post-lyme disease also known as chronic lymes disease.

[ladycolorado]

i found some interesting links which speak of this. when went to doctor checkup, said my lymes/babeosis gone, sounded like by products after disease why still sick. but i also read can be reinfected with lymes disease. i hope franky can give me a better explanation of why we still stay sick, it is puzzling. one of the links discusses how in europe people have NODULES on their skin, sound familliar? here are some links, like i said i hope fraky and maybye bubba find some better links on this. some doctors still insist on being dismissive, even if properly tested and diagnosed. I WILL SAY IF YOU HAVE HAD A BULLSEYE RASH, SHOULD BE AUTOMATIC DIAGNOSIS OF LYMES. not all have that but if you do(or did), any doctor that dismisses that is an idiot. :P what gets me is one link i read sceptical of this happening says a scant five percent have problems after a short course of antibiotics (what about the ones ignored left for it to ravage the system like me, who get turned away)? bull, i say. bs my recommendation if can find a doctor familliar with lymes and its coinfections you best chance preferably an ialds doc (international association of lymes disease specialists) most lymes testing is inaccurate, 70% so, an igenex test is very good and one link said can be found in spinal fluid. i hope this is a good topic folks respond to, i am still kind of confused about why post lymes disease makes a person sick. see an ialds doctor does not recommend a quick fix for disease.(one month cured, no followup for still being sick after) here are the links i found i know alot of reading, but i find it interesting. here they are: http://www.chronicneurotoxins.com/le...ymedisease.cfm , http://www.lymeinfo.net/chroniclymedisease.html (note the link for co-infections) http://www.lymeinfo.net/coinfections.html (note the link to ricksetta, mycoplasma, chylamidia (chlamydia pneumonia?) , and up to date patient information : http://patients.uptodate.com/topic.a...=inf_immu/6394 . i have to go over these links more myself. i am just a layperson whom like many in here who is sick. but i tell you those who "dumb" lymes disease down i have little respect for. the part of coinfections is interesting(which i have), even cites mites as spreading disease like some have posted about mice in the home. of course when thought had mites went to er i was dismissed as delusional, i had no swelling, even though i could barely get on sz 10 shoes on sz 8 feet. i wasn't even looked at by a doctor, but a nurse. i posted on this because was not in here, and i think this topic needed to be adressed.(LC)

[ladycolorado]

i find it very odd the co-infections can tag along with lymes disease. i think when the immune system is greatly compromised due to morgellons disease, borellia bacteria sterange things can happen which are just not normal. hope you all give a read let me know what you think, (LC).

[Steve Frey]

Still sick because the bryozoan is still there! The mycoplasma, chylamidia, and lyme bacteria are all a result of the bryozoan.

[ladycolorado]

quite possible safrey. when ones immune system is garbage, then strange stuff can happen. but i GURANTEE you have borrelia bacteria too, and quite possibly co-infection. and i guarantee you also have chlamyida pnemonia, i do know that and morgellons disease co-exist.(it is the trigger and the cause) unless you do NOT have morgellons disease. this is based on information from my morgellons doctor. he has treated morgellons patients ofrom around the globe has disease himself( it put him in a wheelchair for two years), so he is privy to reseach and medical studies we are not. the vaccine for chlamydia pnemonia , developed by the university of vanderbuilt was used sucessfully in london ALL those with morgellons who recieved the vaccine were cured of disease in 7 days in a study. bubba's site tells of this vaccine, which targets weak link in morgellons disease, and since works believe is the cause. as much as i know so far, as i will have new doc soon, trying to stay in the loop and i shall do my best to do so.now, the bryzoan could be the culprit organism, i do not discount you just sharing what i know. the fact that i have regained neurological function since getting good medical care is irrefutable, my bloodwork and medical paperwork shows this without a shadow of a doubt and even before this fought disease naturally had improvement thanks to bubba. i became lesion free thanks to her help and foud my doc. my only ageda is for folks to get better. what is your best recommendations for combatting the bryzoan, i do not discount your research. he is also the chairman of the board of directors of the mrf, dr. william t. harvey my doctor i have been seeing. the gag to protect him is now OFF. does not matter anymore if disclose this now, august 1st the clinic now closed due to dr. martz being ill(somethig like 3 stokes and two heart attacks in last few years). since you have shared much information regarding the bryzoan, i am curious about what to do about it. please share your insight on this, and what has been your treatmet and recovery since your discovery, (LC). p.s do not know why medical highlighted someone has gotten in here and using highlighted words to advertise stuff. going to complain to franky about this.

