Omg...i Might Be On To Something

[miamia]

rinne-

these are my results

These are my results- there are no definite positives

IgM Western Blot /my numbers for the IgG:

18 kDa. neg /18 kDa +

22 kDa. neg /22 kDa neg.

**23-25 neg /**23-25 kDa IND

28 kDa. neg /28 kDa neg.

30 kDa. ++ /30 kDa neg.

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

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

37kDa Neg/Neg

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

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

45 kDa. neg /45 kDa +

58 kDa. +. /58 kDa ++

66 kDa. neg/66 kDa neg.

73 kDa. neg /73 kDa neg.

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

I'm confused about what the + 's mean - are those indicative of lyme or not?

Miamia

[jerseyangel]

Quick stop on my way to the shower--been cooking since yesterday--kids to be here at 2...

HAPPY THANKSGIVING EVERYONE--love ya all!

[AndreaB]

Julie.....am utterly charmed by your sleepy post. and THRILLED wtih the turkey idea!!! Yes, this is what I will do! You're my fourth suggestion and YOURS is the one I am taking!!

Yep, I copied over Julies famous ingredients too.

This is unprecedented. I have made cranberry sauce, stuffing (um, it's really mushy with EnerG brown rice tapioca bread but good flavor), am making chicken broth with the chicken remains, and some weird Indian corn/pumpkin pudding.

Blah!!!!! I am sweating from all this cooking. This never happens here, all this cooking, the dogs were staring at me, transfixed and confused.

Sounds real good to me. You've outdone yourself!

Andrea, safe travels tomorrow! Gosh, what are you going to do without us for all these days, and we without you?????

Thanks. I don't know what I'm going to do without you guys for 5 days. I won't know what to do with myself.

did you guys read this, on another thread? does anyone know anything about this?

i had a long discussion with the woman over the study about genes and testing. they do not feel that dr. fine's tests are accurate since they have never been reproduced by a third party. she said that they cannot accept anyone into the study that has been diagnosed by enterolab. she said that besides DQ2 and DQ8, they feel that there is a third gene involved with celiac which would probably account for biopsy-proven celiacs with out the 2 main genes. she said they have about 8 people involved in the study that fall into that category. they don't recognize gluten intolerant genes----does anyone know how dr. fine has come to the conclusion that so many genes are gluten intolerant genes----especially since no one else in the world recognizes these? also, i only questioned the validity of fecal testing, and she knew exactly what i was referring to---she was the first to mention dr. fine.

Haven't seen it......will have to go search for it.

I feel like part of Hoffman's doubt comes from the fact that he "feels" like I am healthy, I have another friend who is an Infectious Disease doctor, she was over for tea the other night and I know she doesn't "feel" like I am ill.

Who are these infectious disease doctors anyway?

Me too, I've mostly been here lately. I find it frustrating to see new people, with my symptoms, just hear their suspicions of Celiac confirmed when I am thinking this just doesn't sound right. It does not make sense to me that if you are a Celiac and you quit consuming gluten that you would not get well, it seems to me that your body would be happy with you but instead whatever is going wrong is like a trigger has been turned on that can't be turned off and then it is corn and then soy and then....I think that one of the underlying problems for many people is Lyme. Oh and my mother knows two women who were Celiac and are fine off gluten.

Since you guys have been diagnosed with lyme I've been more alert to other people's symptoms not being resolved on the gluten free diet.

I am so grateful I to have Rachelville to come to and laugh, and many days the theme to Cheers describes the feeling perfectly. I can't remember and I will not go back who posted the lyrics but yes, just that, thank you.

That was Patti.

Happy Thanksgiving everyone!!

Ditto what she said.

Donna-

I know the mood swings for me have been mostly down lately. But still within the down there seems to be a lot of room- theres sad and then theres angry, frustrated, and just completly spent and exhausted- I think I am becoming bi polar.

I hope you enjoy your applegate farms tuurkey and cranberry preserves. I am living on th eedge today I wasen't going to but last night I was with my mother helping her sook and I decided I wanted to cook too- So I am having grilled salmon which is safe for me (well relativly) a mix of wild and basmati rice, baked sweetpotatoes and apples and spinach. The only thing I ma nervous about really is the sweet potatoes but we will see I am just gonna have my fingers crossed

Miamia

Your meal sounds good to Mia.

