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Post by violet on Mar 31, 2012 10:41:14 GMT -5
oh my--have started this post 4 times and have lost the page each time! Hi Violet--thanks for the info. My dr.s name is Dr. Paul Auwaerter and he too has a superiority attitude Oh, yes. :-) I must have one of the few in that practice who is very down to earth. --doesn't feel like Igenex labs is an accredited lab either I didn't know that. Wow. . Just about the most conservative dr. I have ever seen. Did not go to J hopkins for this reason but he was assigned to me after gastroenterologist saw me. Which gastro did you get assigned to? Was he/she able to help at all? Will finish up these battery of tests and be done with it because I doubt this guy has an open mind to look at things like my hair root etc that would give some obvious clue to abnormalities You are exactly right. . matter of fact, I mentioned this to him and he suggested a dermatologist--I am not going to bother, esp. with the luck I have had so far with dermatologists. I've seen quite a number through the years (before I realized what my lesions and fibers were, thinking they were ingrown hairs), and not one of them was of help. Not one. Seem to be the most clueless...could go on and on about the absurd suggestions and care I received from these doctors. Did you get help from your Dr. with regards to lyme? Neither of us thinks I have it...I am open to lyme suggestions but was treated long ago and Dr. Paul Auwaerter doesn't believe in long term lyme therapy. That was the feeling I got about the other doctor whose name I gave you, too.So I wonder why he is even having me retake this test [and from labcorp]. I believe I need long term antibiotic/antifungal therapy--confusing though since you hear morgs people getting better with long term antibiotics/fungals etc, but that long term antibiotics supposedly doesnt cure lyme--apparently just goes dormant until you are off of the antibiotics...? That could very well be. I'm sorry I don't know more about it to help you...but it does seem that many who have morgs have reported that, even after long-term therapy with the meds. That is why it is so important that you are careful not to get desperate and put yourself in the hands of someone who believes you but charges $500 a visit with no insurance coverage and prescribes things in a way no highly respected doctor would ever do. My internist at Hopkins has mentioned that to me a number of times, and I know from experience, too. We all are feeling like you, Itch. It's just awful to have such a condition. And to be doubted or laughed at makes it 10 times harder. But I keep thinking that in the end the truth often comes out. It may take a lot of time, but that is usually the way in life.Thanks everyone for your input!!!
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Post by pdidit on Apr 7, 2012 10:39:03 GMT -5
Hi Violet--so am wondering with your experience, was there anything gained from you going to this guy at Hopkins? Did they help you?
Personally, long story made short, I feel I have filariasis along with lyme--lyme exposure anyway since i fit the criteria for the CDC. Come to find out the guy who discovered the lyme spirochete also has discovered that certain ticks carry this microfilarial worm that lives in your blood vessels. The larger worms migrate later to the lymphatic system. I scrub off a brown/orange color off of my skin every day and have for years and think this must be related to a blocked lymphatic system...and these past 3 months my legs were tripled in size like elephant trunks...among other symptoms including skin eruptions that appeared to be fungal [even by John Hopkins] .
Best line of treatment is DEC + albendazole + ivermectin. I have never really had a huge response from taking ivermectin but perhaps that is because I did not combine it with either of the two above. Will be taking this combination soon and in the meantime, have been doing MMS baths and having good results from that. Sagging skin is tightening and I am starting to be able to see my ankles a bit. Thankfully, I have gone down some 2 sizes in my legs which was so uncomfortable--skin was so very tight and I had so much pain with it. Weird how many variables there are with this disease....I just know i seemed to get everything possibly related.
When you got a chance would be interested to hear of your experience with J. Hopkins. Are you still going to them?
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Post by pdidit on Apr 7, 2012 10:41:56 GMT -5
I believe it--just my car must reek of some of this fungus--I have a canvas top that must absorb my odor too...not good. Btw, was looking at MD Forte again and oh so many formulas...do you use the step III 30 % and if so, which one? I have forgotten, sorry...
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Post by toni on Apr 7, 2012 11:06:18 GMT -5
Yes, the MD Forte has quite a line of products. I use the ( MD Forte Hand and Body Cream) because it's got 20% glycolic acid in it. I think it's around 30 bucks and it lasts a long time because a little really does go a long way. It might tingle or sting (if you're not use to AHA/glycolics) but that goes away after several uses.
