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Rachel--24

Omg...i Might Be On To Something

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Laura,

Thats awesome that you found a good Dr. YAY!! :D

Sounds alot like my Dr....in that he doesnt *only* do Lyme but all the other stuff too. Thats why for now I'm sticking with him...because I'm not *totally* 100% convinced of my Lyme diagnosis yet and I know that my Dr. can help with *everything*.....which is important to me. Especially since I know I've got alot going on.

I'm super happy that you've got someone who will likely be able to help you figure this out! How exciting! :)

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If 41 isn't necessarily from Lyme, then I wonder if it indicates another bacterial problem. I've never heard this addressed in anything I've read.

Everyone who has Lyme will have a positive 41 band....its the *first* band to usually show up positive...BUT...alot of other people who *dont* have Lyme can also have a positive 41. It just means that your immune system was or is attacking the "tail" of a bacteria.

I'm sure people who arent even sick would have positive 41 bands....because at some point *everyone's* immune system fights off bacteria.....right??? :unsure:

That was my belief anyway.

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Everyone who has Lyme will have a positive 41 band....its the *first* band to usually show up positive...BUT...alot of other people who *dont* have Lyme can also have a positive 41. It just means that your immune system was or is attacking the "tail" of a bacteria.

I'm sure people who arent even sick would have positive 41 bands....because at some point *everyone's* immune system fights off bacteria.....right??? :unsure:

That was my belief anyway.

I know that everyone with Lyme has it ... what I was wondering is if it was significant in someone who didn't have Lyme. Does that person have a current bacterial infection of something else that needs to be addressed? Presumably, everyone who is tested for Lyme is ill, so if this band shows up, but the person is determined to not have Lyme, do they have some other infection? Current infection? Or does it only mean that sometime in the past they fought an infection?

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There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93."

Rinne...I spent alot of time trying to figure this out....since the 30 band was positive on my IgM results.

I saw this info. about 30 being specific for Lyme but then again....I saw that it *wasnt* listed as a specific band on a whole lot of other sites. So I never got a clear answer...the info. regarding this band was conflicting. :unsure:

When I contacted Scott (the better health guy) and sent him my results he said that the 30 band was my most significant band...along with the IND's on 34 and 39. I still dont know *for sure* about that band. I think that its mainly the double starred bands that are *highly* specific for Lyme.

All of the bands listed there *are* double starred bands....EXCEPT for band 30.

I dont know about band 37....its not on the Igenix Western Blot.

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More of what is "out there" about band 30...

In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.

These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93. This is true regardless of whether it is IgG or IgM.. But again, there is no universal agreement on the significance of these bands. Betina Wilska, M.D. from Germany is one of the world's experts on outer surface protein A (31 kDa).

At the international borreliosis conference in Vancouver, British Columbia, I asked her personally about the 30 kDa band. She told me it was the same as the 31 kDa band (osp A). When you have the opportunity to talk to borreliosis experts, this helps in assigning significance to findings, on an imperfect test. As a medical doctor, I am stating all of this with no axe to grind, no professorship to protect, and no preset opinions. Patients, personal research, and conferences have helped me interpret the borreliosis medical literature in regard to testing. Nobody would like to have available a bullet-proof, 100% reliable Lyme borreliosis test more than I would. But we must use what is currently available. I always welcome second opinions.

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An explanation about how Lyme could lead to autoimmune disease....

Dr. Alan Steere, M.D., observed that Lyme arthritis patients with tissue type HLA-DR2 and HLA-DR4 had more severe arthritis and chronic disease. Other tissue types have been associated with an increased incidence of multiple sclerosis and other neurological diseases. It might be that different patient tissue types might account for a difference in patient's symptoms to a greater degree than different strains of the bacteria.

It is known that this bacteria has an affinity for specific tissues. If you have a specific lack of immunity, this may cause the disease to manifest differently in those tissues. For example, let's say hypothetically that your heart is infected with Borrelia burgdorferi bacteria. Perhaps most people make an antibody that suppresses attachment of Bb to certain fibers in the heart. If you lack that antibody, the infection may continue more aggressively and manifest differently - for instance, causing an enlargement of the muscle fibers or destruction of the conduction pathways.

Instead of lacking a specific antibody, perhaps some individuals make a different kind of antibody, an antibody that not only attacks the bacteria - but may attack the heart as well! It is well known and documented that some patients produce auto-antibodies, which are antibodies that our own body produces that attack our own tissues. This is the basis of autoimmune disease. In some Lyme disease patients, an auto-antibody against cardiolipin has been clearly established in Lyme patients with Lyme carditis.

