Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Omg...i Might Be On To Something

Rachel--24

Recommended Posts

AndreaB Contributor
AndreaB
Posted
In any event, I see a new doctor on Wednesday, and will see what she thinks.

Hope you feel better Patti. Keep us posted on your doctor appointment if you will. :)

drive by :)

sorry to you ladies who are not doing well. add me to the list! still hating life....four times in 2 hours to be specific, all this morning.

i hope our weekend is better!

Hugs to you to Laura. Also hope your weekend is better.

Being in the sun gives Vitamin D...I just know I feel better when I'm getting some natural sunhine and fresh air.

I know I spend too much time indoors all the time. Summer allergies keep me in. Hopefully being gluten free will help with that next year. I also don't really like where we are. I was out at our old rental alot. Better area/yard and had a long driveway I could walk. This place is nothing but weeds and not much grass. Don't really like using chemicals.....

And she recommended to go to Pub Med for the lyme research they have published there, she said there is a lyme strain specific to Colorado found in squirrels and birds, and various other animals up and down the front range, :blink: nice.....

Glad you found someone to talk to Julie. That's interesting about the other critters that have a lyme strain. Sounds like lyme is becoming more and more prevalent (I know you guys have already quoted articles about that).

When I want to do outside work, I wake up early and go out at 7AM. I'm sure that the neighbors wonder what my lawnmower is doing--running at that hour :lol:

Yes, I would definately wonder.....unless it was going to be a super hot day. :P

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


  • Replies 33.4k
  • Created
  • Last Reply
jerseyangel Proficient
jerseyangel
Posted

Thanks Andrea--will do :D

Have you all gotten settled back in at home?

AndreaB Contributor
AndreaB
Posted
Have you all gotten settled back in at home?

Pretty much. Schedule is still off with bedtime etc after the kids being up way past their bedtime on Monday. Talitha is still trying to wrap her mind around a full day of school again. I just resorted to the timer.....we'll see if that works any better.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Well....I finally got around to contacting that guy from my area....the one from this site...

Open Original Shared Link

He was really nice and helpful. :)

I could tell he would be quite knowledgeable since he seems to be very involved. He has his own column in that Lyme newspaper I read....the one I got the 10 commandments from. He's also involved in that documentary thats still in the making..."Under Our Skin".

You can view all of the newspapers here.

Open Original Shared Link

This is a great newspaper...check out his article on co-infections (August 2006)

That story about the "Tough Grandma" I posted a few weeks ago came from the November issue.

Anyways not only does he see the same Bioset lady but we also have the same Dr.

Hey...Laura...didnt you say he was my twin?? :lol:

I asked if he'd seen my Dr. or has heard anything about him. He told me that yes...he sees him but not as his primary LLMD. He said he has many friends who do see him as their primary LLMD and that he is very capable and up to date on all the treatments etc.

One of the other Dr.'s in his office is full-time LLMD....so I'm sure my Dr. is very much "in the loop" with Lyme treatment.

I gave him my Western Blot results and asked him if he thought I should take the CD57 test. This is what he said about that.

Even a + or IND on 30, 34, 39 is pretty telling. I bet your CD57 is low.

Get that tested. Remember IND means NOT-NEGATIVE. If it were NEGATIVE,

there would be nothing showing up. Do the CD57 regardless of your

coinfection testing results.

I told him I would do the CD57 if my co-infections were negative but I think on Monday when I see the Dr. I'll request the test even if the co-infections come back with something.

He had all 3 co-infections but only Ehrlichia showed up on his first test...then 4 months later Babesia showed up and then 4 months after that Bartonella showed up. Sooooo....they can all be there but they're not likely to show up all at once.

This is what he said about my positive IFA results...

I have not heard of the IFA being false positive at that level. Have you inquired with Nick Harris at IgeneX? If that were true, 20% would be false positive based on the way you are understanding it and I don't think that is true. I think it means at 1:80, it is 80% specific but at 1:160, it is higher.

So...today I'm gonna try to get this question answered for me.

