia antibody, I trust it to be significant, because patients respond to antibiotics.

You get what you pay for, so use a lab that specializes in borreliosis. The right way to process the Western blot specimen means for the blood to be drawn and express mailed early in the week.

Research shows the borrelia antibodies have the potential to clump together, resulting in false negative test results. So far, unclumping has not been practical for laboratories to do.

The fresher the specimen, the more accurate the test results. Patients at our office are scheduled Monday, Tuesday, or Wednesday if testing is to be done.

This way, express shipping will assure that the specimen does not spend the weekend sitting at the post office. This is the right way to test and ship borreliosis specimens.

Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called Borrelia burgdorferi, and other Borrelia species.

In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria.

Compare it to the old story of different blind people touching an elephant. Based on the part of the elephant each one touched, each person had their own perception. Likewise, the antibodies attach to different and specific parts of Borrelia burgdorferi.

Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons.

To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the numbers, 18 through 93, on the test result form, is a part of the bacteria.

Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.

Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot.

If there are any antibodies against parts of Borrelia burgdorferi present in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part.

When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter.

In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.

If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. - Band intensity reflects how dark or wide it is. Controversy exists about band intensity.

Many would say the " +/-" equivocal ["IND"] bands are not significant. The problem I have with that, is that there are "-" negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.

The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.

Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics (usually tetracycline, 500 mg, 3 times a day), will convert a negative or equivocal Western blot to positive in about 36% of cases.

As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics.

Sometimes multiple antibiotics have to be tried before the patient feels better. Antibiotics may actually help with the laboratory diagnosis. But patients need to be off antibiotics about 10 to 14 days before the Western blot is repeated. This sounds like a contradiction.

Antibiotics may help convert the test to positive, but patients need to be off antibiotics when the specimen is drawn.

It is well documented in medical literature that the presence of antibiotics may cause false negative borreliosis testing. Therefore, your system should be free of all antibiotics for an accurate blot result.

When the Lyme borrelia are alive, they are geniuses at avoiding the immune system. They may do things like go inside your white blood cells, and come out enclosed by the cell membrane of your own white blood cells! This may partly explain why antibodies against Borrelia burgdorferi are often not found when patients are tested.

What may happen when patients are given 4 weeks of tetracycline (or other antibiotics) is that some of the bacteria die. When Borrelia burgdorferi dies, it is less efficient at avoiding the immune system.

That's when antibodies may be formed against Borrelia burgdorferi, converting the negative or equivocal Western blot to positive, in about 36% of cases.

If a borreliosis Western blot is going to be positive, it is usually the first one that is positive. The second blot is the next most likely to be positive, and so on, until the fifth blot.

After that, the curve levels off for conversion to positive. This is based on research I presented in Bologna, Italy in 1994. Some patients had borrelia-associated antibodies finally show on their tenth Western blot! Two Western blots from a reliable lab usually gives the answer.

If a third test is needed, a Lyme Urine Antigen Test (LUAT) is done instead of a third Western blot. Positive LUATs correspond very highly to patients getting better with antibiotics.

False positive LUATs have not been a problem in my practice. The LUAT finds the actual antigen (Borrelia burgdorferi itself), so arguably it should be the test of choice, but the Western blot is rn6re widely accepted, even though it looks for the antibodies against Borrelia burgdorferi.

The presence of antibodies are indirect evidence of an infection, not direct evidence like shown in the LUAT. On the Western blot test result form, please note what is "considered positive" and "considered equivocal." Equivocal is another way of saying suspicious or almost positive.

Below this are the ASTPHLD/CDC recommendations. The CDC stands for the Center for Disease Control. I have been in attendance at the international borreliosis conferences when the CDC said their recommendations are for disease surveillance, not day-to-day clinical medical practice. I am not in the business of disease surveillance. My job is to try to help sick people.

The CDC recommendations do not include the 31 and 34 Kda bands of the blot test. These two bands correspond to outer surface proteins A and B respectively (ospA and ospB).

In the world of borreliosis, these are two of the classic hallmark Lyme antibodies. But the CDC does not even have them in their recommendations.

You may see why I and other borreliosis clinicians do not agree with using the CDC criteria in everyday medical practice. Other bacteria besides Borrelia burgdorferi may produce the 45, 58, 66, and 73 kDa bands.

These bands may be produced by Borrelia burgdorferi, but are not nearly as specifically associated with Lyme borreliosis as the starred bands. These starred bands are classic hallmark borrelia-associated antigen-antibody complexes.

An example of the CDC's criteria of a blot test, is if a patient has the band pattern of 41, 45, 58, 66, and 93, the CDC would call it positive. But if a patient has a 23-25, 31, 34, and 39 band pattern, they would call it negative.

This is despite the fact that this second pattern of antigen-antibody complex bands is much more specifically associated with Borrelia burgdorferi than the first pattern.