[Kritters]

Hi Lady C,

What about putting Saf and your doc in touch with each other to discuss it? Win-Win.

About the vaccine...why isn't everyone taking it????

Kritters

[ladycolorado]

kritters it is still in research phase and will contact one in contact with savely. love to help in that regard. just have had to stay quiet, did not want harvey to be harrased but clinic closed so i cannot hurt him now. dr. harvey told me about it in a phone consultation. if i can stay in the loop, so can get in a study instead of having to wait 3-5 years. i do not know a whole lot about it yet. i just know if dr. harvey getting it, all in london study got it cured in 7 days of morgellons disease then i trust it. like me, dr. harvey just wants to help folks. yeah wish could just get it, but not how it works. the reason why been posting on this is to let folks a true cure is being developed. we shall not have to suffer with morgellons disease eternally anymore. i feel by my visit with medical from the mrf they REALLY do want to help us, and unlike karjoo endorsing nutrasilver, the ones who can.all who have not done so should register with the mrf if can, if not i will help those my computer will do it. i trust ginger savely too, she does want to help and does. see, when have had time at the rocky mountain chronic disease clinic only so much time to ask questions. so i only know so much, just a patient, a layperson no scientist or doctor. now you know a little more i hope, at least as much as i know together we shall beat this thing, even if i am ever cured, i shall keep on helping, what i MUST do. i am just ordinary, but hate uneeded suffering.I AM NOT IN THIS FOR MYSELF, or to merely tear down others. i do NOT want folks to give up, i cannot. this is just me , i cannot help it. it is what is RIGHT (LC).

[Steve Frey]

I would love nothing more than to be given the opportunity to present my case to any doctor who would listen with an open mind, the problem is getting the opportunity. I would like more to present my case to someone highly respected in the field of marine biology specializing in bryozoans because I think it would be a much easier sell. Then they could convince the doctors. What doctor is going to listen to someone with no credentials who is making a claim that most people would consider extremely unlikely? It is not like I haven't tried to get opportunities, believe me, I have written e-mails to numerous groups and individuals involved in marine biology, I have written to Dr Wymore on several occasions as well as provided him with numerous images, I have tried posting information in numerous locations on the Internet with the hopes of gaining some professional attention, all to no avail. When I am done writing this post I am going to make a phone call to a bryozoan specialist who has his number posted on the Internet, just maybe I can get his attention.

When it comes to the chlamydia and the borrelia bacterias, as well as the mycoplasma-like organisms, I can provide clear, solid evidence that two of the three are known to be symbiont with certain bryozoa species. Examples of associations between bryozoans and bacteria are abundant and I'm certain that, eventhough I cannot provide specific accounts, the borrelia bacteria will also prove to be symbiont with the bryozoan or it's parasite the myxozoan. I have every reason to believe the myxozoan plays a large role in this disease and it lacks in study even more than the bryozoan.

I do not doubt for one second that I also have these bacterias in my body. There is also no doubt whatsoever that I suffer from the effects of a bryozoan infection known as morgellons, my images alone should prove that. As far as what to do to treat it, I have no idea, other than the copper angle. It's never been my intention to figure out how to treat it because I know that it is not something simple. This disease is extremely complex and I think it's going to take a great deal of effort from a lot of intelligent professionals, who have the technology, to find a way to combat it, but first they have to know what it is , my only goal is to get those people looking in the right direction. Look at the panel the CDC has supposedly put together, there's no marine biologist, what the f..... I mean all you have to do is look at the world wide map of morgellons cases and see that it is obviously a water born illness, do they have to be hit over the head with a brick to see that!

