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The Lyme Disease Thread


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#856 Mtndog

 
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Posted 19 June 2009 - 02:10 AM

Hey thanks a lot, I take it that means you think it's possible.worth exploring?

Sorry it took me so long- yes, I think it can't hurt. Lyme is so weird because the symptoms are so varied. It can't hurt at the very least to rule it out. Here's an excellent list of symptoms: Burrascano's Checklist of Lyme Symptoms

Any input appreciated....

My daughter is almost 3, was diagnosed with Celiac disease just over a year ago. My pregnancy with her was awful, I was sick, exhausted, depressed and hated the entire 9 months. I also have a 5 year old and that pregnancy was totally fine.

Anyway, I have just been diagnosed with Lyme disease, had tons of symptoms, was hospitalized in Nov with cranial nerve inflammation, then had arthritis etc I've just finished 4 weeks antibiotics.

My questions/concerns???
Did I have Lyme while I was pregnant?
Could my 3 year old have it in addition to her Celiac disease? She still has huge stomach, irritability etc despite a good 'celiac panel' for her annual last month.
Should I get her tested but concerned that I hear the Lyme test is so unreliable?

Grateful for any response...
Claie


Hi- It's so scary to think your daughter might have it but if the mother has it while pregnant, it can pass on to the baby. How did you get diagnosed?

The only reliable (and no test is 100% reliable) test that Lyme docs use is Igenix Lyme panel. Who is treating you now? An Infectious disease doctor? I would see an LLMD (see the post above for the doctor referral database so you can find someone close to you. Talk to your docs about your daughter.

I'm sorry you've been through so much. It's a vicious disease.

My sister was just diagnosed last month. She doesn't know exactly how long she's had it either. She has one daughter that sounds like yours- the stomach troubles, irritability. BUT here's the kicker- she still has a sensitive stomach but she outgrew the irritability and the temper tantrums. It's hard with children to figure out what's going on.

Let me know what you find out.
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Gluten free since 2005

In the midst of winter, I found there was within me an invincible summer.
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#857 scotty

 
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Posted 15 July 2009 - 05:02 PM

yall beautiful. just wanted to say thanks Carla
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only when hope is fulfilled, hope is lost

*D-Digestive problems throughout youth and young adulthood unattended
*Self-convinced IBS '04 (began eating rice, breads, crackers...SFs to 'slow' the natural process)
*Winter '06 developed severely swelled legs with rashes, white tongue
*Self-diagnosed; Gluten Free Spring '07
*Celiac.com diagnosed Candida, Thrush Spring '07 (all that 3 years prior of nothing but rice)
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*Winter '08 pursuing more accurate testing for dianosis of the beast in which I am battling

#858 DreamWalker

 
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Posted 04 August 2009 - 06:29 PM

Holy.. mother of ... Lyme can cause upper right quadrant abdominal pain? Chronic Cholecystitis? And severe bouts of stabbing/shooting/burning pain through one's ribcage? I have some semblance of an explanation regarding those (albeit vague and futile-seeming at the moment).

Ehh. I know nothing of lyme outside of bits I've been reading in this thread. (And of course I punched in pain & lyme into google & found numerous hits - they seem too general in my case though.) It's ironic that I initially went to the doctor in July '08 for a tick bite. (This lead to biliary dyskinsia, celiac dx, osteopoenia, the list goes on something about thyroid, and where I am now.) I had found several crawling over me & the apartment as well earlier that year. Yet, I never found one biting me so I dismissed it. Then I developed a rash (rectangular) on my belly & had all the flu-crap symptoms. Yet, keep in mind this is all pre-celiac diagnosis so that wasn't all too abnormal for me. As are sore/stiff joints, blurry vision, having no idea where I am at times (gluten truly had an impact on that), etc. etc. Anyhow, that was in NC. My manager flipped when she saw it - said her brother had Lyme and to immediately get tested. Yet, I was in the process of moving to the other coast & that's when I found one biting the back of my head. (I didn't know it was a tick so I pulled it off. A few moments later, my head felt hot, warm & I was really dizzy but excused myself to the bathroom to throw up. I didn't know I had pulled out a tick until my dad proclaimed "What a present to bring us from NC!" Anyhow, my GP here didn't want to test as the back of my head had no rash. He said lyme was incredibly rare & exclusive to needle-head sized ticks. So, I swallowed it with question yet my labs came up funky and off we went to the gallbladder.

