Omg...i Might Be On To Something

[AndreaB]

Rachel,

Thanks for always taking the time to post about your appointments.

I for one really appreciate it and enjoy reading about them.....and/or talking to you.

I so excited about all this for you!

Laura,

I'll be waiting for you to post about your appointment tomorrow. Hopefully this will be one of the good doctors.

[covsooze]

Rachel -

I'm sure you probably explained this pages and pages ago, so sorry in advance for asking - what does the bioset treatment involve? Are they testing to see what you've got problems with or trying to remove those problems?

I second Andrea's thanks for explaining about your appointments. It's so so helpful

What is the plan for dealing with your problems with molds? I react to them too and don't really know what to do about it. How do you store your fruit and veggies? I had some grapes yesterday that didn't look moldy plus I washed them but some of them tasted moldy. I'm feeling cr*ppy today - don't know whether it's to do with the grapes.

My dietician has worked out a plan for me for my elimination diet. roll on the new year!!

Susie x

[Fiddle-Faddle]

Susie, I don't know if you are already doing this, but when I wash grapes, I put one drop of dish soap (I use Dawn, don't know if they have that in the UK) in the water and i scrub a littel with my fingers. Then I rinse, really, really, really, really well.

That seems to make a huge difference in taste compared to just rinsing with water.

[Fiddle-Faddle]

Rachel,

Thanks for always taking the time to post about your appointments.

I for one really appreciate it and enjoy reading about them.....and/or talking to you.

Me, too! Me, too@

I am so grateful for all the information. I have no Lyme symptoms (other than the gluten intolerance thing) that I know of, so no point in even asking for a test, but I wouldn't be surprised if I develop them down the road, as I grew up going to summer camp and having lots of bug bites, and I even had a case of cellulitis that started with a bug bite (in Massachusetts!), so I figure I'm high risk. Luckily, I was put on an IV of antibiotics right away, so maybe that caught it it early.

[dlp252]

I already know I'm allergic to molds...highly allergic. That showed up on my initial scratch test 4 or 5 years ago, and it showed up again when we retested last year, still at high levels. That's why my original ENT alway thought I had a candida issue, well that, and the fact that he prescribed TONS of antibiotics for me.

I'll be so interested to see what the bioset thing says about molds for me, lol.

And, I just want to say to EVERYONE that I'm thankful you all post your appointment info and results. I'm hoping much of it is getting stored somewhere in my fogged brain. I may or may not have an issue with Lyme...it would explain a lot, but reading everyone's stuff is helping me in other ways regardless, so it almost doesn't matter if I have it or not. Same with the mercury stuff, which I'm sure I DO have an issue with.

Well, I woke up at 1:00 a.m. again...but this time I waited until 2:00 to start coughing...coughed for about 30 minutes, then just layed there thinking about sleep, lol. Eventually I dozed off again, but don't feel very rested right now. (Course it's 6:40 a.m. (and I've already been up for a while) on a day where I don't have to work, so what does THAT say, lol.)

I'm undecided if I want to make my morning trip out to the grocery store or to Safeway for gift card for my mom...decisions, decisions....don't think I can do both, but what I don't do today, I have to do tomorrow, ugh, lol.

This afternoon I have a chiropractic (and PT??) re-evaluation.

[dlp252]

So I just looked at HOW much of each antibiotic I'm taking, lol. I'm taking 1000 mg of Biaxin (clarithromycin) and 500 mg of Amoxicillin, both TWICE a day, lol. Now THAT should take care of whatever is going on in my head, lol.

[CarlaB]

So I just looked at HOW much of each antibiotic I'm taking, lol. I'm taking 1000 mg of Biaxin (clarithromycin) and 500 mg of Amoxicillin, both TWICE a day, lol. Now THAT should take care of whatever is going on in my head, lol.

I hope it doesn't kill everything in your head!!

Rachel, interesting about the appt. I can tolerate a little bit of peanuts or peanut butter occassionally, but not too often. I'm allergic to mold, too. Makes it easy whenever we've bought a house, I can tell if there's mold as soon as I walk in the door ... makes my eyes itch and my nose run.

[dlp252]

I hope it doesn't kill everything in your head!!