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Post by itchin4answers on Apr 7, 2012 17:35:31 GMT -5
Yes, the MD Forte has quite a line of products. I use the ( MD Forte Hand and Body Cream) because it's got 20% glycolic acid in it. I think it's around 30 bucks and it lasts a long time because a little really does go a long way. It might tingle or sting (if you're not use to AHA/glycolics) but that goes away after several uses. Hi toni, We just don't have that sort of thing here in AU which frustrates the heck out of me! I had bought locally a while back some face cream with glycolic acid and I doubt it was 20%, cost over $60. I am still waiting on a shipment of products from USA and that was a month ago!! Happy Easter to you. Love itchin Editing this post as I probably over exaggerated a little. What I should have said is; I don't live in a posh rich suburb where I am privy to these sorts of beauty products, at extremely inflated prices!
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Post by violet on Apr 8, 2012 7:42:12 GMT -5
Hi Violet--so am wondering with your experience, was there anything gained from you going to this guy at Hopkins? Did they help you? I didn't go to him; my internist spoke with him. No, there is no help I know of anywhere really that can help us until what we have is identified.Personally, long story made short, I feel I have filariasis along with lyme--lyme exposure anyway since i fit the criteria for the CDC. Come to find out the guy who discovered the lyme spirochete also has discovered that certain ticks carry this microfilarial worm that lives in your blood vessels. The larger worms migrate later to the lymphatic system. I scrub off a brown/orange color off of my skin every day and have for years and think this must be related to a blocked lymphatic system...and these past 3 months my legs were tripled in size like elephant trunks...among other symptoms including skin eruptions that appeared to be fungal [even by John Hopkins] . Oh, my goodness! Best line of treatment is DEC (Not sure what this is?) + albendazole + ivermectin Were these things you decided to take or were prescribed? . I have never really had a huge response from taking ivermectin but perhaps that is because I did not combine it with either of the two above. Will be taking this combination soon and in the meantime, have been doing MMS baths and having good results from that. Sagging skin is tightening and I am starting to be able to see my ankles a bit. Thankfully, I have gone down some 2 sizes in my legs which was so uncomfortable--skin was so very tight and I had so much pain with it. I'm so sorry. That sounds very uncomfortable. Weird how many variables there are with this disease.... Yes indeed. So many weird and variable issues.I just know i seemed to get everything possibly related. When you got a chance would be interested to hear of your experience with J. Hopkins. Are you still going to them? Absolutely. I have the blessing of a wonderful internist who has committed to looking at all my health issues and symptoms and trying to address each one. Then she wants to look at everything as a whole to figure out if there is perhaps something causing the majority of them. Whether she will find something or not, that is hard to say.
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Post by pdidit on Apr 10, 2012 4:45:39 GMT -5
Thank you Toni and hope everyone had a Happy Easter!
I feel for you itchin! It is hard enough as it is --lots of my orders are getting messed up here lately with UPS as the carriers. But for you, they mess up and you have to wait double the time! So understand your frustration...
Ok, thanks Violet, will check my PM--has anyone ever heard of someone getting better by Ginger Savely? She is in DC and I could use the extra help. BUT, she doesn't take insurance and I don't have out of network benefits--at least for the first 3500--yikes. Checked and Ginger is 600.00 for the first couple of visits then I think it is 200 for 30 minutes. While she seems like a wonderful caring NP, it still burns me as she has been around the block a few times and knows how much financial strain we are in--
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Post by Harry on Apr 27, 2012 17:57:07 GMT -5
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Post by itchin4answers on Apr 27, 2012 20:25:55 GMT -5
Not a bad idea Harry, I have flown Delta Air many times, darn it I had no lesions or fibers to share ...just a bug bite...well that's got to be the easy way out. Ground a flight on the tarmac all for a little iddy biddy bite....
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Post by bb on Apr 27, 2012 20:43:40 GMT -5
pdidit,
While I love Ginger Savely for everything she has done to help us, she did not cure me. I took antibiotics and sulfa drugs for seven months. I'm sure it helped and I sure felt good while on the meds. She stopped the protocol when my CD57 test finally came back normal.
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Post by toni on Apr 28, 2012 9:56:19 GMT -5
Hi Pdidit and BB,
Same here. I was glad for Ginger Savely (since she at the time was the only person on earth it seemed that believed in Morgs), and I too was on a major load of meds continously: antibiotics, antifungals, and antiparasiticals for 10 months straight, and I could feel the "taxing" of the meds on my system, so I voluntarily stopped taking them.