Ehh. Anyhow, when I was feeling like crap & going through the celiac-dx (which was never confirmed with a biopsy..... antibody (singular not plural my doc said there was only one... uhm.) blood test with a (+) gene test for DQ2 & DQ8. I wound up calling a family member to warn them about the genetics (they have a myriad of digestive issues) & inquired a bit into this "odd" syndrome I was diagnosed with when I was a toddler/very young. Apparently, when I was 5, I was sent to a lyme specialist (we lived in NY) who began treating me for Lyme Disease. Yet, I developed allergic reactions to all the antibiotics so they stopped at erythromycin. That's the summary of what I know. Um.... hm. Geez. I wonder....
Could it cause severe episodes of sharp, burning biliary-pain? (Despite the absence of a gallbladder?) I'm currently begging two GIs to believe me about the pain & vomit (post gallbladder removal) & finally landed my MRCP today.
I mean, what could they even do if I was positive? (Somehow I doubt this though....) With all the antibiotic allergies. . . Do I have to have a doctor's permission to order? It seems like one does. Hopefully, I'll have a GP soon. Hmm. I'll go fill out the questionnaire. Does this sound lyme-ish? Also, I have a long history beginning at age 11 of corticosteroids. I don't mean to diminish the hell any of you have been through but if this is the answer to this sharp, unrelenting biliary-pain......
Obviously, I'm not nearly as bad off as some of you. I read through a few stories ... I'm a bit speechless. Take care of yourselves!
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A hundred times every day I remind myself that my inner and outer life depend on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving.
- Albert Einstein

#859 Mtndog

 
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Posted 05 August 2009 - 07:50 AM

I'm not sure where you live, butit sounds like you need a Lyme doctor. Here is a link to a website where you can find one close to you: Lyme Disease Association Doctor Referral

Antibiotics are not the only way Lyme docs treat- they also use supplements, herbs. Maybe you're allergic to one family of antibiotics and not another?
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In the midst of winter, I found there was within me an invincible summer.
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#860 DreamWalker

 
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Posted 05 August 2009 - 02:53 PM

