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Post by godog on Oct 2, 2007 20:35:57 GMT -5
Well, good news for me. I went to the doctor today, I have been really sick from a sinus infection and while I was there got my lyme test results from last time. I have a positive marker/thingy for lyme!!! Oh happy day!! I can finally say for sure that I have lyme and now tell people and show them so they know I am NOT a SLACKER! I really am sick. Plus, the doctor was very nice and now knows that I am really sick. I went to him a couple of months ago for sinus infection and mentioned morgellons and he went back and read something and came back saying cdc says some pima something would take away the fibers and so I vetoed that idea real quick and told him not to believe cdc. So anyway, today I told him that cdc now recognises it and so he is open to discusssion and had been looking on the computer about it somewhat since I had seen him and said several websites say there is a cure or cures and I said no and asked him to let me send him some info, and he was very open to the idea. He explained all that about the lyme tests and how you have to have more markers and what less markers mean, less antibiotics and I said it means I'm still sick. It means I'm screwed. He said no, we'll keep trying. Anyway, I'm trying to abridge this, so that is the gist of the conversaion. I am very pleased. I told him there is no cure, but different protocols that sufferers do and that just managing it and try to get symptom free is what we do. Anyway, I think this is a very good thing, he is very open and doesn't seem afraid of the word morgellons and open to learning and learning from me. So I think this is great for me and for him and for all of us in this area, someone affordable. I am going to send him some links and stuff. Any suggestions for must reads' for someone getting up to speed on these two diseases?
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Post by felixwillford on Oct 2, 2007 20:43:01 GMT -5
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Post by felixwillford on Oct 2, 2007 20:44:37 GMT -5
OK, the link didn't color all the way but it worked for me. If it doesn't work for you the book is called: Healing Lyme and in the book he wrote it not only for Lyme patients but for MD's as he knew that so many doctors really have not got a clue on this. Can be purchased at www.amazon.comPhoto of the book: img222.imageshack.us/img222/1218/lymebookra8.jpg
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Post by godog on Oct 2, 2007 20:55:36 GMT -5
Thanks Kmarie, I will copy those links down. I forgot to say, this doctor is at our health clinic here in Springfield, Mo, anyway, they have a lab there, and drew more blood for more lyme tests and also he said for me to bring in specimens of what's coming out of my skin and they could look at it in the lab and he also could send them off, he didn't say where. So isin't that great? Gosh, I am so dam happy that it showed up. Just so I can get some credibility, plus I'm so happy he is being so cool about it. I feel very good about this. There is one other doctor in this town that is lyme literate, won't say the M word and is very expensive. So this could be a real boon for our area.
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Post by bugsy on Oct 2, 2007 21:20:28 GMT -5
Am happy you received some acknowlegement!!! Am laughing my azz off at something you posted....pima you say??? hahahha I've been studying all day about guess what??? Give up?? Potassium Iodide...to treat funal/algae type infections.....Guess what Pima is?? SAME THING. There is merit to it. I have thyroid issues so I have to investigate its uses and side effects but here is the link I had and was thinking of posting...but was a bit skiddish without proper research. tinyurl.com/2qzbdrIt is the treatment for Sporotrichosis tinyurl.com/3yo8yssome freaks even stockpile this for fear of a nuclear attack. I apologize to any freaks out there. Good luck with new Lyme findings.....Neils is well schooled...check his threads....ha ~Bugsy
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Post by valerie on Oct 2, 2007 21:32:41 GMT -5
I am very happy for you!!!
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Post by justhanginin on Oct 2, 2007 21:47:12 GMT -5
Me too! Not happy that you are sick but happy that you will be getting the help you need. Having a doctor to see that is open-minded and willing to help must be a great relief for you. What Lyme test did he get for you? I might actually make a try at getting a doctor to do it.
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Post by bugsy on Oct 2, 2007 21:50:37 GMT -5
As a side note. Johnson's Foot Soap has this ingredient in it and is sold at Target for about 4.00 for 8 pks. Can soak in bath. I washed my hair in it tonight to stop itching. Was actually how I discovered it....checking ingredients. tinyurl.com/356tsqP.S. I flunked my ELISA. lol Luv, ~Bugsy
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Post by janedough on Oct 2, 2007 21:53:01 GMT -5
Oh, what relief you must feel. That is wonderful news. Just to have something show up and know you will not be labled looney tunes. I am so happy for you.
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Post by godog on Oct 2, 2007 22:07:22 GMT -5
Yes, thanks everyone, I am very pleased about my test. I will post more later as I have s ome questions. I'm tired and going to bed. Laters-----------------
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Post by lilsissy on Oct 2, 2007 22:35:09 GMT -5
wow Bugsy , this looks like it would help if morgellons is the nylon eating bacterium because the nylon eating bacterium feeds off radiation through melanin as plants feed off the sun through chlorophyll. lilsissy
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Post by freaky on Oct 3, 2007 4:47:15 GMT -5
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Post by Carrie♥ on Oct 3, 2007 7:54:16 GMT -5
Great news GoDog...glad you'll have some support. I've kinda wished I'd have done the Lyme test thing because I'm sure it's be positive for me and my boy and then at least those suckas would know we're sick...just like you're sayin'. I hope it goes well for you. Maybe you should put your Doctor in touch with Randy!?!