This article, actually two, is long but well worth reading to try and understand the Western Blot test for Lyme.

Open Original Shared Link

Miamia, I thought of you when I read this and now I can't remember what page your results are on. I had an email this morning from my friend with Lyme and she says that she is positive I am positive for Lyme. I believe her because I know myself what is true for me and I know that I have Lyme. I know it is not my only problem but it is underneath my not getting well, in the past my body has always rebounded from illness or accidents but since the rash it has not.

Thanks for the link Rhonda. I bookmarked the site and copied over what you posted.

I can repost everyone's results if you'd like. I see Mia already posted hers for you.

I agree, this is a step towards better health for you. I must say I'm concerned that you may have to try and treat this on your own. Doctors!

[Rachel--24]

rinne-

these are my results

These are my results- there are no definite positives

IgM Western Blot /my numbers for the IgG:

18 kDa. neg /18 kDa +

22 kDa. neg /22 kDa neg.

**23-25 neg /**23-25 kDa IND

28 kDa. neg /28 kDa neg.

30 kDa. ++ /30 kDa neg.

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

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

37kDa Neg/Neg

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

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

45 kDa. neg /45 kDa +

58 kDa. +. /58 kDa ++

66 kDa. neg/66 kDa neg.

73 kDa. neg /73 kDa neg.

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

I'm confused about what the + 's mean - are those indicative of lyme or not?

Miamia

Miamia...YES....there ARE definate positives on your test....LOTS of them. All of those pluses (+'s)....they mean positive. The more pluses you have....the more positive it is.

Each one of the bands represents your own antibodies that your immune system is creating to fight off something. The more pluses you see....the more clear it is that your immune system is fighting that particular part of the Lyme bacteria.

Look at band 41...you have 2 pluses on one test and 3 pluses on the other test for that particular band. Band 41 is the "tail" of the bacteria....the part that makes it able to swim. What your test is showing is that your immune system is "attacking" the tail part of the bacteria. 3 pluses means that it is very CLEAR that your immune system is attacking the tail of the bacteria.

Its the same with ALL of the bands that you see pluses next to. All of the bands represent a ceratin "part" of the Lyme bacteria. So what you see on your test is that your immune system is really fighting these "parts" of the bacteria.

Your immune system doesnt create antibodies for things that arent there...only for things that ARE there. Like with gluten....your immune system will only create antibodies to "attack" the gluten if you actually eat the gluten. As long as its not there...the immune system isnt reacting to it. All of those pluses on your test mean that your immune system is fighting something....and it looks like its fighting the Lyme bacteria.

The problem with a few of the bands.....like band 41....is that many *other* bacteria have a "tail" also. So its not *certain* that the tail that your immune system is fighting belongs to Lyme bacteria. It could be another type of bacteria.

BUT....you have pluses on other bands that are ONLY part of the lyme bacteria....it *cant* be another bacteria that is triggering an immune response for those....it can ONLY be Lyme. If you put the WHOLE test together it looks very much like your immune system is actively fighting off Lyme.

This explains it really good...its from Rinne's post.

Simply, if you are blindfolded and touch the side of an elephant, you may not be sure it is an elephant–perhaps this is a rhino? This is the 41 band. It is from the flagella, or huge stringy rod that projects from it. Very crudely, the flagellum looks a dash like a sperm tail on the Lyme organism and is most often positive. However, the 41 antibody is not specific to Lyme, since many organisms have flagella.

Now, what if you touch this same elephant on its tusks or on its long peanut-eating tubular nose? You know it is an elephant. Period. One touch and you are certain, because these parts are very unique to this huge animal. This is Dr. Jones' point. If you see an 18 antibody that has a positive, you have Lyme. You do not need to check any other bands, because the 18 antibody is highly specific to Lyme—just like a tusk on an elephant.

What Do the Number of Pluses Mean?

IGeneX gives levels of antibodies. One + means you have some antibody of that type, and +++ means you have a very large amount of antibody of that type. However, Lyme ruins immune system functioning and the number of positives usually goes up with treatment. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have +/- findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.

I highlighted what it said about band 18....it is a part of Lyme...nothing else.....and you have a positive result on band 18.

Does it make sense??

[Rachel--24]

I'm reposting this....it applies to the Indeterminates seen on mine, Rinnes and Mia's test results...

