|
Post by glennb on Jan 5, 2010 2:53:24 GMT -5
I was seen today by a vascular surgeon in regards to the swollen lump in my left groin area. The doctor didn't seem to be too terribly concerned. She thinks it is probably a hernia or possibly a swollen lymph node. Cancer is still a possibility. I will be scheduled for surgery very soon. Then the doc will either fix it if it is a hernia or remove it if it is something else.
I told her about the second mass of 3 centimeters that had been found in the chest area above a lung. I am supposed to get that scanned again in about 5 weeks.
I am wondering if I might have a parasitic cyst or a fungal ball related to Morgellons.
Lately it seems like a lot of people are getting very seriously ill with things the doctors can't quite figure out or most sadly, dying. I wonder how many of us have to become gravely ill or die before the media starts giving this plague the attention it deserves.
I wonder if a proper fund raising drive or demands for research funds from the government to fund the extensive research needed to find a cure for this plague will EVER occur.
I am asking people to donate directly to Clifford Carnicom as his research seems to be the most scientifically promising at the moment. Jan Smith's research is also outstanding and worthy of support.
A professional fundraiser would be a very good idea. My understanding is that they keep a percentage of the funds they raise as their payment so it wouldn't cost any one anything and might successfully raise enough money to get serious research.
I am finding it intolerable to read on a daily basis how very sick people are getting without doing something to try and make a difference. It seems like us Morgies have been dropping like flies lately.
I don't want to sit around watching myself deteriorate day by day without fighting back.
Last time I checked what MRF was doing to raise funds I was not encouraged.
Maybe in 10 years or so the donations generated Good Search will be enough to purchase a microscope.
We need serious fund raising and we needed it years ago.
Is anyone else as perturbed about the lack of funds for research?
|
|
|
Post by lilsissy on Jan 5, 2010 9:15:41 GMT -5
If what we have is related to chronic fatigue we will have plenty of research money and brain power but we have to tie in the connection. Will find information for you on this. Jen www.ei-resource.org/columns/phoenix-rising/xmrv-in-the-spotlight/The Money - We’ve seen that the traditional sources of ME/CFS research in the federal government, the ORWH and the CDC’s CFS program have been left by the wayside. The research money for this virus is coming from other sources. The retrovirologists want in. When something this potentially big comes on the scene they find ways; they shift funds around at their labs, they drop projects…they basically do what they have to do to get their foot in the door. The CDC’s HIV team started their XMRV project the day after the Science paper came out. The WPI, the CFIDS Association, basically anyone with blood samples is getting with requests - some of them from world renowned resesarchers. (The CFIDS Association requires their investigators to bank samples for future study) “There are pockets of money at the NIH that can be tapped” Dr. John Coffinjustfourquid.com/2009/11/26/new-xmrv-replication-study-announced/The XMRV story is fast-moving now as other scientists try to replicate the link with ME/CFS and (I hear on the grapevine) more researchers become attracted by the news to the ME/CFS field in general. The results of this study should be available within six months and a cascade of findings from other labs is expected from next Spring onwards. Whether XMRV is a cause of ME/CFS or just a passenger, it has attracted scientists’ attention to the disease like never before.
|
|
|
Post by mfromcanada on Jan 5, 2010 12:28:13 GMT -5
glennb, I feel the same way as you and lately, I too feel as though I might succumb to this terrible infliction before I even get a diagnosis. I have felt for a long time that our symptoms are similar to someone with aids. In particular Kaposi's sarcoma. I have bad pain in the area of my pancreas, left kidney, heart or left lung, and severe bone pain in my left lower leg and also the main shoulder bone at my right side of back. I am also very emotionally upset about it all because I have lost most of my friends and family. People just dont seem to realize that I actually believe I am dying from this. I feel like a leper most of the time, no one seems to really care except my roommate, my daughter and her boyfriend. Not even my mom, siblings or my other two children have any idea just how much I am suffering. My spine feels like I have molten lava running down it. Yes, I have a few good days, but I know without a doubt that this is progressive and no matter what I take, mms or nutrasilver or whatever, the minute I stop taking it I simply get worse and worse. I hate to be pessimistic but it is my reality. I have sent for the XMRV test kit, and was told that they have been completely overwhelmed with requests. I was put on a waiting list for the kit.