Thank you for the link. I looked it up & apparently there are three doctors within a reasonable radius. (I live in the east bay area of California.)
As for the antibiotic allergies, here's what I've been told. I would take a round of an antibiotic and up until two-ish weeks I'd be fine. (Although, for some I'd be find with the antibiotic until I developed an infection & needed it or one in that family again.) Then, I'd develop hives and/or serum sickness (This depended on the antibiotic... I really don't remember as I was so young. And I have a terrible memory as it is so I'd need someone to email me it to state which antibiotic caused both hives & serum sickness & which had either one or the other despite the fact I've had it drilled into my head so many times. I'm supposed to have a medi-bracelet.) However, I'd then become allergic to that antibiotic & any others in that family. (I was brought to mayo at some point? I believe they're the ones who diagnosed this & not the doctor in NY. We've lived in numerous states. Although, I recall Mayo a little as I was about 7 when we lived in MN. It had nothing to do with Lyme - just Penicillin).
The whole matter seemed so bizarre that when I was an adult I doubted its existence. (My mother is a bit.. unstable and can make up some rather dramatic stories. Yet, my dad confirmed the antibiotic-allergies when I asked a few months ago....err... We were re-united last summer so I couldn't ask before.)
I went to an immunologist (First one to get my asthma better controlled! Amazing doc.) 2-3 years ago to ask her about it (with the company of my mother who did all the talking and I only vaguely remember what my mom said) since doctors are very reluctant to give me an antibiotic (this was a problem when I had surgery at 16 for a bronchial cleft cyst which is normally an outpatient procedure but they kept me there for 3 days to watch for signs of infection) & I'd keep developing infections/flu's/upper respiratory infections that would take several weeks to fight off on my own & interfere with school. So, I wanted verification this was "real" and not something my mom had concocted. (I don't mean to sound cruel towards her - she has a bit of a delusion problem & won't go on medications. Although, that's a bit of a catch-22. I never would have remembered the whole thing if I went in on my own.) Uhm... Anyway, the allergist said that this syndrome could be something that I grew out of yet the third time I took an antibiotic (or one in the same family) instead of serum sickness/hives I'd most likely go into anaphylactic shock. Yet, she still wanted to test me (the only test is to simply take an antibiotic and see what happens). But I'd pretty much be sitting in a hospital bed for 30 minutes to an hour with a nurse & a doctor standing around with defibrillators. This sounded a bit wreck less to me if not altogether absurd & I decided to forgo the whole thing. Plus, another potential outcome would be developing hives/serum sickness & I was taking a heavy schedule at school.... Eh.... Yet, if I did develop an infection that had to be treated with antibiotics she said it wouldn't be a life-or-death matter I'd simply have to be hospitalized & desensitized. I wonder about the long-term outcomes of that though. We were talking about strep throat - little things. Geez, after writing all that you'd think this is something I'd address. I ack... normally have to be drug to the doctor except for recently - pain changes things. heh. <_<
The weirdest thing happened with the gluten free diet though. All the "gunk" that was in my lungs since I was little started disappearing. (I'm not on any asthma meds & haven't had a single attack this year. That's... .... astounding.) It took 3-4 months for me to cease taking asthma meds aside from Singulair. But I used to be on 4 daily meds + an inhaler with periods of prednisone so I'm pleasantly shocked.

Uhm. Anyhow, thank you again for the link - I'll give one of these doctors a call & see what comes of it.....
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A hundred times every day I remind myself that my inner and outer life depend on the labors of other men, living and dead, and that I must exert myself in order to give in the same measure as I have received and am still receiving.
- Albert Einstein

#861 Mtndog

 
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Posted 05 August 2009 - 03:48 PM

I'm glad that going gluten-free has helped you- it made a huge difference for me! Also, you can find a Lyme doc who uses other treatment besides antibiotics. I used to live/work in the East Bay (lived in Berkeley and worked in Orinda!)
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In the midst of winter, I found there was within me an invincible summer.
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#862 MissyJoy

 
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Posted 20 August 2010 - 05:11 AM

This thread is full of information, and I've been taking time to read through the multitude of pages - but they stop here....

Is anyone else out there still suffering with Celiac and Lyme?

I am on my 4th month of treatment for Lyme. My blood work was sent off to Igenx 2 days ago, but I just got some Labcorp results back last night that were "abnormal". My CD8 - CD57+ Lymphs was low - it's 57. I looked it up on the internet and it says that means I have only 2 possibilities.... I have Chronic Lyme or HIV. Well, I'm sure I don't have HIV, and so I guess I should be grateful that it isn't that! But Chronic Lyme is not much fun either.
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I am self-diagnosed - tired of going to the doctor's offices for them to tell me that they don't know what's wrong with me. I have been told the bowel problems are IBS for over 15 years - "Eat more fiber" is their only suggestion. June 2009, decided on my own to eat grain free and focus my diet on mainly whole foods.


#863 sugarsue

 
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Posted 25 September 2010 - 04:28 PM

This thread is full of information, and I've been taking time to read through the multitude of pages - but they stop here....

Is anyone else out there still suffering with Celiac and Lyme?

I am on my 4th month of treatment for Lyme. My blood work was sent off to Igenx 2 days ago, but I just got some Labcorp results back last night that were "abnormal". My CD8 - CD57+ Lymphs was low - it's 57. I looked it up on the internet and it says that means I have only 2 possibilities.... I have Chronic Lyme or HIV. Well, I'm sure I don't have HIV, and so I guess I should be grateful that it isn't that! But Chronic Lyme is not much fun either.