Lyme ruins immune system functioning and the number of positives usually goes up with treatment. People with no aggressive past Lyme treatment, should be lucky their body has made any antibodies at all, since Lyme is very good at both hiding from the immune system and hindering it.

Also, many people have +/- (IND's) findings on an antibody. This means the lab tech is seeing something, but is not ready to call it a clear positive. In my experience, many of these patients also show high Epstein Barr labs, which means this common infection is not in check and the immune system is very weak. And after we treat the patient, the +/- usually becomes a clear + or even a ++--which means you now have new and clear antibodies against this part of the Lyme bug.

Rinne...I really like this explanation you found....one of the best I've seen. Thanks.

I was tested for Epstein Barr too....so I wonder what that test will show.

On Tues. I asked the BioSET lady about co-infections. If I end up having them does it mean I have Lyme....or can I have co-infections and *not* have Lyme Disease?? She told me that they are very commonly seen *together*....in her experience she has never seen someone have co-infections without having Lyme. She said it's possible.....but not likely.

I asked her if its really difficult to get a positive test for Lyme Disease. She said yes....its very difficult because many times the immune system is not actively fighting the Lyme. She said that Lyme does "funny" things to the immune system...and it hides from it.

A person can have Lyme Disease but yet their immune system is not actively fighting it.....or its not fighting it very strongly.....producing very little antibodies. No antibodies means a negative test. Not enough antibodies for specific parts of the bacteria means an unclear test result...or equivocal.

She's saying what we already know....a positive test result for Lyme (if you have it) depends on the state of the immune system.

Andrea...have a safe and enjoyable trip. I'll be thinking about you guys.

[rinne]

rinne-

these are my results

These are my results- there are no definite positives

IgM Western Blot /my numbers for the IgG:

18 kDa. neg /18 kDa +

22 kDa. neg /22 kDa neg.

**23-25 neg /**23-25 kDa IND

28 kDa. neg /28 kDa neg.

30 kDa. ++ /30 kDa neg.

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

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

37kDa Neg/Neg

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

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

45 kDa. neg /45 kDa +

58 kDa. +. /58 kDa ++

66 kDa. neg/66 kDa neg.

73 kDa. neg /73 kDa neg.

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

I'm confused about what the + 's mean - are those indicative of lyme or not?

Miamia

Miamia, what Rachel said and said so well.

I think the description of the bands and the elephant is brilliant, sadly though it makes it very clear that your doctor, like mine, does not know how to read this test.

There is interesting information in that article about Epstein Barr often being the bacteria that the Lyme is hiding behind and that when it is treated the Lyme is unmasked.

Patti, thanks for the Cheers theme.

[Rachel--24]

There is interesting information in that article about Epstein Barr often being the bacteria that the Lyme is hiding behind and that when it is treated the Lyme is unmasked.

As far as I know I never had Epstein Barr....no past testing has detected it and my BioSET test found NO viruses whatsoever....just plenty of Lyme bugs.

I think Laura had Epstein Barr though... I think it was the start of her illness.

Yeah...I love the way its described....the whole elephant thing...it makes it easier to explain.

[AndreaB]

She's saying what we already know....a positive test result for Lyme (if you have it) depends on the state of the immune system.

Andrea...have a safe and enjoyable trip. I'll be thinking about you guys.

Sounds like you got some good answers.

Thanks Rachel. Talk to you tomorrow.

I think Laura had Epstein Barr though... I think it was the start of her illness.

Yeah...I love the way its described....the whole elephant thing...it makes it easier to explain.

Is Epstein Barr responsible for mono? Then that's what she had. Hmmmm, this is beginning to sound more like an elephant.

I like that analogy too btw.

[rinne]

Andrea, I am thinking you must be very organized. When do you leave?

[rinne]

Open Original Shared Link

Epstein-Barr virus, frequently referred to as EBV, is a member of the herpesvirus family and one of the most common human viruses. The virus occurs worldwide, and most people become infected with EBV sometime during their lives. In the United States, as many as 95% of adults between 35 and 40 years of age have been infected. Infants become susceptible to EBV as soon as maternal antibody protection (present at birth) disappears. Many children become infected with EBV, and these infections usually cause no symptoms or are indistinguishable from the other mild, brief illnesses of childhood. In the United States and in other developed countries, many persons are not infected with EBV in their childhood years. When infection with EBV occurs during adolescence or young adulthood, it causes infectious mononucleosis 35% to 50% of the time.