Perhaps, in addition to other Lyme tests, we should also be tissue typing patients and searching for auto-antibodies?

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I know that everyone with Lyme has it ... what I was wondering is if it was significant in someone who didn't have Lyme. Does that person have a current bacterial infection of something else that needs to be addressed? Presumably, everyone who is tested for Lyme is ill, so if this band shows up, but the person is determined to not have Lyme, do they have some other infection? Current infection? Or does it only mean that sometime in the past they fought an infection?

Carla....I couldnt find an answer to your question. I know that a person with Lyme who has been treated and is free of any symptoms can still test positive on a Western Blot for the rest of their lives. It could be because the bacteria is still there but the immune system has it in check....or it could be because its a past infection???

My guess is that this can happen with any bacteria...we can probably test positive for past infections for many years. I'm just guessing though. :unsure:

I would think that if it had any *great* significance....the Dr.'s would look for other bacteria as a cause of illness when the 41 band is positive...but they dont.

I'm sure we come into contact with bacteria each and every day of our lives and our immune system is always fighting those guys off....so it seems like a positive 41 by itself isnt significant as far as determining illness. Again....just guessing.

I remember my HN doc (who is now Donna's doc) telling me that every 10 minutes some type of pathogen enters our body....either bacteria, parasitic, fungus, etc. A healthy immune system doesnt let these guys hang around...but a WEAK immune system cant fight them all off....so some of them *do* stick around. Thats why he's big on testing for parasites and bacteria....like he did with Donna.

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Laura, Great news that you found a Dr you think you can trust ! I had 10 vials of blood taken at my first appt too - awesome - isn't it . :lol: Was B12 tested ? That can go with Hashimotos too. I have to have an injection every 3 weeks for the rest of my life. Does your Doc work with Armour ? Adrenal testing ?I am not sure how my Hashis started but remember a whiplash injury when I was 10. That can trigger thyroid problems they say. I also have an auntie with it, and 2 cousins. Its def not triggered by Lyme for me, as I have never been to Sydney or NSW. Not to say yours isn't - just thinking aloud. :lol:

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Its def not triggered by Lyme for me, as I have never been to Sydney or NSW.

Just so you know....the ticks (or mosquitos) that carry Lyme....they don't recognize "borders". They can travel anywhere. They wouldnt just *stay* in one city.....or one state....or one country. They can travel on pets, on people, on rodents, etc. Lyme is the fastest spreading infectious disease after AIDS....its pretty much everywhere now.

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Oh Laura, YAY!!!!! Sounds like a great doctor!!!!

For Lyme experts, lol. How long AFTER you stop antibiotics would it be safe to test for Lyme? I'm thinking of making an appointment with the LLMD now, and not wait until the Bioset results....

Had a really rough afternoon...felt really weird around 10:00...very lightheaded and very weird...couldn't even sit up at the computer. Stayed that way until I left for my PT/Chiro appointment...felt icky through that, but now feel pretty good. Course, I just took another dose of the antibiotics, so we'll see if that's the culprit in a while, lol.

I think I may have to do traction. :( The chiropractor re-evaluated me today, and the good news is that I have gained a lot of strength in many of the items he tested me on, so I AM improving in some areas. My neck not so much. He wants me to get a cervical roll and spend 10 minutes a day on it...heated would be better. He thinks the traction might help my muscles to loosen up a bit--they have machines in the office that can do that. At least I didn't get a :huh: look when I said I thought the muscles were tight because of mercury, lyme or TMJ, lol. He agreed that any of those things could be contributing, but he still wants to try traction. :P

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Mosquitos carry lyme? :o

Yeah...mosquitos carry Lyme but I'm not sure how common it is for them to actually transmit the disease. There are people on the Lyme board who say they got their Lyme from a mosquito bite.