|
|
|
Post by glennb on Jan 16, 2010 5:30:32 GMT -5
The surgeon removed a Lymph node the size of an egg from my inguinal area (where the thigh meets the groin area) I have been draining lymph fluid for days.
The results of the initial biopsy came back. Not good news. I have non-hodgkins b cell lymphoma, probably folllicular.
The tissue has been sent to Stanford U. for further testing. I have an appointment with an oncologist next Tues. He will do staging, a series of more tests to see what stage the cancer is at and if it is anywhere else in my body. Since a cat scan has already revealed a mystery 3 centimeter lump above my left lung I will not be surprised if I find out there is more cancer than just the enlarged lymph node that has been removed.
I have already been told that I will probably need 6 months of chemo.
However I have different ideas regarding treatment. I am looking into going to the Burzinski Cancer Institute in Houston. Dr B. developed non-toxic therapies for cancer treatment of all kinds over 30 years ago. His treatments are non-toxic and effective.
True to form the FDA which persecutes doctors who develop non-harmful and effective treatments for cancer and other disease went on a major campaign years ago to try and shut down the clinic. There were so many grateful patients that had already been saved by his treatment after other doctors had told them that they were terminal that quite an outcry was heard from those who had been treated. Also many donated money for the over whelming legal bills that were incurred by Dr. B as he chose to fight the FDA in court. I believe he spent over 1,000.000 defending his treatment. He won in court, thank the lord, and now runs a world class cancer treatment center.
I am very leery of the chemo therapy being offered by the local doctors. My body is already damaged from the years of Lyme and Morgellons. Also I still have active Lyme and active Morgellons in my body. What would happen when the chemo further suppresses my already depressed immune system?
I think there is a good chance that whatever pathogens and infections I am carrying would really have a chance to take over.
I have read too many horror stories about the chemo.
I am not ruling it out yet and plan to discuss my concerns with my doctor. Hopefully with her recommendation my insurance will pay for the treatment at Dr B's clinic.
Didn't Sue die from b cell lung cancer? I wonder if what she had is related to what I have, only hers affected her lungs instead of the Lymph glands. If anyone knows more specifics about this I would find it helpful to have that info.
I will keep the board posted on my further lab test results and exactly what stage and type of cancer I have.
Having Lyme disease is a risk factor for developing non-hodgkins b cell lymphoma.
Hulda Clarke is right imo, cancer IS caused by parasites.
Anyone suspecting that they might have Lyme (AND IF YOU HAVE MORGELLONS IT IS ALMOST 100% SURE THAT YOU ALSO HARBOR LYME) SHOULD GET TESTED AND TREATED. UNTREATED LYME IS DEVASTATING AND A KILLER. It took at least 8 years for my Lyme Disease to be properly diagnosed and for treatment to start. Because of the myriad problems untreated Lyme can cause it is a very dangerous pathogen to have. I now know that it can also cause cancer.
|
|
|
Post by friskers on Jan 16, 2010 16:59:47 GMT -5
Glenn Im really sorry for the bad news. Im glad your looking at alternatives, i would be weary of chemo too. If im not mistaken this type of cancer is very curable so please dont dispair . With faith and the right treatment Im sure you can beat this.
|
|
|
Post by mfromcanada on Jan 16, 2010 18:35:54 GMT -5
glennb, sorry to hear about the diagnosis. Please look into Miracle Mineral Supplement 2 by Jim Humble. It's worth a try.