Hi, I found this forum tonight, we've been members of the celiac forum for a year or two now but I didn't know there was a lyme forum too. I am waiting for my daughter's Igenex test to come back and will go this week to get my test and my other daughter's test taken. We are all gluten intolerant and have multiple allergies and food sensitivities. My 9 yr old daughter has multiple problems and so do I and I am becoming convinced it is lyme. We will see a lyme specialist soon. I wonder how celiac and lyme fit together.
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Susan
LYME diagnosed 11/2010, allergic to wheat, Hashimoto's Thyroiditis, allergic to all grasses, most trees, dust
Mom to 9 year old dd, lyme, diagnosed 11/2011, highly gluten intolerant, epilepsy w/ generalized seizures, mitocondrial markers, malabsorption, recurring candida - Gluten-free Casein-free since 9/16/08. Diagnosed with P.A.N.D.A.S. 6/20/09, seizure free since going gluten-free!
and 10 yr old dd, Lyme diagnosed 11/2011, severe dust allergy, allergic to most trees/grasses/weeds. Positive gluten intolerance testing. Gluten Free since 12/09/08. Diagnosed with P.A.N.D.A.S. 6/20/09

#864 CarlaB

 
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Posted 29 September 2010 - 07:29 AM

Hi, someone told me that this thread had become active again. I'll update you on where I am now .....

I went through Lyme treatment that you can read about at my blog sixgoofykids.blogspot.com .... start back at Oct. 2008 for the full story.

Today I am completely well. At one point we thought I had celiac disease, ended up I was gluten intolerant, but it was triggered by Lyme and parasites. Once I got well, I can eat gluten again. If I had celiac disease, as many with Lyme do since Lyme can trigger celiac, then I would still need to be gluten free.

I'll be checking in on the forum periodically .....
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#865 purpleflowers

 
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Posted 29 September 2010 - 08:47 AM

Hi, someone told me that this thread had become active again. I'll update you on where I am now .....

I went through Lyme treatment that you can read about at my blog sixgoofykids.blogspot.com .... start back at Oct. 2008 for the full story.

Today I am completely well. At one point we thought I had celiac disease, ended up I was gluten intolerant, but it was triggered by Lyme and parasites. Once I got well, I can eat gluten again. If I had celiac disease, as many with Lyme do since Lyme can trigger celiac, then I would still need to be gluten free.

I'll be checking in on the forum periodically .....


I tried to send you a private message on here but it said you couldnt recieve messages so I had to post my message.(Sorry)

yesss it was me that inquired about you.
You have lots of good info and I haave lots of ???'s about Lyme.(well I wont scare you away.....its not lots but I do have some) I just started medicine for Lyme but have some concerns.I am scared to death as well because when yo feel like crap and dont really know what all is wring it can be overwhelming.

I know I read about 5 pages of your old thread from 07 or 08 (not sure) and I thought WOW she has been through alot and to hear what you just wrote that you are are COMPLETELY WELL has made me feel some what inspired through these black days of depression and loneliness.

I was even more excited when I found out that you fly in from Ohio to Ny to see your Dr and it sent bells off in my head.....(i thought omg does she have the same Dr that I have, Im in Ny and you referred to him as Dr B) (IT GAVE ME HOPE THAT I AM ON THE RIGHT TRACK ONCE AND FOR ALL WITH AN EXCELLENT DR THAT WILL KNOW WHAT TO DO TO GET ME BETTER) I then read on another page yo wrote something about Dr H and I became teribly disappointed again when I heard that ( because it cant possibly be my DR because ther is no Dr H in his practice.
i know we arent suppose to talk about our Dr's on here but I dont know how else to do it.I guess I can be vague and hint that he is in Rhinebeck, NY.
OH how I hope you tell me he was either your Dr or yo know he is good?
I am so scared and I have been unwell for most of my life. I am now going to be 33 in NOV. I prayed I would get help and it never came all these years but have now someway somehow been led to this office.
I do not work on top of it all. My husbacd is teh only one and we have 2 kids. I was recieving unemployment but that has run out and really I am not wll enough to go to work no matter how broke we are. I have to pay cash everytime I see him (he does not take Insurance.
This is all I will write for now because I am writinf alot but if its easier to communicate with you at sixgoofykids.blogspot.com then let me know.
I cant wait to talk more
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#866 CarlaB

