Omg...i Might Be On To Something

[rinne]

I learned a sauna trick yesterday from my organic grocer, she goes to the same place for saunas, she puts castor oil on the parts of her that are hurting, sort of a lazy castor oil pack. Carla have you ever heard of doing this?

We are thinking of ordering one that has an aroma therapy component and celiac disease player. We just have to re-mortgage the house. I'm serious, we've spent the last three years whittling our debt down to almost nothing and now I just don't care about paying it off. I am beginning to understand that my health is more important than that. I'm fortunate that my sweetie has always been a sauna person and there is no arm twisting involved.

[AndreaB]

Aww, Thanks guys.

I still believe I'm learning all this for a reason.....just don't know which one yet.

Could be I'll be dealing with something like this in my family......could be someone I meet someday. Either way, I'll always be thankful for the friends, support and knowledge of this little community we've built.

My pastors wife called today to check up on how my Dad was doing. Her youngest son has epilepsy and I did mention that I had a book that listed conditions helped by a gluten free diet and that was one of them. Don't know that she'll do anything about it. They are lacto-ovo as are so many in our church. She herself, is a breast cancer survivor. Illnesses help us to understand what someone else goes through when we go through it ourselves, as you guys have found out. I'm trying to learn by osmosis if you will. My pastors wife thinks that Talitha's HSP was something that would start me in that direction as well, and now the food intolerances (although they are mild). Now with my Dad's cancer, that may be another dimension to my learning. She said when her husband went back to see his Dad years ago for the last time, it did something to him. For those of you who've lost parents maybe you know what she means. Unfortunately, I will probably know sooner rather than later.

Hmmmm.....I wonder if being a BioSET lady means I could treat myself!! That would be WAY cool......and WAY cheaper too!

I wonder if that would work. Definately way cheaper.

[DingoGirl]

I think I've been herxetic since I was born.

me too...

People, I have lyme.

I went to my bioscan lady today and I tested for it. I asked if that meant I had lyme, and she said well I'm not allowed to say that...but this would be a very strong indication, that YES, I have lyme.

Anyway, just thought Id share.

Hope everyone is having a great day

And BAM, she just calmly pops in and drops this on us,

JULIE OMG!!!!!

Again, I am both ecstatic and devastated for you, all at once....OMG! More and more of you....this is so crazy.....but this will lead to health, I think!

I am praying for you and everyone else to JUST GET WELL.

Sending hugs and love, gotta eat!

[rinne]

An update on the IDSA guidelines.

Open Original Shared Link

November 16, 2006 08:00 AM Eastern Time

Historic Move by CT Attorney General to Investigate IDSA Guidelines Process

Gives Hope to Thousands of Lyme Disease Patients

Statement from Pat Smith, President, Lyme Disease Association

HARTFORD, Conn.--(BUSINESS WIRE)--The national non-profit Lyme Disease Association (LDA), representing more Lyme disease patients than any organization in the United States, applauds Connecticut State Attorney General Richard Blumenthal for beginning an investigation into the Infectious Diseases Society of America (IDSA) Lyme disease guidelines development process. In an unprecedented move, the Attorney General’s office filed a Civil Investigative Demand (CID) to look into possible anti-trust violations by the IDSA in connection with exclusionary conduct and monopolization in the development of the Lyme guidelines.

Although unprecedented, the LDA feels this action is vitally necessary to protect the welfare of chronic Lyme patients nationwide whose treatments have been impacted by the stance taken by the IDSA. Their guidelines deny the existence of chronic infectious Lyme disease and list as “not recommended” most of the conventional medical treatments prescribed by physicians as well as alternative treatments often chosen by patients for any Lyme manifestation. Even some nutritional supplements should not be an option according to IDSA.

Clinical guidelines now drive the standard of care, and these IDSA guidelines have already been published on the CDC website. They are being used to deny treatment reimbursement and will have a continued chilling effect on the small numbers of treating physicians, since clinical discretion is not recommended in the guidelines.

[CarlaB]

Wow, I was gone a little while and lots to read. Sorry, brain is still on vacation ... never heard of the castor oil treatment. I remember reading somewhere not to put lotions on before the sauna, but castor oil would be purer ... I don't see how it would benefit (since we're trying to get stuff out, not in), but maybe it would -- I don't really know anything about castor oil.