|
|
|
Post by kammy on Jan 16, 2010 22:55:42 GMT -5
Yes, Glen, I'm sincerely sorry to hear about your diagnosis, also. Please keep us posted...
|
|
|
Post by ctbarb on Jan 16, 2010 23:59:26 GMT -5
Dear GlennB, I'm so very sorry to hear your diagnosis. But, don't despair, you are going to a great clinic from what I've read about Dr. Burzinski. May I ask a question? Did that egg-sized growth start out as a nodule? About the size of a pea then feel as though it was infected and then started to drain? Reason for askin, I have one in the groin area as well, and it seems to come and go. I now have whatever we are plagued with, in the genital area as well. The pain is mindboggling, let me tell you! Were you in much pain when this first appeared? I know I'm totally systemic with this, and know that Schistosoma, Spirochetes and Strongyloids are all present in my body. I have the samples and digital photos and am taking them to Boston with me at the end of the month - if I make it that long. Please do keep us posted, there are way too many folks here that are being diagnosed with cancer and just based on statistics, we as a group are way above the national norm. Why won't someone pay attention to us??? Easy answer: The idiots that diagnosed us as DOP have ruined any chance of us getting the necessary treatment that we must have! I for one, would like a Class Action Suit against any and all psychiatrists who have diagnosed anyone with our disease, and have literally held us hostage in the medical community as delusional and therefore, untreatable by any other specialty. I also agree with you that a fund raising opportunity that receives national and worldwide attention to get scientists that are honorable, knowledgeable, and are able to work without the long, twisting ties of the government wrapped around their throats, be probed into immediately. There are many companies and to name a few, that issue grants to those who have need of life-saving technical and medical criteria. Those companies I can remember are: The John D. MacArthur Foundation (the former owner of Bankers Life and Casualty Company for which I once worked), The Robert Wood Johnson Foundation (I worked for General Robert Wood Johnson, of J&J), and The Howard Hughes Foundation. Early on I contacted the Howard Hughes Medical Institute for help with our disease but they were unable to help me in this endeavor...perhaps they will change their mind now that so many of us have and are being diagnosed with cancer? Does anyone on this board know of, can do themselves, or have the connections to anyone who can write a Grant??? That's who we need initially to start any program such as this. Check around with those you know, in and out of your own circle of friends, and friends of friends. I personally know of some, but they are all in academia...and are funded by the US Government and cannot legally help me. That's also something important to know and ask...is your company, school etc. getting funds from the US Government? Those groups will not be able to help or they will lost their funding. That said, Glenn, my prayers and thoughts are with you. We will all walk by your side and do whatever it takes to get this ball rolling. It is a wonderful idea...we need a national campaign that is supported by the media. Because, to date, the media and press have left us by the wayside. I know that many of us are so ill or caring for others who are, but those of us who can and will take on this responsibility should begin thinking of ways to get this off the ground, and into the AIRWAVES! Love and prayers, ctbarb
|
|
|
Post by glennb on Jan 17, 2010 0:01:41 GMT -5
I have already started myself on what the Burzinski clinic recomends for vitamen and mineral supplementation for cancer patients. Dr Whittakers Forward Nutrition matches almost exactly the recommended vitamins & minerals to take in type and dose. The only thing I need to take more of is Vit c and vit a.
I can highly recommend this product for everyone. These are the only vit supplements that when taken have caused me to notice a definite improvement in my energy level and overall well-being.
I am also taking oxy caps on a daily basis, CO-q10, sustained release lipoic acid and fish oil.
I bought Essiac Tea, also recommended by the Burzinski Institute and will begin drinking that tomorrow. Dr. B also recommends hydrazine sulfate and a substance that comes from apricot kernals.
I plan on ordering this stuff as well.