As you can see, borreliosis is very controversial. It would be alarming if I was the only clinician who thought that the CDC recommendations should not be used for day-to day medical practice.

Many borrelia clinicians do not use the CDC criteria. This is obvious by the fact that the IgX laboratory uses different criteria for positive. Again, in my opinion and others', even one borrelia-associated antibody is significant, if symptoms exist.

The classic triad of symptoms for borreliosis is fatigue (tiredness, exhaustion), musculoskeletal pain (joints, muscles, back, neck, headache), and cognitive problems (memory loss, trouble concentrating, difficulty remembering what you read, depression, disorientation, getting lost).

But there are about 100 symptoms on the borreliosis questionnaire I use. Borreliosis may mimic or imitate virtually any disease.

Patients often tell me that other physicians they have seen use the CDC recommendations. This is unfortunate, in my opinion, since these physicians are not in the business of disease surveillance, like the CDC is.

But I am biased. After seeing patients with borreliosis since 1988, attending many conferences, talking with experts, and doing research on borreliosis testing, there is absolutely no question in my mind that physicians need to not blindly accept any recommendations.

One of my hopes is that doctors will someday realize that this controversy is a signal for them to search for the truth. Why is there such conflict in this very "political" disease if there is not substance for disagreement? Both IgG and IgM Western blots should be done for borreliosis.

With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM. In regard to the outer surface proteins, think of it like the skin of a human.

On the outer surface of the Lyme bacteria are various proteins. As they have been discovered, they have been assigned letters, such as outer surface proteins A, B, and C.

The following is a brief explanation of the test results. Again, each band is an antigen complexed (bound together) with an antibody made by the immune system, specifically for that antigen (part) of Borrelia burgdorferi.

18: An outer surface protein.

22: Possibly a variant of outer surface protein C.

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

28: An outer surface protein.

30: Possibly a variant of outer surface protein A.

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

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

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

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

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

58: Heat shock protein.

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

73: Heat shock protein.

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

93: The DNA or genetic material of Borrelia burgdorferi.

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.

This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).

At the international borreliosis conference in Vancouver, British Columbia, I asked her personally about the 30 kDa band. She told me it was the same as the 31 kDa band (osp A).

When you have the opportunity to talk to borreliosis experts, this helps in assigning significance to findings, on an imperfect test. As a medical doctor, I am stating all of this with no axe to grind, no professorship to protect, and no preset opinions. Patients, personal research, and conferences have helped me interpret the borreliosis medical literature in regard to testing.

Nobody would like to have available a bullet-proof, 100% reliable Lyme borreliosis test more than I would. But we must use what is currently available. I always welcome second opinions.

----------------------------------

Here is his update written sometime around 2005.

When physicians do consider borreliosis, they often start with a screening test such as an EIA, ELISA, IFA or PCR-DNA probe. If the initial screening test is negative, many physicians tell patients they do not have Lyme borreliosis and the testing is stopped right there.

Screening tests that are positive are often followed by a test called the Western blot. The blot is a

Share this post


Link to post
Share on other sites
Speaking of Lyme, I was thinking. My doctor is reluctant to run the tests through IgeniX, because she cannot interpret them. Do you absolutely have to go to New York to see the doctor you see? Is there any way I could pay to have him interpret the results? I need to do something!

The thing about diagnosing Lyme is that the testing is just a support of the diagnosis. You are diagnosed based on symptoms with the support of a test that shows Lyme specific bands. Many with chronic Lyme actually have negative tests due to an overload of their immune system, which causes antibodies not to show up.

If you got an IGeneX test, you could post the results on Lymenet. There are people there who understand the testing better than your doctor probably does.

You have to go to NY to see my doctor. It's unethical for a doctor to test you and then not treat you right away in the face of a positive test. I had asked about doing this for Chloe ... him ordering the test, then bringing her up if it was positive. Once they put it like that, I understood. It's unethical to make you wait for treatment if you have a disease, and the wait is long to get in to see the doctor.

Share this post


Link to post
Share on other sites

Thanks Patti...I am cutting the amount of ALA I take in half today to see if that lightens things up at all.

Share this post


Link to post
Share on other sites
Besides the chocolate cookies and the molasses ones that are successes, today I finally think I have found a cinnamon roll recipe that is good, about the 4th one I have tried. Still tweaking but I think this is going to be a winner. GFCFSF.

I'd love to see the recipes if you don't mind sharing. :)

Donna and Rachel thanks for the informative posts.

Donna,

Hope cutting the ALA helps you out. Sorry about your friend from church. I'm sure she understood. Hugs. :wub:

Jin,

Why wouldn't the mandolin by safe in the dishwasher?

Share this post


Link to post
Share on other sites

Hello everyone :D

Sorry to hear you're struggling Donna. I've been in a pretty rubbish way too, and not felt at all like posting. I got very depressed, and my diet's gone completely out of the window. I find it really difficult to eat a restrictive diet when I get depressed. Eating junk seems to be my way of coping :angry: <sighs> not sure how I'll ever be able to sort out my food problems at this rate as this always seems to happen when I go on a restrictive diet.

