Omg...i Might Be On To Something

[DingoGirl]

It means put up a sign (go into business). Old signs were like shingles, especially considering old roofs were made out of wood. I mean back in the old, old days!

Thank you Carla.

[AndreaB]

Yeah...many, many people on the Lyme Boards got diagnosed with a "clearly" positive test from Igenix. Other people who've been sick for awhile have had to go on antibiotics and then retake the test to get the IND's to show up positive.

Is she on antibiotics for the candida? I suppose that's not enough or long enough if she is though.

[Rachel--24]

But now - what , five of you? - - have Lyme, and you all had such similar symptoms.......and longterm misery....

ME....I'm one of the 5.

Yup...longterm misery....that sums it up pretty good.

Oh...and all the other stuff you mentioned....weightloss, general malaise, multiple intolerances, basically feeling like crap despite my best efforts.

Is she on antibiotics for the candida? I suppose that's not enough or long enough if she is though.

Ummm...I certainly hope not. Antibiotics *causes* Candida...does not "cure" it.

I would really have to punch her Doctor if that were the case.

But noooo....I believe she is on Diflucin...an anti-fungal. Appropriate treatment for yeast.

[rinne]

Me either!

I believe this was in reference to my not showing restraint. Ladies, I assure you I have been.

So, The Dr's R have diagnosed this Why don't you two just hang up a shingle, and we'll come and see you? You guys DO seem to know more than the doctors.....that is really scary.

What is even more outrageous is that the tests are not that difficult to read if you want to understand them. Stephen Buhner in 'Healing Lyme' says that if in addition to symptoms, " a Western Blot assay with at minimum two bands, one being 41kd and the other one being Lyme specific, is an excellent indicator of infection. The IgG immunoblot seems to be slightly more accurate." We all have that. Also, I read something about 58kda being specific for Lyme and I think we all have that, I'll look for it.

I love hug and love fests!!

(((((((HUGS))))))

Me too, I am incredibly grateful to have found all of you.

[Kaycee]

I feel like I am lurking here, hope nobody minds, but I am struck by your determinations to find answers, and the support you all have for each other.

I hope you find your answers very soon, meanwhile I am learning a lot about lyme here, something I have never come across.

A couple of pages back there was mention of talc causing grief possibly to someone. Well whenever I take up using talc I have come out in a rash, and then when I have abandoned it the rash dissappears very quickly, until the next time I use it, then it happens again. What is talc made up of anyway?

Cathy

[Rachel--24]

I feel like I am lurking here, hope nobody minds, but I am struck by your determinations to find answers, and the support you all have for each other.

I hope you find your answers very soon, meanwhile I am learning a lot about lyme here, something I have never come across.

A couple of pages back there was mention of talc causing grief possibly to someone. Well whenever I take up using talc I have come out in a rash, and then when I have abandoned it the rash dissappears very quickly, until the next time I use it, then it happens again. What is talc made up of anyway?

Cathy

Hi Cathy

Sorry...I dont know anything about the talc. I dont recall who was talking about it.

Just wanted to say all lurkers are welcome to join in...we dont bite.

Yes...there has been alot of support on this thread....its been a really amazing journey and I've made some great friends along the way.

Glad you are learning something about Lyme....actually we're all still newbys as far as Lyme goes...so you're learning right along with us. Its still pretty new for me.

[AndreaB]

Ummm...I certainly hope not. Antibiotics *causes* Candida...does not "cure" it.

I would really have to punch her Doctor if that were the case.

But noooo....I believe she is on Diflucin...an anti-fungal. Appropriate treatment for yeast.

I know nothing about this....can you tell?

Hi Cathy!

[rinne]

I found this article very interesting, Open Original Shared Link

IMPORTANT TAKE-HOME POINTS

The Lyme disease controversy aside, primary care providers would do well to take note of the following points:

• The possibility of Lyme disease should not be ruled out in a geographic area that is believed to be nonendemic. Lyme disease has been found in every state. Always consider it in the appropriate differential diagnosis—bearing in mind that people, pets, and ticks all travel.