I had mono when I was seventeen. I know I brought this up recently.

[AndreaB]

Andrea, I am thinking you must be very organized. When do you leave?

My husband is too. We are pretty much packed and leave in a little over 2 hours (around 2 o'clock). We need to stop and by quart sized ziploc bags (stupid security ) and travel size toothpaste.

Open Original Shared Link

I had mono when I was seventeen. I know I brought this up recently.

Thanks Rhonda. I knew someone who had mono when she was 16-17. I wonder how she's doing.....this was just over 20 years ago.

[rinne]

Thanks for bookmarking that link Andrea, even as I posted it I thought, "now this would be a good link for Andrea to save". Glad to see you were way ahead of me.

I'll be thinking of you and your Dad.

[DingoGirl]

I find it frustrating to see new people, with my symptoms, just hear their suspicions of Celiac confirmed when I am thinking this just doesn't sound right. It does not make sense to me that if you are a Celiac and you quit consuming gluten that you would not get well, it seems to me that your body would be happy with you but instead whatever is going wrong is like a trigger has been turned on that can't be turned off and then it is corn and then soy and then....I think that one of the underlying problems for many people is Lyme. Oh and my mother knows two women who were Celiac and are fine off gluten.

Rinne, I got better INTESTINALLY and reversed vitamin defiency and severe anemia off gluten.....gained weight but, I still really struggle mentally at times, for weeks at a time, it seems. When I was "bipolar," I was what was called a rapid-cycling bipolar. I think this had so much to do wtih the level of breads and cookies and pop tarts and all the glutinous foods I was eating and moods reflected that. Now, I have noticed two major plummets since going gluten-free.....one was that horrible six-week thing during the summer, and I think I"m in one now. Having terrible thoughts and really down, has a bit to do with holidays though. But, when my mood gets SO dangerously low, and I think the thoughts I think, I just think to myself, what is the POINT of all of this??? and I don't feel like such a crusader for gluten-removal wtih people since I still fall so deep into the pit.....I feel like a fraude. So this is a rambling reply to your post but, yes, my intestines and bowel movements returned mostly to normal, but, I'm still a basket case at times.....what's the POINT?

Rachel-

I completly relate to this. Yesturday I had alittle break down becasue I wasen't feeling well I was talking to my mom and I rememembered 2 Thanksgivings ago my sister said oh you'll be better by thanksgiving now its 3 later and I am sicker!!! I've always been a holiday person- not for the gifts- I don't like shopping but I love a day dedicated to relaxing, eating, and being with family now it seems like every holiday is like a marker- "one more year passed and you were sick" It makes holidays really hard and really negative. I find it hard tro look at old pictures- ITs like a different person is in them- not me- but a me that lived in a past life. Its almost torterous. Ok now I am depressing myself I have to stop.

MIamia.....I can so relate to this, but in a different way. I mark my life by Nov. and December also.....another year, anotehr holiday, and I am still in some state of depression adn without my own family.....agh! Must stop, I am depressing myself also! Let's all pray that next Thanksgivign is just blessedly joyful and pain-free for all of us. I hope you have a great ady with your family.

Donna-

I know the mood swings for me have been mostly down lately. But still within the down there seems to be a lot of room- theres sad and then theres angry, frustrated, and just completly spent and exhausted- I think I am becoming bi polar.

I will encourage you to say, I DON"T think you're becoming bipolar. You're just long- and deeply frustrated over your health....who could blame you?

Okay, still gotta cook the turkey breast. It's a relaxing day, I did not go to Modesto (90 minutes away) to see those cousins, w/ my mom and stepfather, and I know I"ll regret it....I was just too tired and it seemed like SO much effort.....so it's relaxing instead, two miles away to my brother's and the dingos get to go wtih me. It is unimaginably beautiful here, crisp, clear, sunny day, NO FOG, this is God's gift to travelers as our VAlley Tule fog is fatal for travel......so God is smiling on holiday travelers today, I think. WE haven't had a day like this in weeks, all fog, every morning. Imagine this!

HAPPY THANKSGIVING TO ALL!!!!!!

[AndreaB]

Bye Guys! Love you all!

Hope your Thanksgiving Weekend is as good as can be.