I recently went back on Doxycycline and Albendazole and am having good results from that. I will be doing a course of Ivectermin next week and am going to ask the doc for a course of antifungals medication. If I do wind up doing the chemotherapy I want to have everything knocked back as much as possible.
|
|
|
Post by glennb on Jan 17, 2010 0:11:16 GMT -5
CTBarb, I actually didn't notice this lump until it was already huge. I was feeling some discomfort in my leg, dull ache going down the leg and dull ache in back. The thing never did open and drain by itself. I am getting all the drainage because it was a lymph gland. Now it is removed so all the lymph that would have been cycled through that gland has been draining into a special drainage bulb.
When I did first notice this lump in my leg it was even larger. I have a velour pillow cover that zips up. I filled it with dry rice and then heated it in the oven until it was very warm all the way through. I layed that on the area with the lump and left it in placewhile I went to sleep. The warmth and weight caused the lump to shrink considerable over night, down from the size of a large lemon to a large walnut. but then overthe next week it got bigger again. I repeated the heat treatment again that reduce the size, so yes there has been someflucuation in size with this thing. The surgeon said it was the size of an egg when it was removed.
If you have any kind of swelling in a lymph nodde that lasts longer than a week or so you should get it checked out.
I wish I had all the old posts at hand that speak of troubles with swollen lymph nodes and then later diagnosis for cancer. I believe there have been quite a few of those over the last few years.
|
|
|
Post by glennb on Jan 17, 2010 0:18:38 GMT -5
ctbarb,
you posted: " The idiots that diagnosed us as DOP have ruined any chance of us getting the necessary treatment that we must have! I for one, would like a Class Action Suit against any and all psychiatrists who have diagnosed anyone with our disease, and have literally held us hostage in the medical community as delusional and therefore, untreatable by any other specialty."
The doubting thomases in the medical community should be made aware of Clifford Carnicoms work with the abnormalities that are found in the blood of the Morgellons infected. His research on what is happening in the blood of the Morgellons infected documents a very pathological ongoing process. His work should make it clear to even the biggest medical idiot that Morgellons is the result of pathology and has nothing to do with delusion.
I had a couple of uninformed doctors recently get a little smirky with me when I mentioned Morgellons. I told them they were uniformed on current findings and referred them to the images at the carnicom site.
|
|
|
Post by ctbarb on Jan 17, 2010 0:34:05 GMT -5
WAY TO GO, GLENNB!!! Stick it to them! They really have no clue as to what is happening around them and in the world. Things are happening at lightening speed, and they are still moping alongside the snail...OUCH!...reminds me of my snails..... I hope that I won't find this in Boston in the next week or so, if I do, I am ready for them...I too will refer them to Cliff's site, along with the images of documented parasites from all of us! If this does not work, then it's off to the media! I'm so fed up with the merciless way they are dealing with our trauma and deaths from this disease, that it has to be put up front, right alongside the current headlines! What does it take to do that? Do I need to run naked in the streets of Boston??? Now that won't be a pretty site, but it should get some attention?!?!? God, if I ever lose my sense of humor, I'll be done for! ;D ctbarb
|
|
|
Post by lilsissy on Jan 17, 2010 9:27:30 GMT -5
|
|
|
Post by toni on Jan 17, 2010 15:47:18 GMT -5
Glenn,
We're sure behind you, and I sure am very sorry to hear this news.
I did read about this type cancer, and it said chemo is pretty successful for "this type".
I don't honestly know what I'd do if I were in your shoes, because it's frightening to do that, and not to.
It sounds like you're ahead of the game, and that your doctors are looking at everything, and you just keep strong as you are, and positive.
Take care, and wishing and praying the best for you.
|
|
|
Post by bannanny on Jan 17, 2010 22:16:28 GMT -5
Dam it... I'm so very sorry to hear this news glenn. I wonder who's gonna be next every time I come to the board anymore. I'm very sad to know it's you this time. Stay as strong as you can and keep fighting my friend... and if you feel you no longer can, just know that we're here fighting for you all the way. We always will be. I'm not sure of the exact type of cancer Sue had, I know it was in her lung first and went to her brain. But all you have to do is PM Tom (her husband) and he'll let you know exactly what it was. If you ever wanna talk, just call me at (661)724-1163 ok?