• Lyme disease requires a clinical diagnosis. Laboratory tests are not dependable, so it falls upon the clinician to take a thorough history and be aware of the protean manifestations of this illness.18

• Fewer than 50% of patients with Lyme disease recall having had a tick bite.

• The presence of an erythema migrans (“bull’seye”) rash is diagnostic, and no further work-up is required. However, fewer than 50% of patients have a rash, and when they do, the rash can present in many different forms.

• The ELISA test has only 65% sensitivity and is therefore unacceptable as the first step in a two-step screening process for Lyme disease. Screening should begin with the Western blot test.

• The CDC surveillance criteria were devised for epidemiologic purposes and were never intended to be used for the clinical diagnosis of Lyme disease. This is important to remember when the Western blot test result is negative according to CDC criteria but the patient’s history and symptoms suggest Lyme disease.

• Only a testing laboratory that reports all of the bands on the Western blot should be used. Remember that antibody reactivity may vary, depending on the antigens used in the blot and the strains to which the patient may have been exposed.

Judy, did you say that you have had the rash four times?

Miamia, please don't be hard on yourself for not reading your results sooner. Will you be seeing the doctor who ordered the test this week?

[AndreaB]

Judy, did you say that you have had the rash four times?

Yes, she did.

[Rachel--24]

Miamia, please don't be hard on yourself for not reading your results sooner. Will you be seeing the doctor who ordered the test this week?

I think she said she was gonna see him tomorrow.....that she's gonna bring her results and if he doesnt help her she will find someone who will.

[miamia]

ME....I'm one of the 5.

Yup...longterm misery....that sums it up pretty good.

Oh...and all the other stuff you mentioned....weightloss, general malaise, multiple intolerances, basically feeling like crap despite my best efforts.

Ummm...I certainly hope not. Antibiotics *causes* Candida...does not "cure" it.

I would really have to punch her Doctor if that were the case.

But noooo....I believe she is on Diflucin...an anti-fungal. Appropriate treatment for yeast.

Yes- I am on diflucan- and I am starting to feel it. I knew I would react to it, but I was suprised tthe first few days my major reaction was more brain fog than anything physical- but yesturday that change thats why I got off line so abbruptly I just coulden't sit up anymore- it was kind of mounting all day. I feel pretty crappy this morning I had weird dreams about lyme and candida and all sorts of pleasant thoughts!!! I have my doctors appt. tomorrow so I just want to get in there and talk to him asap , he is very respectful and I feel that if I want this lookied further into- which I obviosly do- he will do it. I know igenix offers further more accurate testing I don't know if thats the next step- but whatever it is I want to take it.

Miamia

[miamia]

On the igenix site it said this for the next test after the test I already got-

"The follow-up test for Lyme disease, if the above is negative, is the Lyme Dot Blot/PCR Panel - #875. This panel looks for pieces of the bacteria in urine as well as DNA of B. burgdorferi in the urine. Most physicians use an antibiotic challenge to make the test more sensitive. The antibiotic protocol, as well as the general instructions can be found in the urine testing kit available from the laboratory. You may also call IGeneX for a copy of the protocol.

The combination of all of the above tests provides higher than 90% sensitivity and better than 95% specificity. Remember that Lyme disease is a clinical diagnosis and testing can support your clinical presentation"

Maybe this is what I should ask for- but antibiotics make me so nervous- becasue of candida and leaky gut- UGH this is all so confusing!!!

[rinne]

Miamia, I will be talking to my doctor today about my results and will post what he has to say, clearly my tests are less positive than yours.

I'm glad you feel that your doctor is respectful, is this the same doctor that Rachel wants to punch?

[happygirl]

x

[miamia]

Miamia, I will be talking to my doctor today about my results and will post what he has to say, clearly my tests are less positive than yours.