On a happier note though, my sister gave birth at lunchtime today to a healthy 8lb 3 girl :D The only pain relief she had was TENS. I'm so proud of her :D

Also, last Saturday, we decided to indulge in the great British delicacy of fish and chips (proper English chips, not crisps lol :lol: ). In the next town to us there's a chippy with a dedicated gluten free fryer, which means there's one place I can be guaranteed to be able to eat without getting glutened :lol: (of course I was potatoed lol but it did make me feel very happy!).

Any thoughts about how to eliminate food problems and cope with depression at the same time would be appreciated. I'm definitely not going back on ADs though, as they made me soooo poorly.

One final thing...I have't felt up to reading all the posts, sorry, but I did pick up what Rachel said about the candida diet and limiting carbs, which was very interesting. Thanks! :)

Susie x

Share this post


Link to post
Share on other sites

Hi everyone!

Wow it's hard to catch up from a couple days off!!

So sorry to see so many having a rough time.

JUDY! THE INCREDIBLE SHRINKING TUMOR!! FANTASTIC! :):):)

My little problem was just emotional. It's a very rare situation to find myself in, tho I did realize in June that I was suddenly a much more emotional person than I ever expected to be.

Since becoming mostly well in June, I'd dealt w/ the regret and "what might have been" scenarios a few times. Like I said, it was all speculation until mom's call the other day. It made it seem more like "what would have been".

Anyway, I thank so many of you for your positive comments. :) They are appreciated.

W/ so many serious physical health issues going on here, I partly wish the call hadn't come while I was in the thread. I should just be thankful that all the years of illness seem to be over (knock on wood). :)

I think for the very 1st time in my life, I can say I "needed time to process".

I'm tellin ya, I've been hangin around these threads so much, I might be turning into a chick!! :lol:

Last week, no doubt about it, was also the very 1st time in my life, I actually understood the phrase "a good cry". Such a foreign concept to me. (Quoting myself now - from http://www.glutenfreeforum.com/index.php?s...38354&st=15 ) It was about "the thought that neither of my brothers (we lost them both, the 2nd a yr ago, for ne1 new-ish) ever got to know the me that celiac kept locked away for 35+ years. Didn't see them enough during the braindead & joyless yrs and now that we'd enjoy each others' company SO much, it'll never happen."

It doesn't have to be a long cry to count does it? Just a minute, minute & a half, counts?

BTW, I fly to San Jose tomorrow night for the Saturday move-in (yay!!!!!!!!!!) and stay 11 days. The timing for using a POD for the move wasn't going to work this month, so I'll be back in Phx in Oct for most of the packing. Ugh the packing goes so slowly w/ this back.

I *really* like the POD tho, as opposed to driving a big ole truck again. It's an 8 or 9 day turnaround instead of just 3 w/ a truck, but it seems sooooooooo worth it.

Share this post


Link to post
Share on other sites

Susie,

I was starting to feel depressed also, just because there is ALWAYS something else going on with my health. My mom was told to take salmon oil, and it seemed to really help. If you're really vigilant about taking it, it does make a difference. It also helps with "brain fog."

Congrats on the birth of your baby niece!! :D

Kassandra

Share this post


Link to post
Share on other sites
I'm tellin ya, I've been hangin around these threads so much, I might be turning into a chick!! :lol:

:D A chick! :D

Tom, It's good that you can let it out. I think that now that you're feeling better physically, the old feelings and the what if's that you couldn't deal with before and missed out on are bound to come to the surface. Personally, I think it's all part of the healing process.

I had a lot of that last year, so I understand exactly where you're coming from. ;) When these things bubble back up--they come on hard!

It was good, I think, that you were here when you got the call. We can all relate in one way or another. And remember that your pain is just as serious and important as anyone's! It's yours :)

Jeesh--good luck with your move. We have to be out of here on the 29th of next month--and as of today have not found another house :o If we don't get our butts in gear and make a decision, we may end up on Judy's doorstep :lol:

Share this post


Link to post
Share on other sites
Jeesh--good luck with your move. We have to be out of here on the 29th of next month--and as of today have not found another house :o If we don't get our butts in gear and make a decision, we may end up on Judy's doorstep :lol:

I'm sure Judy wouldn't mind. :D

I need to call you.........I keep getting busy or it's not a good time to call when I think about it. :)

Share this post


Link to post
Share on other sites
I'm sure Judy wouldn't mind. :D

I need to call you.........I keep getting busy or it's not a good time to call when I think about it. :)

I know! :) We really need to catch up....

It's been nuts here lately. They're doing the home inspection tomorrow. I'm not looking forward to that at all--we were told it could take 3-4 hours :blink:

.

Share this post


Link to post
Share on other sites
Guest
This topic is now closed to further replies.

×
×
  • Create New...