About the BioSet testing.....He really believes in the energetic testing results....he said if they show Lyme...then he believes it. He still goes to BioSet for treatments.

Diagnostically, it is amazing and it has helped me to figure out what was happening along the way.

He also sees the LLMD that I'm on the waiting list to see in March. She'll be here next week but shes all booked up. She's the one who is Dr. Klinghardt's partner. He told me that she is AMAZING.

I guess he will be assisting her for 3 days doing ART with other patients. I didnt know what ART was?? :unsure: Rinne...maybe you are familiar with this??

ART is autonomic response testing from Dr. Klinghardt - another energetic testing

technique.

Its great that he has this oppurtunity. It sound like he's gaining quite a bit of knowledge and I think he was only diagnosed in 2005. He's accomplished alot in a short time. I'm impressed with all he's done.

He said Tahoe is a cesspool for Lyme so he wouldnt be surprised if I got it there.

He sent me this map....I hadnt seen it before. It shows cases of Lyme and how many there are in CA area but the page is actually about the similarities geographically between MS and Lyme Disease.

There is a map of MS cases and a map of Lyme Disease cases and the 2 maps are almost identical. :o

Open Original Shared Link

This is what the article was saying..

Some of those who worked with Steiner in the United States as well as other researchers hypothesize that MS and Lyme might be either: 1) the same disease; or 2) different diseases caused by two different spirochetes carried by the same arthropod vector

Geostatistical and biochemical analyses reveal many similarities between MS and Lyme. Each is influenced by geography, and MS and Lyme overlap in this geographic distribution. The author began to examine the relationship between MS and Lyme after being struck by the similarity of the distribution apparent in generated distribution maps of both diseases.

He also told me of the best support group in the area...so I may go to a meeting at some point.

Has anyone ever been to a support group??

Do you have to sign up ahead of time or can you just go?

He didnt give me a phone number just the location and when they meet. Its the same info. my Dr. had given me. Does this mean I can just go anytime? :unsure:

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I just talked to the gal who heads the lyme support group in my area, she was great- very knowledgeable and a real fire cracker. She said people call her from all over to talk to her. Anyways, she referred me to some Drs here, websites, informational sources, etc.- a lot of the same things you guys have shared here.

Julie,

It sounds like you are getting alot of good info. I can relate to your feelings of not wanting to deal with new doctors but hopefully if you're getting good recommendations you will end up in good hands. :)

A year ago I was pretty much anti-Dr. after all of my experiences with that HEINOUS place known as Kaiser...with the most HEINOUS doctors ever to recieve liscences. :angry:

Ever since....my luck has been good....and the Dr.'s have been great. :)

AndreaB Contributor
AndreaB
Posted

Rachel,

Wow, you've learned a lot! I have this guys site bookmarked but haven't really looked at it yet. Very interesting about those maps....wish they were bigger.

As far as the group, I believe you can just drop in. Support groups are designed for whoever needs/wants support and the people who attend don't necessarily attend every meeting.

miamia Rookie
miamia
Posted
Can't be the weather for me, either. Just looking for something else to pin it on, I guess.

yup-

I know its not the weather but itwas an easy target for blame. I will say though their are only 2 things that help me when i feel really bad- a bath and the sun so being without the sun for the past little while definitly has not helped me at all. I need to be outsided and when its cold I am in alot because of how strongly it effects me I think the lack of fresh air makes all my symptoms worse

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Thanks Andrea. :)

I'll just pop in when I want then. :P

Heres some info. about the CD57 test. I think Miamia took this test already??

CD57 - We have all likely heard of people with HIV/AIDS getting their T-cell counts or CD4 cell counts checked on a regular basis. Current information suggests that there is a similar population of NK (natural killer) cells called CD57 cells that are known only to be suppressed in the presence of Lyme disease. Generally guidelines are that a score of < 20 indicates advanced or highly active Lyme disease. Scores of 20-60 are indicative of active Lyme disease where scores > 60 start to suggest that the Lyme infection is less active. A normal test result would be > 200.