I'm glad you feel that your doctor is respectful, is this the same doctor that Rachel wants to punch?

thanks Rinne-

It is the same doc. He is usually really effcient but not in this case apparently- I just have to get through today- I want to talk to him right now!!!!

[rinne]

It is a fest isn't it?

A friend sent me this, I think it was a post from one of the Lyme boards.

Subject: igenex testing

The CDC states their test criteria should not be used alone by doctors to make a Lyme diagnoses. Wrongfully, many doctors only use the CDC testing criteria. The diagnoses needs to be based on symptoms,

history or exposure to ticks, and testing. Fortunately, your doctor is using one of the best labs in Igenex. Igenex tests for all the Lyme bands (most labs do not). The bands are indicative of certain antibodies you have to various antigens from Lyme. Igenex reports how strong these bands show up using +'s. The more pluses the darker the band is. An indeterminate band means that there appears to be a faint band, but it is difficult to tell. The negative or positive result on the Igenex test only indicates if it meets the CDC conservative criteria or not. .

Band 41 is for the flagellum, or tail, of the bacteria. Many bacteria besides Lyme have a flagellum, so this

band alone without looking at symptoms and history should not be used for diagnosing Lyme. Band 41 shows up in 85% of those with Lyme, 42% in those that do not have Lyme, and 75% of those that have Syphilis. Other bands like 58 are more indicative of Lyme. It shows up in 36% of those

with Lyme, but only about 2% in those that do not have Lyme and 3% in those with Syphilis. Other bands like 23-25 only show up in those with Lyme. So certain bands cary a lot more weight than others. The

CDC criteria does not take this into account. How long you have had Lyme affects how strongly the bands show up. If you have just recently been bit by a Lyme carrying tick you may not show any bands,

since it takes your body time to create the antibodies. The Igm antibodies show up first and then the Igg. Also, if you have had Lyme for along time you may not have many or any bands as your immune

system is worn down.

[dlp252]

I love you donna

I love you right back! As much as I would NEVER want anyone to have Lyme, at least if you do you'd have a direction and a focus...still in disbelief over doctors these days.

[dlp252]

I feel like I am lurking here, hope nobody minds, but I am struck by your determinations to find answers, and the support you all have for each other.

I hope you find your answers very soon, meanwhile I am learning a lot about lyme here, something I have never come across.

A couple of pages back there was mention of talc causing grief possibly to someone. Well whenever I take up using talc I have come out in a rash, and then when I have abandoned it the rash dissappears very quickly, until the next time I use it, then it happens again. What is talc made up of anyway?

Cathy

I think it was Julie or Patti that mentioned the talc...it was in the discussion about Bare Minerals. Don't know the answer about talc.

Lurk all you'd like, and feel free to join in too...that's how many of us found our way here in the first place. I'm not as sick as most here, but feel like if I don't do something now I'll get there soon.

[miamia]

I love you right back! As much as I would NEVER want anyone to have Lyme, at least if you do you'd have a direction and a focus...still in disbelief over doctors these days.

I never thought i would get to the point in my life where if I discovered i have lyme diseases it would be something to celebrate- but here i am and if I find out i have it- there were be celebration- i also never thought celebration would not include good food and liquor- but i guess corn tortillas and home made seed and vegee spread will have to suffice.

[rinne]

I never thought i would get to the point in my life where if I discovered i have lyme diseases it would be something to celebrate- but here i am and if I find out i have it- there were be celebration- i also never thought celebration would not include good food and liquor- but i guess corn tortillas and home made seed and vegee spread will have to suffice.

Corn tortillas and home made seed and vegee spread sound good to me. I'm still on a mission to find large ones this week.

I know it is bizarre to say I am happy about Lyme disease because who wants to be ill with such a nasty disease but the reality of my life for too long has been pain; a diagnosis with treatment is a gateway out of this daily misery. It also confirms my reality, I am ill, which is something that was being denied by the idiot doctor I had seen.