It seems to be fact that the bacteria has been found in mosquitos though. Maybe at this point ticks are the *main* carrier....who knows what could happen with the mosquitos (or other biting insects) in the future. Its kind of scary. :ph34r:

It is very important here to stress that lyme is not just a tick borne disease. Mosquitoes have been found to be loaded with this organism. It has also been found in mites, fleas, well water, African dust, tears, semen and breast milk.
Results of a study on mosquitos carrying Lyme

The aim of the study was to determine the level of infection in mosquitoes with spirochetes Borrelia burgdorferi sensu lato in the woody areas of Szczecin. The mosquitoes were collected from May to September 2003. The spirochetes, Borrelia burgdorferi s. l., present in mosquitoes were detected in mosquitoes with indirect immunofluorescence assay (IFA) using rabbit anti-Borrelia burgdorferi antibodies and goat anti-rabbit IgG marked with fluorescein isocyanate (FITC). A total of 1557 females and 58 males were collected. They represented the genera Aedes (63%) and Culex (37%). The infection level of the mosquitoes from the area studied amounted to 1.7%. The results of the present study confirm the potential of these arthropods to spread Lyme borreliosis.

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For Lyme experts, lol. How long AFTER you stop antibiotics would it be safe to test for Lyme? I'm thinking of making an appointment with the LLMD now, and not wait until the Bioset results....

I remember reading that someone should be off antibiotics for at least 2 weeks before testing.

I dont know if it depends on the type of antibiotics taken. Antibiotics suppress the immune system....so if you're taking antibiotics that have no affect on Lyme but are weakening your immune system....maybe that could have a negative affect on testing??? An LLMD would know alot more than I could begin to guess about this. :unsure:

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I remember reading that someone should be off antibiotics for at least 2 weeks before testing.

I dont know if it depends on the type of antibiotics taken. Antibiotics suppress the immune system....so if you're taking antibiotics that have no affect on Lyme but are weakening your immune system....maybe that could have a negative affect on testing??? If the antibiotics are killing off Lyme....then it might help wake up the immune system?? I wonder if when *other* pathogens are dealt with....if the immune system then begins to fight the Lyme more aggressively.....because its somewhat less "burdened" by other stuff??? An LLMD would know alot more than I could begin to guess about this. :unsure:

Somehow I totally messed up my edit. :ph34r:

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Thanks Rachel!

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Miamia,

I'm not familiar with that test. I just googled it and here's what I read...

Ok so this is one of the tests I had done the other day and I might be able to get the results tomorrow but I was wondering about the legitamacy of it. Obvioslyu from what we have all read the igenix is the best bet but I was just curious if this is a legitamate source

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Oh Laura, YAY!!!!! Sounds like a great doctor!!!!

For Lyme experts, lol. How long AFTER you stop antibiotics would it be safe to test for Lyme? I'm thinking of making an appointment with the LLMD now, and not wait until the Bioset results....

Had a really rough afternoon...felt really weird around 10:00...very lightheaded and very weird...couldn't even sit up at the computer. Stayed that way until I left for my PT/Chiro appointment...felt icky through that, but now feel pretty good. Course, I just took another dose of the antibiotics, so we'll see if that's the culprit in a while, lol.

I think I may have to do traction. :( The chiropractor re-evaluated me today, and the good news is that I have gained a lot of strength in many of the items he tested me on, so I AM improving in some areas. My neck not so much. He wants me to get a cervical roll and spend 10 minutes a day on it...heated would be better. He thinks the traction might help my muscles to loosen up a bit--they have machines in the office that can do that. At least I didn't get a :huh: look when I said I thought the muscles were tight because of mercury, lyme or TMJ, lol. He agreed that any of those things could be contributing, but he still wants to try traction. :P

Donna-

I think my doc wants me to do the antibiotic s before testing thing- I have an appt wiht him on tuesday so I will find out all the details then and post the info. I am sorry to hear you had such a rough afternoon-.

Have you tried throat coat tea for your cough- just an idea

Miamia

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Donna,

Why do I suspect the meds you are taking are bringing you down......especially when you felt better before your next dose......could be the meds wearing off.

Hope you get this figured out real soon.

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Have you tried throat coat tea for your cough- just an idea

I haven't tried that yet, but regular white tea seems to make it feel better. I'll look for it when I go grocery shopping today (never made it anywhere yesterday morning). However the cough only seems to happen in the middle of the night. Last night it was midnight. I felt just fine, but got up to go the restroom and could feel the junk in my chest...not long after that I started coughing. I cough until it's basically all clear then I dose off again. A while later I wake up and go through the process again.

It's frustrating being sick, lol. :lol: This is exactly the time we need our rest, but the sickness makes it hard to get it.

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Donna,

Why do I suspect the meds you are taking are bringing you down......especially when you felt better before your next dose......could be the meds wearing off.

Hope you get this figured out real soon.

Yep, it's definitely the meds. It happened again last night. About 1-1/2 to 2 hours after I took the evening dose I started feeling the lightheadedness and nausea.