Ha, that was TOAST a long time ago, lol.

[AndreaB]

So I just looked at HOW much of each antibiotic I'm taking, lol. I'm taking 1000 mg of Biaxin (clarithromycin) and 500 mg of Amoxicillin, both TWICE a day, lol. Now THAT should take care of whatever is going on in my head, lol.

Get thee to the store! If you haven't left yet.

[Rachel--24]

Rachel -

I'm sure you probably explained this pages and pages ago, so sorry in advance for asking - what does the bioset treatment involve? Are they testing to see what you've got problems with or trying to remove those problems?

I second Andrea's thanks for explaining about your appointments. It's so so helpful

What is the plan for dealing with your problems with molds? I react to them too and don't really know what to do about it. How do you store your fruit and veggies? I had some grapes yesterday that didn't look moldy plus I washed them but some of them tasted moldy. I'm feeling cr*ppy today - don't know whether it's to do with the grapes.

My dietician has worked out a plan for me for my elimination diet. roll on the new year!!

Susie x

Susie.....heres a link for an explanation of Bioset.

Open Original Shared Link

I go for testing/treatments twice a week. They are trying to eliminate all my sensitivities, get my body detoxing, strengthen my immune system, improve my digestion...stuff like that. I have ALOT going on with me. I react to almost everything.....foods, chemicals, molds, etc. I'm highly toxic.

The Bioset lady I see is supossed to be the best in the country for getting people better from multiple chemical sensitivities.....so my Dr. sent me to her a couple months ago.

I dont have to worry about storing my fruits and veggies because I dont eat any.....except apples. I get way worse trying to eat fruits and veggies....I only eat 5 things right now....apples or applesauce is one of them.

Grapes can be problematic for lots of reasons.

1. molds

2. sulfites (most grapes are sprayed with sulfur dioxide)

3. salicylates (natural occurring chemical in certain fruits and veggies....some people are intolerant)

4. MSG (grapes can be sprayed with Auxigro...which is 30% glutamic acid or MSG)

I have problems with ALL of these....so I just dont eat grapes at all.

[happygirl]

x

[happygirl]

x

[DingoGirl]

Grapes can be problematic for lots of reasons.

1. molds

2. sulfites (most grapes are sprayed with sulfur dioxide)

3. salicylates (natural occurring chemical in certain fruits and veggies....some people are intolerant)

4. MSG (grapes can be sprayed with Auxigro...which is 30% glutamic acid or MSG)

I have problems with ALL of these....so I just dont eat grapes at all.

Rachel - (forgive me, another drive-by),

You know, I think I am reacting to grapes now, too.....there is defnitely an intestinal difference the next day. Strangely, however, I don't have any reaction to wine. Rather confusing.

Hi everybody! one day I'll catch up with all this......hey, how about this, somebody (Andrea? ) should write a Cliff's notes summary about every......20 pages or so......

[Rachel--24]

Laura,

The results are negative by CDC and also by Igenix criteria. If the 39 band was (+)....instead of IND.....then the results would be positive.

The 41 and 58 bands arent specific for Lyme...could be any bacteria with those. I'm not sure about 30...as far as how significant it is. I've seen conflicting info. about whether band 30 is specific for Lyme or not.

I dont think the results can give you an answer. Did you say you saw an LLMD today?? I'm curious what she said. Remember that Lyme is a clinical diagnosis....there is not always a definate answer in the testing. If you're like me though....you want more definate PROOF....to *absolutely* rule it in or out. Thats what I'm dealing with right now.

The 41 band is positive on nearly everyones results.....it is the "flagella" or "tail" of the bacteria. Problem is that lots of bacteria have a flagella....so its not specific for Lyme by itself. The 39 band IS highly specific for Lyme. If you have a positive on that particular band than there is no question you would have Lyme. 41 and 39 together = Lyme Disease.

I dont know how far you wanna go to rule this in or out but you could do an antibiotic challenge to see if the 39....or any other bands...go positive.

I'll be back later to read what the doc said.

[AndreaB]

Laura,

Thanks for posting your results. So, according to what Rachel said you have bacteria but not necessarily lyme (although it could be).

That's about as confusing as mud isn't it?