We ate at Maggiano's tonight. The waitress was horrible ... ended up getting our meal for free ... very weird, the waitress was argumentative ... anyway, the manager took over and we chatted a bit. He said that they get about 6 gluten-free people in there per night!!! That's huge! No one goes in there and eats alone! We are going back next Saturday with a party of 10 ... I told him that and mentioned that it's always those of us who are gluten-free who pick the restaurant.

[Rachel--24]

And BAM, she just calmly pops in and drops this on us,

JULIE OMG!!!!!

I KNOW!!!!

I'm thinking the same thing....heres Julie....

Hi People...

Just thought I'd mention.....I have Lyme

Have a nice day

OK...so I shortened it a little.....BUT STILL....I seriously almost FELL out of my chair!!

I'm with you Susan......its totally CRAZY...spooky even.

Maybe we were all suppossed to meet here in Rachelville, figure this out....and GET WELL!! I always thought we could definately figure stuff out....I'm just actually shocked thats its really happening.

[AndreaB]

Let's give a cheer for perseverance, determination and the knowledge/learning that comes from bouncing things off of each other.

I'm so happy all you guys can start forward to treatment and better health.

[happygirl]

x

[rinne]

I have my IgeneX test results in front of me and I don't have a clue what they mean. They don't appear to resemble your results Rachel.

They are the Lyme IgG and IgM Western blot tests.

This jumps out at me:

Presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks.

I wonder if that is what Hoffman meant by atypical Lyme.

I have quite a few indeterminate bands, I am thinking this means that my body is barely fighting the Lyme but I honestly don't know. This would mean that I am very ill but it also makes a lot of sense to me because when I started taking the salt I felt like I had been "running on empty" for so long that I had no fight left in me. The salt being a natural antibiotic would have started to fight the Lyme and that would be why there is any indication of Lyme at all. I'll talk to Hoffman on Tuesday, now I wish it was sooner.

Carla, castor oil packs are used for detoxification. You soak cotton in castor oil, place it on the area of the body that is in pain and put a hot water bottle on top of that, leave it for an hour. You do have a good point about just wanting to sweat and needing the skin to breath to do that.

[Rachel--24]

Let's give a cheer for perseverance, determination and the knowledge/learning that comes from bouncing things off of each other.

Yeah....thats for sure! Noone can ever say that we arent one VERY determined bunch here. We dont give up....we've been here like almost 8 months now....and never once giving up!

Its weird to go back and read my first post and then be here now.....having an answer....I'm still overwhelmed by it all.

All of the recent developments have been very exciting to me. I'm not saying Lyme doesnt suck...cuz it does...but the whole process and the results we're now getting are really really exciting to me. I hope the trend of people getting answers continues....(almost) 4 in one month is GREAT. We've come a long way in 600 + pages.

[rinne]

Hi happy girl.

Rachel, cross posted again. LOL

[happygirl]

x

[Rachel--24]

Rinne

Here is the results of my IgM and IgG Western Blots. Its what I sent to you and Robbin when I first found them in the mail. This is actually the IgM results but the IgG were almost identical.

IgM Western Blot

18 kDa. neg

22 kDa. neg

**23-25 neg

28 kDa. neg

30 kDa. +

** 31 kDa neg

**34 kDa. IND

**39 kDa. IND

**41 kDa. ++

45 kDa. neg

58 kDa. neg.

66 kDa. +

73 kDa. neg

**83-93 kDa. neg

Overall the test is reported as being negative but this is what it says.

The IgM WB is considered negative if less than 2 starred bands are present. A positive suggests exposure to B. burgdorferi. By CDC/NYS criteria, IgM WB is reported positive if two of the following bands are present: 23-25, 39, 41kDa. The IgM is negative if less than two bands are present.

It says positives in bands 31 and/or 34 may be present after vaccination in uninfected persons.

*****Presence of only one double starred band or indeterminate double starred bands in a negative report may indicate clinical significance. Therefore, we recommend testing with another method and/or retest in 4-6 weeks.

If either of the 34 or 39 bands had been positive....it would have met CDC criteria. They were both indeterminate....weak positives. Not strong enough to meet CDC. This test was tecnically negative but in actuality those bands should be negative if there is no presence of Lyme....an indeterminate means *something* is showing up.

It was the IFA that came back positive. It was included with the Western Blot tests but the results of the IFA were not sent to me.....they were only sent to my Dr. Its possible your Dr. has these results as well. I think my Dr. had said that the IFA test was done complimentary...that Igenix just ran the test for free with the Western Blots.