The test can be an indication of progression of disease or of progress in treatment. However, it should be noted that it is not uncommon to see only small changes in the results until the end of treatment where the results often then jump quickly to higher levels. For now, it is my opinion, that this test can both be used as an indicator of Lyme disease presence and as a marker for when to consider stopping treatment.

miamia Rookie
miamia
Posted
Julie,

It sounds like you are getting alot of good info. I can relate to your feelings of not wanting to deal with new doctors but hopefully if you're getting good recommendations you will end up in good hands. :)

A year ago I was pretty much anti-Dr. after all of my experiences with that HEINOUS place known as Kaiser...with the most HEINOUS doctors ever to recieve liscences. :angry:

Ever since....my luck has been good....and the Dr.'s have been great. :)

wow-

rachel that was alot of interesting info that you posted I am printitng it out so when I am thinking clearly I can read it. I am getting so sick of waiting for my results!!!

Julie-

I am so glad you were able to find out some more info- and get moving on the testing- Good work

Green12 Enthusiast
Green12
Posted
He also told me of the best support group in the area...so I may go to a meeting at some point.

Has anyone ever been to a support group??

Do you have to sign up ahead of time or can you just go?

He didnt give me a phone number just the location and when they meet. Its the same info. my Dr. had given me. Does this mean I can just go anytime? :unsure:

I have not ever been to, or participated in, a support group before...well, I take that back, other than here :wub:...but have you checked out the support group section at lyme.org? That's how I contacted the lady I talked to today.

Here is the link for the U.S.:

Open Original Shared Link

Click on your state obviously, then region, maybe the group he suggested you join is on there, with the head person and contact info. I would suggest giving them a call, asking them where they meet, when, where, etc., and break the ice that way.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author

Julie....I think I'll just ask my Dr. on Monday if I can just go to the support group whenever I want...without calling. I hate having to call people. :ph34r:

Miamia,

Did you have the cd57 test done? When will you be getting all of your results back??

Carla....shouldnt you be getting your results back any day now...seems like its been FOREVER. :unsure:

Green12 Enthusiast
Green12
Posted
Julie,

It sounds like you are getting alot of good info. I can relate to your feelings of not wanting to deal with new doctors but hopefully if you're getting good recommendations you will end up in good hands. :)

A year ago I was pretty much anti-Dr. after all of my experiences with that HEINOUS place known as Kaiser...with the most HEINOUS doctors ever to recieve liscences. :angry:

Ever since....my luck has been good....and the Dr.'s have been great. :)

Thanks Rachel :D I am glad you are happy with your doctors and feel in good hands, that make all the difference in the world. I am still very much anti-doctor, pharmaceutical meds, not sure how this will all play out for me... <_<

Hi Mia, how are things going with you? Did you recover from your blood draw?? Omgosh that was heinous, 10 vials, I still can't get over hearing that one. Yikes.

Edit* I just wanted to add the link for the support groups in Canada, for my Canadian friends :D:

Open Original Shared Link

....and Europe:

Open Original Shared Link

....and Australia:

Open Original Shared Link

....and Internet:

Open Original Shared Link

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I am still very much anti-doctor, pharmaceutical meds, not sure how this will all play out for me...

I have a feeling this might change when you feel comfortable and safe with a good Dr. who not only knows what you're experiencing but has treated many patients just like you and gotten them well again. With the right Dr. your fears may dissapate. ;)

rinne Apprentice
rinne
Posted

Patti, sorry to hear you had a bad night. :(

Julie, thanks for the link. :)

I feel like I am back at the beginning as far as finding someone who is Lyme Literate who is also alternative and anywhere close to me.

Rachel, interesting info about the CD57.

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I feel like I am back at the beginning as far as finding someone who is Lyme Literate who is also alternative and anywhere close to me.

Rinne...Julie just posted a link for support groups in Canada. Have you tried calling a support group to find out about Dr.'s in your area? I wonder if you contacted an LLMD who is alternative (such as Dr. Klinghardt or his partner) if they could point you in the right direction as far as locating a good Dr. in your area??