Very curious as to what your doctor said.......

[CarlaB]

Laura, sorry it's not a clear answer. Like Rachel said, if 39 was +, it would be positive. You might want to do the antibiotic challenge to rule it out at least.

If 41 isn't necessarily from Lyme, then I wonder if it indicates another bacterial problem. I've never heard this addressed in anything I've read.

[rinne]

I brought mine to Bioset last night. She looked at it and said "You better start out slow". She tested it and said "2 drops....thats it."

I told her it says to take one drop and then slowly increase. She said "yeah....you can increase after a couple days...increase to 2 drops a day." I asked how many days I should stay on only 2 drops??

She was like "Ummm.....indefinately....thats all you can handle...2 drops."

How the heck am I gonna kill anything with 2 tiny drops??

Rachel, I've read instructions for taking 1/4 of a drop of Samento to start out with for those who are very sensitive.

Patti, sending hugs.

Laura, I think Rachel is correct in her assessment of your results and that the worst of not getting a clear yes is knowing that you still haven't got a clear no. What does your doctor think?

I am now up to 30 drops of Samento a day, I've also started taking a Manganese supplement since I was way below the normal range and I've learned that manganese deficiency can be related to diabetes and I see that my insulin levels were on the low side. It seems to me that there are many factors contibuting to my ill health and that addressing the nutritional aspects are critical.

[CarlaB]

Yes, the typed out instructions from Nutramedix said 1/4 drop if you're sensitive ... the bottle doesn't say that. To do a quarter drop, you put a whole drop in the water, let it sit for a minute, then divide the water into four doses ... don't try to get 1/4 drop from the dropper!

I've been taking two drops per day for three days now.

[rinne]

Laura, I take it back, 30 is a borrelia specific band, 30 says elephant.

Link:

Open Original Shared Link

“Charles Ray Jones, M.D.

Madison Towers

111 Park St., Suite F

New Haven, CT 06511

Tel. 203-772-1123

[happygirl]

x

[CarlaB]

Sounds like your appt. went really well. It looks like you may have someone who will find answers for you! I've been napping, too .... just woke up and it was 5:39 ... Adam walked in about the same time, now the problem is dinner!! He seems to be taking responsibility for it, so I think I'll just stay in bed! It'll be a long few days, so I bet I can use the rest ... Dad comes in tomorrow.

[AndreaB]

Laura,

Yea!!!! You found a good doctor! I'm glad she/he is being so thorough.

11 vials.......I don't know how you guys handle all the blood draws. I think the most I've ever had is 4-6.

For those of you who don't go on D/S.....Robbin's last appointment was a disappointment. I'm not clear on whether she's been able to be tested for lyme or not. If anyone wants to go over and read her journal on Daily Strength pm me and I'll give you her user name over there.

[miamia]

has anyone ever heard of the lyme c6 peptide test

[Rachel--24]

Miamia,

I'm not familiar with that test. I just googled it and here's what I read...

I am responding on behalf of ILADS. The C6 peptide ELISA (see article below) was touted as a possible "gold standard" for the diagnosis of Lyme disease.What we have found is that the C6 has about the same sensitivity as all other ELISAs - about 50% in the chronic Lyme disease population. This is insufficient for a diagnostic screening test.

The MDL article claims a higher sensitivity (100%) in 52 "characterized specimens" from Lyme patients. These appear to be acutely infected patients. However "four false-positive C6 results were identified in patients that had clinically and microbiologically confirmed Lyme disease but were not detected by the CDC reference methods".

This statement casts doubt on the nature of the patient samples because these results should not be considered "false positive". It appears that the C6 assay works OK with strongly positive samples, but its utility as a screening test for chronic Lyme disease remains unproven.

A danger with this test is that physicians (and insurance companies) will start to deny the clinical diagnosis of Lyme disease if the C6 test is negative, with disastrous results for patients.

One interesting aspect of this study was the poor results obtained with commercial Western blots. The results were all over the place, and the variability shows why "two tier" testing does not work with the current patented Western blots.

The IGeneX Western blot remains the best diagnostic screening test for Lyme disease.

[Rachel--24]

Not sure if I posted this before....

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

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.