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Post by godog on Oct 3, 2007 8:36:39 GMT -5
You can't still get lyme tests done? I got mine done at our health clinic, didn't even cost me extra on the office call. They took more blood and are going to do a western blot. The one I got the results yesterday was a Lyme IgM, if I understand correctly. Out of thirteen bands, 2 are marked present p23 and p41, which are criteria for positivity are those recommended by CDC/ASTPHLD. Who are ASTPHLD? Anyway, that's it. But, overall, the test is deemed negative except for those. Which is crazy, it means to me, that standards for positivity are way too high, as I guess I'm not c onsidered "really sick". Which is rediculous because I am very sick. But, at least I got those 2 positives out of a possible 13, at least I have a glimmer of proof. So that's good. Now, I am going to collect some specimens for lab and decide what I think he needs to read to get up to speed on this. He said he would read and look at anything I think he needs too. Imagine. After all this time and money and frustration and illness, I have a doctor with an open mind. Yay!!!!!!
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Post by toni on Oct 3, 2007 8:56:03 GMT -5
Godog, I'm sorry you're feeling so ill, and yes that's great you've got a doc who'll listen, finally. Maybe this link can help your doc, which I'm wondering if "any" doc might be able to call Kaiser to see what they might learn about what's been learned or how to treat their patient. www.ktvu.com/health/13810037/detail.html
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Post by toni on Oct 3, 2007 8:57:44 GMT -5
Bugsy, same here on the potassium iodide! ;D GREAT find on the foot soak.
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Post by bugsy on Oct 3, 2007 13:19:11 GMT -5
Freaky, thanks for all of your hard work and posting you provided. It is greatly appreciated. People in here can be so nice. winkin at cha Toni. again THANK YOU Godog for stating the PIMA thing...omg!! You have no idea what you have done. xoxoxo ~Bugsy
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Post by morgellonsmoe on Oct 3, 2007 19:51:38 GMT -5
Way to go GoDog!! sounds like you have a doctor who likes wired stuff and is willing to learn Way too go ! I bring in the latest research from Dr Whymore and the MRF to my doctor whatever is the latest and he is enjoying learning Keep us posted ... He may prescribe a high does of tetracycline for long term and it may after a few months put you in remission . You have to take probiotics while on it and stay out of heat and sunlight . Took me moths to find a doctor that would look and not react good find and Good luck Moe
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Post by liatris on Oct 4, 2007 0:34:45 GMT -5
Godog and Bugsy and all really -
I am not feeling good about something you said your doctor said. If he is saying what I think he may be saying, he is a typical idiot.
If your Lyme test was NOT a DNA or PCR test that checks for the actual DNA of the Lyme spirochete (this means an actual bit of the thing itself) and he was only testing for levels of antibodies - then this thing about less markers meaning less antibiotics needed - total BS. It sounds like the test he did was only checking for antibodies that your body would have made in reponse to being exposed to Lyme. These antibodies are only soldiers that are meant to fight the disease but if the numbers are low (is this what he meant by "less markers" ? ), that can mean that your poor body does not have the ability to mount a strong immune response/defense - NOT that you have less Lyme and therefore require less antibiotics !!! In fact MANY people who's immune systems are not great do not make enough (or any) antibodies to even show up on the test !!! Everytime I suspect Lyme, I always come back with a Negative (NO antibodies) test if the antibody test it used and when I test using the DNA test that looks for bits of teh actual spitochete itself, I get a positive. SO BUGSY (I hope you are reading this) an NEGATIVE result on the ELIZA (antibody test) does not mean you do not have LYME. They like using the antibody tests instead of DNA tests because they are much CHEAPER - insurance companies do not encourage them although they are much more accurate. Also, they do not want people to know they have Lyme so they do not have to pay for antibiotics.
THis is not to say that the DNA test will always show a positive when someone has Lyme, but it is MUCH more accurate than the antibody test.
Don't forget that Lyme is just one of MANY COMMON tick infections. Also very common (but generally ignored) are Babesia microti, Two different Erhlichias (sp?), Bartenella, and three different Ricketias.
Tell your doctor to call Igenex Lab in California to get educated about what the different tests can tell and what they cannot.
I am not sure that understood your "abridging" so my reponse it based on that you only had a test that looks for antibodies (your body's response to infection - fi it was able to respond enough to show up and give you a high enough level of antibodies.)
Good luck with it.
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Post by abbienormal on Oct 4, 2007 2:24:44 GMT -5
Godog,
Hooray for you! It is wonderful to get proof of your illness on paper and it is even more wonderful that you have a doctor who is open and caring. (We were told by an "administrative person" in our Lyme doctor's office: "If you want so and so to find out information about your disease (morgs), then you will have to pay so and so for time spent researching." Do you think this is how early AIDS patients were treated? Is this what happens when your doctor doesn't know about a disease, you have to pay for research? I am so angry I can spit. Then I was told: "You should be more organized when you call the office, so that your chart isn't pulled out and put here and there." Organized lymie: isn't that an oxymoron?
Anyhoo, I am relieved and happy for you. I think what Liatris said is what happened with our first GP. We tripped markers on the Elisa tests but he said that indicated "only exposure to Lyme" that we were negative. Then we took the Western Blot (I may have these tests in reverse, not sure) and we were negative. Then we found an angel who gave us the Igenex and we came back with resounding positive results. We recently took the Igenex co-infections and came back positive for Babesia. (From what I understand, it is very hard to come up positive for any co-infection even on the Igenex, so me and the Mister hit the jackpot.)
Hooray for you!
Abbie
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