I love you ~~ bannanny
|
|
|
Post by glennb on Jan 18, 2010 17:06:26 GMT -5
Thank you all for your kind messages and support. This board has been an important source of strength and fellowship with others who are Morg infected.
I am frustrated that there is not more news coverage on the long term effects of Morgellons. It is becoming obvious that long term this Morgs/Lyme infection is quite lethal.
Clifford Carnicom and other researchers now feel that the entire population has been infected with the Morgellons pathogen through the chemtrail spraying. If nothing is going to be done about it the potential for an eventual cataclysmic Morgellons pandemic is huge imo.
Swine Flue and Bird Flu are pretty inconsequential compared to the damage Morgellons may eventually do.
But there is rarely anything on the news about Morgellons anymore while plenty of scare stories are churned out on the Swine Flu. Is this a deliberate distraction technique being used by the government?
|
|
|
Post by bannanny on Jan 18, 2010 20:17:04 GMT -5
I think it's deliberate glenn... there's something very wrong with the whole way morgs has been handled from the get go. I think we've all come to know there must be a hidden reason why it has been and continues to be too. It just doesn't add up at all... there's just too many people who are suffering from it now.
I hope you have a golden day glenn... I'm praying for you and
I love you ~~ bannanny
|
|
|
Post by glennb on Jan 18, 2010 20:54:46 GMT -5
Yes I agree it is deliberate and too many things don't make sense because public agencies that should be doing something aren't and the media that should be reporting on this basically isn't, not the important stuff anyway and doctors who should be treating this are not (although maybe there is a little improvement here).
Just a few things that don't add up:
The lack of adequate response from the CDC. After all their job is to CONTROL disease and so far they have done nothing to control Morgellons, yet apparently they are willing to rush off to any mud hut village in Africa if a few villagers come down with something unknown and investigate it. Here in the USA people have been begging for help for this horrifying disease for many years and we have pretty much been ignored. No funds for research or community education. Instead we get stonewalling and silence. Congress finally coerced a response from the CDC but how helpful has it been? I still see no funds for research or community education.
Other oddities A fund raising foundation set up to provide money for Morgellons research...but the foundation does no serious fundraising. Even worse I have heard that some individuals who did donate significant amounts of money to the foundation are clueless as to what happened to their donations. The money was apparently never used for research! And an odd "coincidence": The original ground zero hot spots for Morgellons are ALL cities that host major medical university teaching/research facilities that are involved in doing bio warfare research in partnership with Sandia Labs for the US Dept of Defense
These cities are San Francisco (UCSF), Los Angeles (UCLA) Austin/Big Rock, Dallas & Houston in Texas.
There is excellent evidence that shows the pathogens that cause Morgellons are being deliberately spread by the chemtrails. This is news of great importance. Is it being reported in the media? No of course not.
None of this makes any sense unless one views the whole problem in the context of the Morgellons pathogen being deliberately created in a bio lab and deliberately unleashed on the population at large to disable and kill.
|
|
|
Post by lilsissy on Jan 18, 2010 21:05:05 GMT -5
|
|
|
Post by glennb on Jan 20, 2010 2:32:32 GMT -5
I had my first meeting with my oncologist today. He inferred from my initial pathology reports that I may have follicular lymphoma as well as non-Hodgkins b cell lymphoma.
The oncologist remarked to me that the rates of people coming down with various lymphomas is at an all time high and has been steadily increasing in recent years. Can't help wondering if it has anything to do with the chemtrail spraying.
Over the next week I will be getting a lot of staging tests including a head to toe scan in nuclear medicine, a withdrawing of some of my bone and bone marrow, echocardiogram, blood work up, appointments with heart and lung specialists and a rhematologist
I am wondering if anything pertaining to Morgellons will show up in the testing.
|
|