And while (taking the meds) I thought I was kicking morgellons, but as soon as I stopped the meds, it all came back like nothing changed at all, actually... nothing did change from all those heavy duty medications that I'm aware of either.
I personally believe if anyone had gotten better from taking loads of varieties of meds, we'd all have heard about it because that would be some major news.
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Post by pdidit on Apr 29, 2012 10:50:34 GMT -5
Thank you bb And toni for your input--much appreciated!!!
And Harry--haha was thinking the same thing when that news story came out--told a friend, hey, now this is how we can get help!!!
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Post by Harry on May 3, 2012 17:04:54 GMT -5
Hi Itchin, Toni, bb & pdidit. can any of you make some sense of this youtu.be/l7LKHTlZGbQ I noticed a post somewhere else & a person said under black lite the pupil of their eye's glowed greenish or greenish blue & all their friends that did not have morgellons did not, whay do y'all think please?.
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Post by Harry on May 3, 2012 17:08:28 GMT -5
too bad you didn't fly when you had lesions Itchin maybe the C D C would have taken notice then. . pdi you saw this way funny huh?, all of our Doctor's have seen us with all kids of lesions & we were never Quarantined .oops hay Violet how have you been? & toni , pdi , hugs y'all
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Post by toni on May 3, 2012 17:54:20 GMT -5
Hi Itchin, Toni, bb & pdidit. can any of you make some sense of this youtu.be/l7LKHTlZGbQ I noticed a post somewhere else & a person said under black lite the pupil of their eye's glowed greenish or greenish blue & all their friends that did not have morgellons did not, whay do y'all think please?. Hugs back to you Harry. I watched that video you posted, and then looked briefly on the internet for "possible reasons" that person's eyes glowed using a black light, whereas others didn't have that. I didn't find anything substantial as far as exactly why, but... from what I did find made some sense to me. If someone is developing cataracts, that could be a reason, or, if they have a higher content of copper (someone on a site) said that. Now whether or not that's medically correct, I don't know, but... there are medical reasons other than nano tech infection. That gal might want to get her eyes checked by a doctor, because something could be going on, like cataracts developing. Our eyes can do "funny things" given the right lighting too. Like a deer caught in the car headlights, those light up like a light would, or even when we take a picture, certain lighting can make our eyes look red in a photo. As for blacklights, it might be a reflection of deposits in her eyes too, which could be from anything, from meds to lots of things.
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Post by itchin4answers on May 3, 2012 19:34:39 GMT -5
Hi Itchin, Toni, bb & pdidit. can any of you make some sense of this youtu.be/l7LKHTlZGbQ I noticed a post somewhere else & a person said under black lite the pupil of their eye's glowed greenish or greenish blue & all their friends that did not have morgellons did not, whay do y'all think please?. Hi Harry, I haven't a clue sorry. I am having an eye test on Monday I will let you know if they find anything untoward. Love itchin
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Post by toni on Jan 16, 2013 14:18:49 GMT -5
RE: kda 62 and kda 83 www.aid-diagnostika.com/english/kits/Immunoblots/IB_borellia_e.htm#62%20-%2072%20kD62 - 72 kD Heat shock proteins. These proteins are not considered to be specific to Borrelia, because they also appear during many other bacterial infections. But in connection with the appearance of a highly specific band, especially the 93 kD band, they can be diagnostically important, because a broad spectrum of bands in this region points to chronic borreliosis. tinyurl.com/6wdt4aa83-kDa ---------p83 high molecular mass protein [specific for Borrelia burgdorferi / Lyme disease] More on heat shock protein Firefly luciferase is a 62 kDa protein that catalyzes the production of light. In the presence of MgATP and molecular oxygen, the enzyme oxidizes its substrate, firefly luciferin, emitting yellow-green light. www.ncbi.nlm.nih.gov/pubmed/8805533Abstract By screening of a Leishmania infantum expression library with the serum from a dog affected with visceral leishmaniasis, a cDNA clone with seqeence homology to the Hsp83 gene family was isolated. From analysis of the genomic distribution of the cDNA sequence, it was estimated that the L. infantum genome contains 7 Hsp83 genes tandemly organized. The full-length coding region of the Hsp83 gene located at the 5′-end of the cluster was determined. The deduced amino acid sequence of thee L. infantum Hsp83 shiws a high level of sequence identity with members of the Hsp83's protein family from other eukaryotic