See you next week (unless I sneak on from my Dad's ).

[Rachel--24]

Found some more specifics about the bands. Rinne..I cant find anything to say that 58 is specific for Lyme....same with 66. I have both of them. I put my positives and IND's in red.

9 cross-reactive for Borrellia

12 specific for Bb

18 unknown

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and

one California strain

31 outer surface protein A (OspA), specific for Bb

34 outer surface protein B (OspB); specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

45 cross-reactive for all Borellia (sometimes people with Lyme who have

this band positive also have the co-infection Ehrlichiosis)

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients

Here is more info..

There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

CDC Western Blot IgM surveillance criteria includes only two burgdorferi genus species specific antibodies for IgM 23 and 39 and excludes the other seven Borrelia burgdorferi antibodies.

CDC Western Blot IgG surveillance criteria includes 18, 23, 30, 37, 39 and 93 and excludes bands 31, 34 and 83.

It does not make sense to exclude any Borrelia burgdorferi genus species-specific antibodies in a Lyme Western Blot, and to include only two of these antibodies in IgM because all the antibodies in IgG were once IgM.

IgM converts to IgG in about two months unless there is a persisting infection driving a persisting IgM reaction. This is the case with any infection including a Borrelia burgdorferi induced Lyme disease.

The CDC wrongfully includes five non-specific cross-reacting antibodies in its Western Blot surveillance criteria: 28, 41, 45, 58 and 66. This leads to the possibility of false positive Lyme Western Blots. There can be no false positives if only Borrelia burgdorferi genus species-specific antibodies are considered. One can have a CDC surveillance positive IgG Lyme Western Blot with the five non-specific antibodies without having any Borrelia burgdorferi genus species specific antibodies.

Sooo...it looks like (from what I just read) my most *significant* bands are 30, 34, and 39. Especially 34 and 39....had they been completely positive and not IND's.

I dont think they know much about 58 and 66 is not specific for Lyme....could be any bacteria with that band.

Interesting about band 30 being from a California strain....and I'm in Ca. Hmmmmm.

[dlp252]

Sorry I missed you Andrea...will be thinking of and praying for you, even if you don't know it, lol!

I'm finally home from my mom's house...it was exhauting, lol. Still my cousin said I look 100 times better than I did the last time she saw me (just a few weeks ago!)...must have been the pink sweater I was wearing, lol. Finally I just couldn't keep my eyes open any longer and just came home. Mom and auntie made the whole dinner so I could have most of it. We had a roast, veggies and baked potatoes, all with no seasonings (just salt), so that I could eat it all. I took one of my HN nutrition bars for desert with some almond butter...and my Applegate turkey and cranberry was my mid morning snack, lol. All in all a good day. I was slightly down about the wonderful pumpkin cheese pie my cousin made which I couldn't eat, but I got over it quickly...they brought their two dogs, so I had a love fest with them, lol.

[Rachel--24]

Ok...here are Mia's positives and IND's (in red).

9 cross-reactive for Borrellia

12 specific for Bb

18 unknown

20 cross-reactive for Borrellia

21 unknown

22 specific for Bb, probably really the 23/25 band

23-25 outer surface protein C (OspC), specific for Bb

28 unknown

30 unknown; probably an outer surface protein; common in European and

one California strain

31 outer surface protein A (OspA), specific for Bb

34 outer surface protein B (OspB); specific for Bb

35 specific for Bb

37 specific for Bb

38 cross-reactive for Bb

39 is a major protein of Bb flagellin; specific for Bb

41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia

45 cross-reactive for all Borellia (sometimes people with Lyme who have

this band positive also have the co-infection Ehrlichiosis)

50 cross-reactive for all Borrellia

55 cross-reactive for all Borrellia

57 cross-reactive for all Borrellia

58 unknown but may be a heat-shock Bb protein

60 cross reactive for all Borrellia

66 cross-reactive for all Borrelia, common in all bacteria

83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane

93 unknown, probably the same protein in band 83, just migrates differently in some patients

I think this clearly shows that miamia has many antibodies present which are specific *only* for Lyme.

There are nine known [Lyme] Borrelia burgdorferi Genus species specific KDA Western Blot antibodies (bands): 18, 23, 31, 34, 37, 39, 83 and 93.Only one of these Borrelia burgdorferi genus specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme Disease.