AndreaB Contributor
AndreaB
Posted

That's a good idea Rachel.

Rhonda,

We are here for you as much as we can be (since we can't literally hold your hand and help you). There have got to be LLMD's in Canada that can help you.

Love and hugs....:wub::wub::wub:

miamia Rookie
miamia
Posted
Julie....I think I'll just ask my Dr. on Monday if I can just go to the support group whenever I want...without calling. I hate having to call people. :ph34r:

Miamia,

Did you have the cd57 test done? When will you be getting all of your results back??

Carla....shouldnt you be getting your results back any day now...seems like its been FOREVER. :unsure:

rachel-

yes I had the c d 57 test done- they said it could take up to 2 weeks and I had it done on monday.

I hate waiting

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
I hate waiting

Yeah...waiting sucks. <_< I have 2 1/2 more days of waiting.

Plus I'm waiting for your results, waiting for Julie to get tested, waiting for Carla's results (taking forever by the way), waiting to hear about Lind's test results, waiting for Donna to go to BioSET....waiting....waiting....waiting. <sigh>

Tomorrow I bring my "environment" to BioSET for testing. :D

CarlaB Enthusiast
CarlaB
Posted

The mailman came at three ... our mail is delivered onto our front porch, and when I saw there was nothing from Igenex, I thought about attacking the mailman and asking where it is!!!

Julie, I agree with Rachel, once you know what you're dealing with and have a doc who speaks your language you might feel differently. I've always been very anti-antibiotic (because I always get candida and feel so bad afterward), but now that I know there might be a reason they always made me feel bad and that they can probably help me now if used properly, I'm willing to try.

Thank you for the "sympathy anxiety" about my test results taking so long, everyone!!!

AndreaB Contributor
AndreaB
Posted

I'm waiting anxiously along with the rest of you.....

Rachel--24 Collaborator
Rachel--24
Posted
  • Author
The mailman came at three ... our mail is delivered onto our front porch, and when I saw there was nothing from Igenex, I thought about attacking the mailman and asking where it is!!!

:lol::lol::lol:

Too funny Carla!

rinne Apprentice
rinne
Posted

I really am in the hinterlands you know. :lol:

The support group is non-existent though I am working on the Lyme Ladies Lunching club. :lol: I've talked to two women, one of whom gave me the name of a doctor who though not Lyme literate is supportive of Lyme patients and the other woman who I gave this doctor's name to. I've been visiting the CanLyme site and posting there but the main focus is ABX and I really don't want to go that route.

I don't trust that they know what they are doing. Further, if I can't get a doctor to believe me and the tests are inacurate why would I trust them to treat me so that I will get well. They have already shown me they can't be trusted.

I'm beginning to think that I may be the most capable person to figure this out, certainly I am the most motivated. :)

Did I mention that I live in the hinterlands?

jerseyangel Proficient
jerseyangel
Posted

:D hinterlands :D

Glad I can still catch you over here, Rinne!

AndreaB Contributor
AndreaB
Posted
I really am in the hinterlands you know. :lol:

Did I mention that I live in the hinterlands?

Um, yes you mentioned that. :lol:

Is there any way to see the one doctor so he can check whatever needs to be checked while you go through the treatments you're going through?

CarlaB Enthusiast
CarlaB
Posted

Rhonda, I agree, you HAVE to be able to trust a doctor! That's why I'm hopping on an airplane to go see one!!

We used to live out in the sticks .... truly in the middle of nowhere. When the guy came out to hook up our DSL, he was shocked that we could get it ... he said that he was not only shocked we could get DSL but that we had phone service at all!!!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Beck1430
      - Beck1430 replied to Beck1430's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Reaction to gluten or gastro bug?