organisms. The complete protein (LiHsp83) and 4 subfragments (LiAl, LiBl, LiCl and LiDl) were expressed in Escherichia coli as recombinant proteins and used as target antigens in FAST-ELISA assays against a collection of sera from dogs with visceral leishmaniasis. Ninety percent of the sera recognized the recombinant LiHsp83, indicating that L. infantum Hsp83 is a potent immunogen during canine leishmaniasis. Serological analysis of the recombinant subfragments identified the LiBl subfragment, from amino acid 156 to 283, as the immunodominant region of the protein. This region, which is the less evolutionary conserved region of the protein, was recognized by 88% of the visceral leishmaniasus sera. The results suggest that L. infantum Hsp83 and particular protein subfragments may be useful in serodiagnostic assays for canine leishmaniasis. www.sciencedirect.com/science/article/pii/S0001706X96000204Schistosoma mansoni 62-KDA www.jstor.org/pss/3284811 A 62 kDa Heat Shock Protein (Hsp60) of Histoplasma capsulatum (Hc) is an immunodominant antigen and the major surface ligand to CR3 receptors on macrophages. However little is known about the function of this protein within the fungus. www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0014660Hi Ginna, The info you've found here, well, please take a look and lets see what may come from this...because I'm just not sure but (there's something here) I think. The 62kda and the 83kda HSP (heat shock proteins) are not specific to Borellia - yet they seem to be with certain bacteriums - such as the Bacillus O. in the findings in skin with demodex mites. Serum samples from patients with erythematotelangiectatic rosacea and controls were examined for reactivity to Bacillus proteins by Western blot analysis. Proteins to which the sera reacted were excised from gels, trypsin digested, and putative identities were assigned following liquid chromatography-mass spectrometry (LC-MS) analysis. RESULTS: Eighty per cent (21/26) of patients with erythematotelangiectatic rosacea showed serum reactivity to the 62- and 83-kDa proteins of B. oleronius www.ncbi.nlm.nih.gov/pubmed/22709541What I'm wondering is....(could this be the same thing) going on here when we get tested for Lyme with these protein reactions showing up? I sure don't know...(this kda stuff isn't up my alley) haha But, it's there, with both (it's seeming), the mites carrying the bacillus O. and "borrelia"?
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Post by Baraka Obam on Jan 16, 2013 14:38:52 GMT -5
Lyme tests are near useless actually, it is a fact that you can test positive on bands and not be afflicted be Lyme positive, the bands are cross reactive. So lets say you have three cross reactive positives and the doctor see's this, most doctors are simple minded so that would mean YOU HAVE LYME. What if you actually have three different band positives from another source. Just take a look, you should really wonder if anyone has Lyme Disease or do they have a pile of disease. I was very high on band number 7 this number is not even listed here. www.mdjunction.com/forums/lyme-disease-support-forums/general-support/61532-breakdown-of-igenix-test-bands
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Post by toni on Jan 16, 2013 14:56:11 GMT -5
Lyme tests are near useless actually, it is a fact that you can test positive on bands and not be afflicted be Lyme positive, the bands are cross reactive. So lets say you have three cross reactive positives and the doctor see's this, most doctors are simple minded so that would mean YOU HAVE LYME. What if you actually have three different band positives from another source. Just take a look, you should really wonder if anyone has Lyme Disease or do they have a pile of disease. I was very high on band number 7 this number is not even listed here. www.mdjunction.com/forums/lyme-disease-support-forums/general-support/61532-breakdown-of-igenix-test-bandsSomething VERY interesting here. There's a conflict of facts here, (not you Baraka) but this lyme link you posted, is leaning saying that the 83 IS specific to Lyme, YET.....Ginna's article here: Says that does not make it indicative of Lyme. This is where people get misled (((( I am not finger pointing))) but rather I am (only) POINTING OUT WE ALL ARE GETTING CONFLICTING INFO by what is on the internet. And as long as there's a conflict in this, how the heck can we really know what's what. See how Ginna's link says just the opposite of what that Lyme site says? 62 - 72 kD Heat shock proteins. These proteins are not considered to be specific to Borrelia, because they also appear during many other bacterial infections. *see how important that sentence right there is* Ginna's link is here: www.aid-diagnostika.com/english/kits/Immunoblots/IB_borellia_e.htm#62%20-%2072%20kD
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Post by Baraka Obam on Jan 16, 2013 14:58:52 GMT -5
We may actualy have the Zaklee's
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