I'm still not 100% certain of my diagnosis because of those IND bands....but the IFA was VERY positive and the BioSET was VERY positive. If I am positive for co-infections I guess it will seal the deal but if co-infections are negative I might want to retake the Western Blots.

I think my Dr. already has the green light to treat me for Lyme Disease because of the positive IFA.....if I start treatment I would wanna redo the Western Blots after a few months to see if the Indeterminates became positive. Thats usually when the results will come back poitive....after treatment has started and some of the antibodies have been freed up.

[Rachel--24]

Rinne....did your results look anthing like mine? Did you have IND's on the double starred bands??

The double starred bands are the ones that are *most* important.

I had sent my results to LymeToo.....shes really familiar with the bands and how to read the results. She said that based on my results I have Lyme Disease.....in her opinion. This was before I talked to my Doc and found out about the positive IFA. You can try to pm her your results and see what she says about them.

She had also sent me a really good link with info. about the Western Blots...what they mean...etc.

I think I lost the link though.

[AndreaB]

Rachel,

That looks positive enough for me.

Rhonda,

What are your numbers.

Laura,

Are you going to get tested for Lyme?

[rinne]

Rachel, can I get away with blaming my Lyme brain?

My results are similar and I am understanding them in the same way. So, although the test says negative the indeterminate bands show Lyme and once treated will probably show up as positives rather than indeterminate.

This seems to explain the difference between the IgG and IgM.

The IgM means an infection is current. The IgM antibodies are produced right away with an infection. There are many and they are much bigger than the IgGs (about 6 times bigger). IgGs mean there has been an infection in the past and suggest a chronic condition when positive.

[happygirl]

x

[AndreaB]

Laura,

I think it would be a good idea.

When do you see the natural medicine doctor?

[happygirl]

x

[rinne]

i have no idea what the heck is wrong with me....I think maybe I should start seeing a psychic or something :) haha

How about a bioset voodoo woman?

Okay, my numbers for the IgG:

18 kDa neg.

22 kDa neg.

**23-25 kDa neg.

28 kDa neg.

30 kDa neg.

**31 kDa IND.

**34 kDa IND.

**39 kDa IND.

**41 kDa pos.

45 kDa neg.

58 kDa pos.

66 kDa neg.

73 kDa neg.

**83-93 kDa neg.

[Rachel--24]

Rinne....the results are pretty similar to mine.

Lymetoo had said that the IND's are basically weak positives. It was all explained in the link she sent but I guess I deleted it.

I still say pm her your results. She probably knows how to read them better than the docs do. My 66 band was positive and she said that that particular band being positive pointed toward a definate Lyme infection.

To tell you the truth I've never looked into the bands and what significance they have....but she seemed to know all this stuff.

Maybe I will make this my project for tomorrow.....research the WB's and the bands.

[rinne]

Just Rachel away.

I just found this:

Most LLMD's consider a postive on band 39 alone enough for a confirmation of Lyme.

[AndreaB]

For those who want to see the numbers together for Rachel and Rhonda.

Rachel /Rhonda

IgM Western Blot /my numbers for the IgG:

18 kDa. neg /18 kDa neg.

22 kDa. neg /22 kDa neg.

**23-25 neg /**23-25 kDa neg.

28 kDa. neg /28 kDa neg.

30 kDa. + /30 kDa neg.

** 31 kDa neg /**31 kDa IND.

**34 kDa. IND /**34 kDa IND.

**39 kDa. IND /**39 kDa IND.

**41 kDa. ++ /**41 kDa pos.

45 kDa. neg /45 kDa neg.

58 kDa. neg. /58 kDa pos.

66 kDa. + /66 kDa neg.

73 kDa. neg /73 kDa neg.

**83-93 kDa. neg /**83-93 kDa neg.

And Rachels other bit of info for us.

The IgM WB is considered negative if less than 2 starred bands are present. A positive suggests exposure to B. burgdorferi. By CDC/NYS criteria, IgM WB is reported positive if two of the following bands are present: 23-25, 39, 41kDa. The IgM is negative if less than two bands are present.

It says positives in bands 31 and/or 34 may be present after vaccination in uninfected persons.

[rinne]

Thanks Andrea, that is really interesting and I am going to go back and look at it again. I appreciate you doing that, it is one of those tasks that just seems beyond my tiny little mind to even think about doing let alone accomplish.

[rinne]

Open Original Shared Link

If I understand this article, it is saying the Western Blot is a useful tool if it is read properly, the problem is that the CDC places unrealistic expectations on it and therefore nullifies its' usefulness unless you are .a LLMD.