 
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Posted 29 September 2010 - 10:50 AM

Here is fine .... I'll also see if I can figure out how to turn my PM's back on so I can tell you about my doctor. I did fly to NY and after 20 months I stopped treatment with him to try an alternative treatment in Germany. I went to Germany for 3 weeks, then continued the treatment and tons of detox for 9 more months, then I was totally well. I actually was better from Lyme when I left Germany, and felt 50% better, but still had babesia and bartonella. Those are now gone, too.

There are many good Lyme doctors (not enough though). I don't know about yours personally, but don't take that to mean anything as I don't know much about very many of them.

There is also a lot of good information on lyme net . org (no spaces)

Have you tried to get disability? I know many with Lyme get disability. If you have celiac disease, you might try to get it from that angle because Lyme is not highly recognized, as you are finding out.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#867 purpleflowers

 
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Posted 29 September 2010 - 12:46 PM

Here is fine .... I'll also see if I can figure out how to turn my PM's back on so I can tell you about my doctor. I did fly to NY and after 20 months I stopped treatment with him to try an alternative treatment in Germany. I went to Germany for 3 weeks, then continued the treatment and tons of detox for 9 more months, then I was totally well. I actually was better from Lyme when I left Germany, and felt 50% better, but still had babesia and bartonella. Those are now gone, too.

There are many good Lyme doctors (not enough though). I don't know about yours personally, but don't take that to mean anything as I don't know much about very many of them.

There is also a lot of good information on lyme net . org (no spaces)

Have you tried to get disability? I know many with Lyme get disability. If you have celiac disease, you might try to get it from that angle because Lyme is not highly recognized, as you are finding out.

I just finished reading some of your blog site. I just read that you went to germany for some treatment. Did your Dr in Ny get you better or did you get better from Germany? I probably could find the answer by re-reading your pages here on this forum and then the blog but it would be forever and my brain is pretty foggy these days and I wouldnt remember half of what I read.

As far as disability....I couldnt even imagine getting it.I mean as far as my testing for celiac goes I did not recieve that golden standard for that diagnosis.So it wont count. Enterolabs told me that I have a gluten sensitivity. Still to this day i dont know if I really do or not. Reasons being are: I tried it for a few weeks 2 different times and felt no difference.#2 I read the whole Body Ecology Diet book about 20 times (to have it memorized) and (this diet was hard!) and after doing the diet for about 3 months I gave up. Then within 6 months or so I got worse again.It wasnt til I was done with the BED and 6 months of returning worsening symptoms coming on that I then began to realize there was some connection between the BED and my body. I feel that the part that i think was healing something in there was mostly the coconut kefir ( well thats what i use to make) and combing the food correctly but mostly the kefir. I didnt have joint pains at that time but had lots of other bad feelings (1 being bad Depression and insomnia) the other being severe Digestive issues ( I didnt digest abything) The depression GOT way worse and the insomnia got better and the Digestive issues were almost completely gone! But here it is 2 years later and lots of other symptoms r worse.

I was also told by my Dr that I have adrenal fatigue and he has me on adrenal essence.I do not notice a thing.
Other than that, adrenal issue is the only real diagnosis I have been given for sure by a test.
My Dr ordered a test to help him determine if its Lyme and it was called CD57 and c4a
I also had the western blot test done that revealed a negative by the labs standards.
I dont have those in front of me right now but I have the others.