[ladycolorado]

well lidalu i understand, as with my husband being an avioonics contracxtor we have NO insurance. but most insurance companies will only cover one months treatmet even with a positive lymes disagnosis. now keep in mind we are now discussing MY deal i had when clinic open, this was NOT flat rates for all regarding the medicine part. i will saythe treatmet in ot cheap because we ARE very sick, medicines have to be constantly tweaked and adjusted (second guessing will not do can actually make things worse). i paid standard fees for visits, the first being 500 hundred dollars (look at progress reports page 9 tell me if think worth it) the last one or ant after wwere 250 dollars us. keep in mind they were VERY good about saving me money, as i only needed two checkups, harvey saved me money by doing monthly phone consultations (which by time mine ran fron 50 to ninety dollars) to see if meds needed adjusting oh yeah and good hospital to draw blood to make sure liver kidneys okay, around 100 bucks for two automated tests to save cost. they gave me an indivdualized deal with my medicine here, a contract pharmacy gave me 40 percent below wholesale, (harvey also prescribed me ALL generics, to his credit)also, they had deal going with hospital if bill paid in under 90 days you saved 40 percent regarding groshong catheter. my igenex test ran 190 dollars. so, not cheap but these folks most definately DO NOT GOUGE. yes, i had to beg my family to help, and the price i pay is hubbie working away from home. it is hard but hey my most expensive iv meds ran around 850 dollars for everything needed for one months care.. keep i mind, that includes all the tubes, dressings, and replacement ends for catheter, and pills alcohol scrub kits to keep wound site clean, when i say everything i mean everything. in the beginning , two big huge old boxes come to my home, and had delivery day got it brought here at NO charge. i know of one person who paid 100k just for ONE iv med (who shall remain anyonomous). think of open heart surgery, or cancer, how much cost would be with no insurance. the docs who gouge , are ones who charge 1600 dollars for first visit, or dr referral. dr. george scwartz in florida is one of these. yes, he wants to help, but at the same time would like to charge alot and feels disease contagious person to person, and would like us listed and segregated from society. i have spoken in person on the phone more than once. he does help folks, but i think going wrong way prescribes TOO many antiparisiticals, and also antifungals which can compromise the liver. not one size fits all for treatmet, but in my case been getting, antibiotics, an anti-tuberculosis medicine (which fights chylamidia pneumonia) , an antifungal to take one pill 1 to 2x weekly, and periodic bursts of taking mutiple antiparisitiicals at once. and it has worked VERY well. to belive me read my posts, you will se i DEFINATELY have improved tons. so yeah, we are not talking cheap we are all very tight because of financial devastation to have relief, but like one member wrote me, you gotta do what you gotta do to become well. this is why like bubbas treatment steps which are only pallitve not curative, but mostly inexpesive stuff that WORKS. the alternative was unthinkable, i had months of agony waiting to just see doc (they had 5000 man hours needed to care for patients and only a 1000 to do so) so i fought in begining the disease naturally. but to have my brain back ios PRICELESS, ad i did need this medical care as was on way to becoming crippled in my case. but also why i push dumb old things like green cumin powder, it is cheap ad effective (trust me i know when something does not help, and was how i began eating again) with NIL negative side effects. so i have tried my best to share the information i have learned to the best of my ability just being average layperson who happens to just be sick like the rest of us. i try to help the newbies to keep them from wasting money as i did , and to keep them from giving up and if like me, fight disease early like i was lucky enough to do. morgellons prays on ones weakesses, is nothing to play with (although not fatal) and is systematic, much more than skin. i have been in contact with one person ill with this for 27 years, and i enjoy it because she knows alot about herbs. i canot blame folks for being disgusted with the medical establishment, i have seen iot too. what i am trying to do is let folks know there is good care out there so do not waste money and deteriorate because they cannot find good medical help. and the closing of the clinic is NOT the end, actually will be a wonderful new chapter in comprehensive care (trust me) i can not publicly post on this for obvious reasons, but i can pm. the fact have found a cure and those willing to research a disease not even named a disease or thought to exist by most IS something. so i am just putting what is out there and what i have found out. how can a disease not recognised be insured? read my posts all, and decide for yourself. i think you SHOULD throw stones at glass houses but only if trapped inside, lol (LC).