      Thank you both so much for taking the time to reply. Cristiana - yes the rashes seemed to resolve when he came off gluten too. I haven’t seen those pictures before, thanks for pointing me to them. I’d say his rash isn’t like the more severe photos which are scabbed and very bumpy. His rash is more like lots and lots of patches of eczema than spots...
    2. trents
      - trents replied to Lburnett's topic in Related Issues & Disorders
      1

      Labs

      Welcome to the forum, @Lburnett! Have you been officially diagnosed with celiac disease? I'm just trying to get a handle on the health context from which your question comes.
    3. Lburnett
      - Lburnett posted a topic in Related Issues & Disorders
      1

      Labs

      Hi there. I was wondering if anyone has experience elevated phosphorus levels? mine are moderately elevated with an elevated BUN also. My total urine protein is flagged as low which I thought was odd. (usually flags if there's high levels). Anyone have any idea what causes this or has had these levels? Thanks!
    4. Scott Adams
      - Scott Adams replied to ChrisSeth's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Waiting on Blood test results…

      It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.
    5. trents
      - trents replied to Beck1430's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      3

      Reaction to gluten or gastro bug?

      I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      127,416
    • Most Online (within 30 mins)
      7,748
    C. S.
    Newest Member
    C. S.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.2k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beck1430
      Reaction to gluten or gastro bug?

      By Beck1430 · Posted

      Thank you both so much for taking the time to reply.    Cristiana - yes the rashes seemed to resolve when he came off gluten too. I haven’t seen those pictures before, thanks for pointing me to them. I’d say his rash isn’t like the more severe photos which are scabbed and very bumpy. His rash is more like lots and lots of patches of eczema than spots. No we have no celiac in the family to my knowledge, though my mum and sister both have autoimmune diseases and wheat sensitivity. I think you’re right and I’ll have to do another trial to confirm if it was the wheat. I’ve been hoping all day that I come down with the bug to rule out the wheat reaction! But the rest of the family are absolutely fine.    Trents - thank you for the info regarding the genes. That’s very interesting and I’d definitely consider doing that as a way to rule it out without putting him back on wheat. I also didn’t know celiacs were commonly intolerant to dairy and soy. I think you’re right and there is definitely enough factors to show something is going on. I think I’ll do a repeat trial of the wheat challenge and if he reacts again I shall look into the genetic testing.    Thank you both so much for your time. Becky          
    • trents
      Labs

      By trents · Posted

      Welcome to the forum, @Lburnett! Have you been officially diagnosed with celiac disease? I'm just trying to get a handle on the health context from which your question comes.
    • Lburnett
      Labs

      By Lburnett · Posted

      Hi there. I was wondering if anyone has experience elevated phosphorus levels? mine are moderately elevated with an elevated BUN also. My total urine protein is flagged as low which I thought was odd. (usually flags if there's high levels). Anyone have any idea what causes this or has had these levels? Thanks!
    • Scott Adams
      Waiting on Blood test results…

      By Scott Adams · Posted

      It looks like they will now order the Tissue Transglutaminase IgA Antibody test, but verify this with your doctor.
    • trents
      Reaction to gluten or gastro bug?

      By trents · Posted

      I think you know enough to conclude that your son either has celiac disease or NCGS (Non Celiac Gluten Sensitivity). As soon as you removed gluten from his diet his stools firmed up. It is also very common for celiacs to be intolerant of dairy and soy, so that is another piece of corroborating evidence. If I were you, I would consider getting your sone genetically tested for the genes we know are associated with celiac disease. There are two main genes looked for, HLADQ2 and HLADQ8. Having either or both provides the potential for developing celiac disease. But since about 40% of the general population have one or both of the genes it cannot be used to diagnose celiac disease. But it can be used as a rule out measure if both are absent, thus pointing one in the direction of NCGS. If one or both are present, there is the possibility of either celiac or NCGS. NCGS is 10x more common than celiac disease by the way. The two conditions share many common symptoms. The difference being that NCGS does not damage the lining of the small bowel as does celiac disease. Celiac disease is actually an autoimmune disorder. At any rate, both conditions require a gluten free diet so, at the end of the day, that is the antidote for both. Some experts feel that NCGS can be a precursor to the development of celiac disease.  I would also make mention of the fact that once gluten is removed from the diet and then added back in for the gluten challenge, reactions are often more violent as all tolerance has been lost.
×
×
  • Create New...