Rinne...I'm not sure about 58...there seems to be conficting info. about it.

It could be specific but I'm not sure that they know for sure....because of the conflicting info.

I wanna find out more about 58.

More band info...

WESTERN BLOT IN LYME

• Positive blot contains bands specific for

Lyme

• Specific: 18, 21-24, 31, 34, 37, 39, 83 & 93• Spirochetes in general: 41

• Nonspecific: All others!

• The more specific bands that are present,

the more sure the diagnosis

[miamia]

Rachel-

MY God- thank you!!! I can't believe the research you did and that you applied it to my results for me. That was really great.

ITs making me even more impatient to just get all this stuff done- the testing I hate that I have to wait til monday.

besides the bioset are there any other steps your taking with the lyme right now?

Miamia

[Rachel--24]

besides the bioset are there any other steps your taking with the lyme right now?

No...I'm not doing anything for the Lyme right now. I'm waiting for test results still. My Dr. is looking for co-infections...I'll found out more on Dec. 4th.

I'm not counting on a whole lot with my co-infection test. I was just reading that co-infections are just as hard to diagnose as the Lyme is. Shhheeesh.....why cant anything about this illness/diagnosis be easy??

I hope everyones Thanksgiving went well.

So far I have not been sad at all....I actually had a good day.

Well...I guess I'm sad that Whole Foods is closed and I cant get any food. I want some beef but ate it all yesterday.

[miamia]

No...I'm not doing anything for the Lyme right now. I'm waiting for test results still. My Dr. is looking for co-infections...I'll found out more on Dec. 4th.

I'm not counting on a whole lot with my co-infection test. I was just reading that co-infections are just as hard to diagnose as the Lyme is. Shhheeesh.....why cant anything about this illness/diagnosis be easy??

Rachel-

Easy........I don't even know if that word is part of my vocabulary anymore.Dec. 4th- that seems to far away!! Ok my doctor told me 2 intersting lyme realted stories- one of a women who like me had struggled to figure out what was wrong for ages- similar sympotoms- not exactly the same but siimlar test results and was diagnosed with lyme though finally and got better.

and one of a women who had seen every specialist- didn't have my symptoms but did have the crazy sensitivities- and she had inconclusive results for lyme and then was tested for coinfections and found out she had this really rare one (can't remember the name) But it was something no doctor would ever think t look for. So the coinfection thing could be an interesting road . Thats why hes giving me the Thrombotic marker panel test.

It is all so confusing to me though. But at least those stories are hopeful and my doctor has had some experience with lyme. I told my dad tonight when he was taking me home if I find out I had lyme and had a real diagnosis that would be enough for me- I woulden't want any gifts- I would have e\verything I needed!!

Miamia

[Rachel--24]

We had a roast, veggies and baked potatoes, all with no seasonings (just salt), so that I could eat it all. I took one of my HN nutrition bars for desert with some almond butter...and my Applegate turkey and cranberry was my mid morning snack, lol. All in all a good day.

Donna....everything sounds so yummy.

I'd be down about the pumpkin cheese pie too. My favorite deserts are cheesecake and pumpkin pie....I've never had them *together* in one pie though.....OMG...it sounds GOOD!!

[miamia]

Sorry I missed you Andrea...will be thinking of and praying for you, even if you don't know it, lol!

I'm finally home from my mom's house...it was exhauting, lol. Still my cousin said I look 100 times better than I did the last time she saw me (just a few weeks ago!)...must have been the pink sweater I was wearing, lol. Finally I just couldn't keep my eyes open any longer and just came home. Mom and auntie made the whole dinner so I could have most of it. We had a roast, veggies and baked potatoes, all with no seasonings (just salt), so that I could eat it all. I took one of my HN nutrition bars for desert with some almond butter...and my Applegate turkey and cranberry was my mid morning snack, lol. All in all a good day. I was slightly down about the wonderful pumpkin cheese pie my cousin made which I couldn't eat, but I got over it quickly...they brought their two dogs, so I had a love fest with them, lol.