I've started reading about coinfections and it seems key that they are identified and, it appears, treated before the Lyme is. Stephen Buhner says the problem with ABX is that it doesn't treat the coinfections which may be why those doing only ABX don't get better.

[Green12]

Oh Mia Mia, hugs! I just read the news about your test results Sorry I am so belated on this. How are you doing, are you hanging in there with all of this? Sorry to hear you are also reacting to the diflucan I hope you have a productive appt with your doctor today/tomorrow (not sure when exactly?) and that you get to the bottom of all of this. I will be thinking of you!

Hi Cathy, yes the talc was discussed as an ingredient in Bare Escentuals Bare Minerals make-up. I reacted to the brand and now Patti appears to be as well.

Patti, speaking of make-up, the foundation I have been using is Sante, I bought it at the health food store. It's ok, gets the job done, but I am looking for something else in the meantime.

Hi Donna

Adding my wub to the love fest

[happygirl]

x

[miamia]

Oh Mia Mia, hugs! I just read the news about your test results Sorry I am so belated on this. How are you doing, are you hanging in there with all of this? Sorry to hear you are also reacting to the diflucan I hope you have a productive appt with your doctor today/tomorrow (not sure when exactly?) and that you get to the bottom of all of this. I will be thinking of you!

Hi Cathy, yes the talc was discussed as an ingredient in Bare Escentuals Bare Minerals make-up. I reacted to the brand and now Patti appears to be as well.

Patti, speaking of make-up the foundation I have been using is Sante, I bought it at the health food store. It's ok, gets the job done, but I am looking for something else in the meantime.

Hi Donna

Adding my wub to the love fest

thanks julie-

i am not getting my hopes up yet - I don't know anything for sure so I ma just gonna wait and see what my doctor says tomorrow about what he feels the next step should be and see if I agree. Igenix reccomends this other test that is much more accurate and much more sensitive so I am kind of leaning towards that. I posted about it earlier.

Corn tortillas and home made seed and vegee spread sound good to me. I'm still on a mission to find large ones this week.

I know it is bizarre to say I am happy about Lyme disease because who wants to be ill with such a nasty disease but the reality of my life for too long has been pain; a diagnosis with treatment is a gateway out of this daily misery. It also confirms my reality, I am ill, which is something that was being denied by the idiot doctor I had seen.

I've started reading about coinfections and it seems key that they are identified and, it appears, treated before the Lyme is. Stephen Buhner says the problem with ABX is that it doesn't treat the coinfections which may be why those doing only ABX don't get better.

no- I have gotten to be very fond of my corn tortillas- they taste good and best of all usually don't leave me doubled over in pain- laways a plus!!! Right now I am happy they are so small becasue I have to watch my carbs becasue of the candida but still feel I need some so it gets me to stay good about that. But good luck on your search!!

Oh god I read alittle on coinfections- its so much to digest and the sad thing is we cannot rely on doctors at all and have to do it all on our own. What do we pay them so much money for again?

Miamia

[CarlaB]

Happy late morning everyone!

I went to a bread tasting party at my 8 year old's school today I brought Kinnikinnick white sandwich bread, and it was one of the least favorites. The lady who sat next to me said that she felt sorry for those who couldn't eat real bread (she didn't notice I didn't eat a bite of anything), I told her the longer you went without real bread, the better the gluten-free stuff tasted. It's funny that so much of our culture is based on bread. I actually can't even stand the smell anymore ... the bread aisle at the grocery smells worse than the laundry aisle to me.

Welcome Cathy! Most of us were lurkers before we joined in. I use Zia face powder -- no talc.

[jerseyangel]

Patti, speaking of make-up the foundation I have been using is Sante, I bought it at the health food store. It's ok, gets the job done, but I am looking for something else in the meantime.

I ordered Smashbox foundation, blush and mascara (all gluten free!). I'll let you know what I think