Pretty definitely sure I have a sinus infection, lol. :lol: Had lots of signs this morning. :P May also now have an ear infection. :(

As bad as the meds make me feel, I think they are clearing the head infections, yay. :)

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Yep, it's definitely the meds. It happened again last night. About 1-1/2 to 2 hours after I took the evening dose I started feeling the lightheadedness and nausea.

How long do you have to be on this stuff? Was it two weeks?

Will it take care of the sinus/ear infection? I used to get sinus infections every year and got to the point where I'd call the clinic for a prescription since one was coming on. They wanted to see me the first time and didn't notice anything but took an x-ray or something and found that I was right. :) After that they didn't question me. Seems since we've moved down south a few counties that I haven't had one. My allergies were much worse where we used to live and I'm hoping gluten free will make enough of a difference to actually be able to go out and enjoy the summers again.

Merry Christmas everyone.......I'll be checking in through the weekend but for those of you that won't....I didn't want to miss anyone. :)

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Yes, the typed out instructions from Nutramedix said 1/4 drop if you're sensitive ... the bottle doesn't say that. To do a quarter drop, you put a whole drop in the water, let it sit for a minute, then divide the water into four doses ... don't try to get 1/4 drop from the dropper! :lol:

LMAO....Carla, I woke up this morning thinking about what Rinne wrote re: starting out on 1/4 drop.

I was laying in bed thinking how in the heck do I get 1/4 drop??? :unsure:

Like what am I supposed to do....try to sqeeze out less than a drop?....lick the tip of the dropper? WTH?? :blink:

I came back on here to ask the stupidest question and then found your post. :ph34r:

:lol::lol::lol:

But I'm still a little bit confused on how to "divide" the water :huh: ....oh well...I'm gonna start on one whole drop...seperating a drop seems like alot of work. <_<

As bad as the meds make me feel, I think they are clearing the head infections, yay. :)

Yay Donna...I'm glad the meds are helping with the infections but that sucks that you have to feel bad in the process. :(

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How long do you have to be on this stuff? Was it two weeks?

Will it take care of the sinus/ear infection? I used to get sinus infections every year and got to the point where I'd call the clinic for a prescription since one was coming on. They wanted to see me the first time and didn't notice anything but took an x-ray or something and found that I was right. :) After that they didn't question me. Seems since we've moved down south a few counties that I haven't had one. My allergies were much worse where we used to live and I'm hoping gluten free will make enough of a difference to actually be able to go out and enjoy the summers again.

Merry Christmas everyone.......I'll be checking in through the weekend but for those of you that won't....I didn't want to miss anyone. :)

Yep, 2 weeks. A full 14 days and then I get to start the Prilosec + probiotic portion--that goes for 30 days.

I was getting pretty good at feeling them coming on since I had one about every 6 weeks for 3.5 years, but I haven't had one in just over a year (since gluten/casein free) so I kind of forgot, lol. This one did seem different though so not sure if it started out that way, but it's one now, lol. Last year it started with strep throat which is why I was so worried when I had the bad sore throat for so long, but the doctor did the swab in the office and it didn't show strep this time. A mystery to be sure, lol.

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LMAO....Carla, I woke up this morning thinking about what Rinne wrote re: starting out on 1/4 drop.

I was laying in bed thinking how in the heck do I get 1/4 drop??? :unsure:

Like what am I supposed to do....try to sqeeze out less than a drop?....lick the tip of the dropper? WTH?? :blink:

I came back on here to ask the stupidest question and then found your post. :ph34r:

:lol::lol::lol:

But I'm still a little bit confused on how to "divide" the water :huh: ....oh well...I'm gonna start on one whole drop...seperating a drop seems like alot of work. <_<

Yay Donna...I'm glad the meds are helping with the infections but that sucks that you have to feel bad in the process. :(

Thanks Rachel...I think maybe my body just needs to get "used" to the meds...so far today I haven't felt the nausea and I took the meds about 4 hours ago. Keeping my fingers crossed that it will get better, lol.

As far as the drops, you could just put one drop in a glass of water, stir it up then only drink half the glass and save the rest for later in the day. Saves you from dividing the water into 4 glasses but is still less than 1 drop.

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Rachel, I started out on two drops and am not sensitive to foods, chemicals, etc., except for gluten. My symptoms have intensified and I have no energy ... I'd at least split the dose in half considering all your sensitivities. Just a thought.

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