[ladycolorado]

Originally Posted by safrey

I would love nothing more than to be given the opportunity to present my case to any doctor who would listen with an open mind, the problem is getting the opportunity. I would like more to present my case to someone highly respected in the field of marine biology specializing in bryozoans because I think it would be a much easier sell. Then they could convince the doctors. What doctor is going to listen to someone with no credentials who is making a claim that most people would consider extremely unlikely? It is not like I haven't tried to get opportunities, believe me, I have written e-mails to numerous groups and individuals involved in marine biology, I have written to Dr Wymore on several occasions as well as provided him with numerous images, I have tried posting information in numerous locations on the Internet with the hopes of gaining some professional attention, all to no avail. When I am done writing this post I am going to make a phone call to a bryozoan specialist who has his number posted on the Internet, just maybe I can get his attention.

When it comes to the chlamydia and the borrelia bacterias, as well as the mycoplasma-like organisms, I can provide clear, solid evidence that two of the three are known to be symbiont with certain bryozoa species. Examples of associations between bryozoans and bacteria are abundant and I'm certain that, eventhough I cannot provide specific accounts, the borrelia bacteria will also prove to be symbiont with the bryozoan or it's parasite the myxozoan. I have every reason to believe the myxozoan plays a large role in this disease and it lacks in study even more than the bryozoan.

I do not doubt for one second that I also have these bacterias in my body. There is also no doubt whatsoever that I suffer from the effects of a bryozoan infection known as morgellons, my images alone should prove that. As far as what to do to treat it, I have no idea, other than the copper angle. It's never been my intention to figure out how to treat it because I know that it is not something simple. This disease is extremely complex and I think it's going to take a great deal of effort from a lot of intelligent professionals, who have the technology, to find a way to combat it, but first they have to know what it is , my only goal is to get those people looking in the right direction. Look at the panel the CDC has supposedly put together, there's no marine biologist, what the f..... I mean all you have to do is look at the world wide map of morgellons cases and see that it is obviously a water born illness, do they have to be hit over the head with a brick to see that!

i do ot discount your theory, i think very good work, safery. however i myself am not qualified to really judge on this matter. the fact you revealed to me that latex gloves can be penetreated by what i call nematodes, (in your case the bryzoan) is priceless. that and your wonderful photo of the black specks which revealed they are the nymph forms of the fibers (thanks for solving that mystery for us) is amazing. it is just that i myself am not qualiffied to say indeed, that the bryzoan is it, the offending organism. i do know that is focusing on one organism cured this stuff it would have already been solved that way. i do believe however your theories have merit. however, i will NOT be pulled into a debate about it, my focus if for folks to feel better, and to share what little information i DO know, thanks for all the GREAT info, (LC).

[Steve Frey]

I am not wanting to debate with you Lady C, I am just posting information whenever and wherever I can. There is no debating this with me, my claim is not a theory, it is a fact, and there's no debating a fact. as far as this statement goes

wonderful photo of the black specks which revealed they are the nymph forms of the fibers

I want to make it clear that this is not my position on this image. I strongly believe that the objects in this image are myxozoans, a parasite of the bryozoans. The fibers themselves I believe may or may not actually be alive. It is known that in some species of bryozoan, the spiculates(hair-like rootlets) themselves are actually another life form of the bryozoan just as the avicularia, the vibraculum, the kenazooid, the gonozooid, the rhizooid, and the autozooid are.