Donna-

so glad you had a good thanksgiving!!! Mine started out really badly- I ahd a bit of a breakdown but I recovered- I can never stay sad when I am sround my neice and nephew- Ny meal tasted really good, unfortunatly I wasen't feeling well but the good news is it didn't make me any sicker- and I had all this unusual (for me unusual) things

The only things that made me sad I coulden't eat where these homemade biscuits that were steaming hot when my mom served them and my moms pecan pie- which looked like it should have been on the cover of a marthat stewart magizine- and I know from the past tastes as good as it looks

Miamia

[Rachel--24]

I told my dad tonight when he was taking me home if I find out I had lyme and had a real diagnosis that would be enough for me- I woulden't want any gifts- I would have e\verything I needed!!

You sound so much like me...I dont want gifts either...I just want to know whats wrong so that I can get on the road to recovery.

One day we will look back at our old pictures and we wont see a "stranger" anymore...we'll be able to "live" again and make new memories and have new pictures. We'll be even better than our "old" selves because we've been through this and we'll appreciate life so much more.

Oh...I know for sure that I will also appreciate FOOD like never before.

I think co-infections are a really important factor in getting better. From what I've read you can pretty much EXPECT to have a co-infection if you have chronic Lyme Disease.

I think alot of people dont get better with their treatments because of this....because they arent treating a co-infection. The co-infections can cause the same symptoms as Lyme.

Thats cool that your Dr. told you some stories with happy endings...I love when the BioSET lady tells me stuff like that.

My Dr. is very serious....he doesnt tell me any stories.

The only things that made me sad I coulden't eat where these homemade biscuits that were steaming hot

Torture!!

I am soooo crazy about bread. I cant believe I havent had any in over a year and a half!

I used to just go to the grocery store and get a warm loaf of bread and then just eat the *entire* loaf (with butter of course).

[happygirl]

x

[rinne]

Miamia, I am wondering why your doctor did not order these tests for you when he first saw the results? Was that in May? That would be about six months. Is he ordering these tests because you brought this up? If that is what has happened, why is it that those results sat there doing nothing until Rachel and I started posting our results and YOU investigated. I'm sorry, I feel badly saying these things, I like Hoffman and I understand how difficult it is when we like someone and they seem to want to take care of us but if this doctor has had these results for you for six months and has done nothing with them then he is an IDIOT. He may be a kind idiot but in my opinion which not be worth so much he does not have the knowledge and experience to help you.

Rinne, I got better INTESTINALLY and reversed vitamin defiency and severe anemia off gluten.....gained weight but, I still really struggle mentally at times, for weeks at a time, it seems. When I was "bipolar," I was what was called a rapid-cycling bipolar. I think this had so much to do wtih the level of breads and cookies and pop tarts and all the glutinous foods I was eating and moods reflected that. Now, I have noticed two major plummets since going gluten-free.....one was that horrible six-week thing during the summer, and I think I"m in one now. Having terrible thoughts and really down, has a bit to do with holidays though. But, when my mood gets SO dangerously low, and I think the thoughts I think, I just think to myself, what is the POINT of all of this??? and I don't feel like such a crusader for gluten-removal wtih people since I still fall so deep into the pit.....I feel like a fraude. So this is a rambling reply to your post but, yes, my intestines and bowel movements returned mostly to normal, but, I'm still a basket case at times.....what's the POINT?

Susan, maybe different parts of us heal differently and some sooner than later. I know I used to have very dark times with little will or hope of ever changing but eventually some spark inside me would reignite and I would find my way up. I know that is because I have a capacity for joy and I know that you do too. Does your art take you there?

Rachel, I find this very interesting too. I know I read something about 58, I may have even posted it back there somewhere but I can't remember. Both 41 and 58 are positive on mine so that means there are antibodies to something but what if not the Lyme. EBV? Then the following is about the 31 and 34 bands which are specific to late stage Lyme and both of those were IND for me.

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“A second criticism of the CDC Western blot criteria is that they fail to include the 31 and 34 kDa bands.

This does indeed seem like an odd decision, since antibodies with these molecular weights correspond to the OspA and OspB proteins of B. burgdorferi, which are considered to be among the most species-specific proteins of the organism. So why didn't Dressler et al. include them?

Answer: These bands tend to appear late if at all in Lyme disease patients, and did not show up with great frequency in the patients that the Dressler et al. group studied (though they did show up sometimes). As a result, they weren't deemed to have much diagnostic value and didn't find their way onto the CDC hot list.

However, while the absence of either of these bands from a patient's immunoblot result does not rule out Lyme disease, their presence is hardly meaningless.

Hi happy girl.