I will post what the cd57 and c4a said and maybe if you know anything about them maybe you can tell me.c4a level was 3665 and it says the limit should be between 0-2830
then the other says CD8-CD57+ Lymphs is 34L I guess L is for low it then says it should be between 60-360

Thank you or anyone else who can answer these questions so I can make sure that Im on the correct track.It makes no sense to me and googling the test didnt help me either
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#868 CarlaB

 
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Posted 29 September 2010 - 01:46 PM

If you can dig up your Western Blot, please post what positive bands you have.

Your CD57 is low. That usually is because of Lyme. I don't know a whole lot about it because my doctor didn't do it, but I know that the range given is even low, I believe they look for above 200. The complicating factor is that it doesn't take into account coinfections at all.

I got better to a certain extent with my LLMD. I had ups and downs. I had times I would be 90% functional, then I'd be 40% functional. That was an improvement from where I started, which was mostly bedridden, I'd say 15%. I decided to try something different and went to Germany and that is what got me better.

I also did things on my own, like parasite treatment and detoxification.

Of course your adrenals would be fatigued!!! Mine certainly were! Chronic infection does that to you. It's good to support your adrenals, but it's a bandaid, you have to fix the underlying cause, which is infection.

I have read the Body Ecology Diet. I incorporated some of the principles, but my gut was already mostly healed when I read it a couple months ago. I still have some minor gut issues, but mostly I'm doing well. That is the last thing to really heal, likely because it was the first thing to sustain damage.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06

#869 purpleflowers

 
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Posted 30 September 2010 - 05:38 PM

If you can dig up your Western Blot, please post what positive bands you have.

Your CD57 is low. That usually is because of Lyme. I don't know a whole lot about it because my doctor didn't do it, but I know that the range given is even low, I believe they look for above 200. The complicating factor is that it doesn't take into account coinfections at all.

I got better to a certain extent with my LLMD. I had ups and downs. I had times I would be 90% functional, then I'd be 40% functional. That was an improvement from where I started, which was mostly bedridden, I'd say 15%. I decided to try something different and went to Germany and that is what got me better.

I also did things on my own, like parasite treatment and detoxification.

Of course your adrenals would be fatigued!!! Mine certainly were! Chronic infection does that to you. It's good to support your adrenals, but it's a bandaid, you have to fix the underlying cause, which is infection.

I have read the Body Ecology Diet. I incorporated some of the principles, but my gut was already mostly healed when I read it a couple months ago. I still have some minor gut issues, but mostly I'm doing well. That is the last thing to really heal, likely because it was the first thing to sustain damage.


ok i found my results for the western blot test. It first gives this key thing on how to read it I guess

****PRESENCE OF ONLY ONE DOUBLE STARRED BAND OR INDETERMINATE DOUBLE STARRED BANDS IN A NEGATIVE REPORT MAY INDICATE CLINICAL SIGNIFICANCE

It says Band Intensity: NEGATIVE (-) No visible band present
INDETERMINATE: (IND)
BAND PRESENT WITH INTENSITY < WEAK (1+) POSITIVE CONTROL
POSITIVE (1+ to 4+)
BAND PRESENT AT AN INTENSITY >/= WEAK (1+) POSITIVE CONTROL

My results are as follows: ( I will only list the bands that have things near them

IGM RESULT

**23-25kda says INDETERMINATE
**31kda says -
**34kda says -
**39kda says INDETERMINATE
**41 kda says ++++
45 -
58 -
66 -
73-
**83-93 says -


PAGE 2 SAYS IGG RESULT
18 -
22 -
**23-25 = -
28 = -
30 = -
**31= -
**34= -
**39=INDETERMINATE
45 -
58 -
66 -
73 -
**83-93 = -

Thank You so much for helping me :)
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#870 CarlaB

 
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Posted 30 September 2010 - 06:20 PM

I can see why he ordered additional testing as that test is really indeterminate. My daughter had a test like that, so we did a trial run of abx and she responded to it, so that was confirmation of her diagnosis.

But you did have IND on important bands.
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gluten-free 12/05

diagnosed with Lyme Disease 12/06




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