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Omg...i Might Be On To Something

Rachel--24

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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

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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

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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!!!

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      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
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