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Post by bessie on Feb 10, 2009 18:38:37 GMT -5
The next meeting of the Tampa Bay area Support Group will be meeting on SUNDAY Feb 22, at 2 pm. This group focuses on support, advocacy, and the exchange of information. Several area doctors have attended in the past, and we expect at least one new doctor at the upcoming meeting. Dr. Cheryl Reed has been graciously offering the lobby area of her medical practice for this meeting. She is a powerful and compassionate ally for all of us. The address is: 2605 W. Swann Ave. Suite 100 Tampa 33609
If you live in Florida I strongly urge you to attend this meeting. There is strength in numbers!
Bessie
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Post by cheetah on Feb 10, 2009 19:20:40 GMT -5
Bessie this is so wonderful that you guys have this support group going. God bless you all and those Docs that are supporting.... this is just unbelievable. I would really like some updates if you wouldn't mind. That is just fab !! Thank you so much for sharing this. This would be a great idea for all areas. Please keep us posted. This is great motivation. FORTITUDE BABY
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Post by felixwillford on Feb 10, 2009 21:08:45 GMT -5
Thanks for the info Bessie, I remember DC posting about this in a prevous thread. Did you go to the first meeting and how did it go.
I think it's a great idea and I hope many in Florida come.
Is that a new MD treating Morgellons? If so that is great to know more are out there. Is she a Lyme MD? I am just curious. I still have never mentioned the "M" word to my doctors.
It would be nice though to not be afraid to say Lyme or Morgellons or even "FUNGUS" which I feel is a big part of the illness.
Well be sure to let us know how it goes. Nice that you folks in FL have this.
Perhaps it will show up in more states. I remember a friend back in 2000 who went to Fibromyligia (sp) support groups because no one believed she was ill. Now thinking back, I have to wonder if she had morgellons considering all her symptoms.
I worked with her and haven't had contact since 2000 so I will never now for sure what her illness was.
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Post by bessie on Feb 11, 2009 10:01:20 GMT -5
Thanks, Laur & kmarie, This group has been meeting since October, and each has been a little different. There were five doctors at the first meeting who were there to learn, and one was very vocal and advised us NOT to treat ourselves like lepers by hiding and isolating. This doctor is very experienced in public health issues and came from an historical perspective regarding other illnesses.
Dr. Reed has been very good friends with an RN for many years. Just over a year ago, the nurse's skin began to change it's texture/color, and Dr. Reed asked her what was going on. At that point her friend told her that she and her children were experiencing some horrible symptoms since cleaning up a sewage back up in their home.
Together they researched the symptoms and found "Morgellons". Dr. Reed drove her friend from FL to Austin for last year's conference. ID or Lyme are not Dr. Reed's specialties, but out of the suffering of her friend and a deep sense of compassion she has become involved. In no way does she present herself as an expert in Morgellons, nor is she soliciting business. She trying to learn all she can, and provide the space and bringing in other doctors who are friends of hers and believe in her professionalism. Largely, attendees have shared their experiences - both their painful ones and the ones that have been helpful (treatment strategies, etc.) Another project that we are taking on is to distribute the information that Laur has assembled and distributed to leaders in her own state of Utah. (Thank you SO MUCH, Laur!!!)
There will be a Health Conference in the fall at Dr. Reed's church. One item on the agenda will be Morgellons. The conference is directed at both medical professionals and the general public. CME's and CEU's will be granted. Details will be made available as things develop.
As Shay said in another thread (more or less), this is about MORGELLONS. It's not about alliances or politics. I hope that people put the priority of solving this mystery FIRST and support ALL efforts directed at that effort.
Hope to see fellow Floridian sufferers at the next meeting.
Bessie
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Post by bessie on Feb 11, 2009 15:01:52 GMT -5
kmarie - I think the real reason that this group has developed is actually a coincidence of the individuals who started it. That's not to say that there aren't a HECK of a lot of cases here, but if Dr. Reed didn't have this friend (and wasn't the kind of woman that she is) it probably wouldn't have happened. There is another support group around LA. I think they call themselves "Kritter Warriors" or something close to that. I guess it's just a network that developed among individuals who found each other one way or another. I know that Laur had started one in Utah at one point. Something that I realized is that it takes a lot of energy to keep these groups going. I think that is because - first and foremost - people are sick and it takes determination to push oneself enough to commit to it. There also no magic cures that are going to emerge - and people may be afraid of cross-infections. Depression is also a "weight" that keeps many of us back. It's going to be even tougher with the pressing national issues that get worse by the day. And I do think that mold, pesticides, bugs, etc, have something to do with it - and the hot states have an abundance of these. Bessie
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shay
New Member
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Post by shay on Feb 11, 2009 15:03:35 GMT -5
I first felt the affects of morgellons while on a bike trip in the hot desert of Arizona. Doesn't mean that is where I contracted it. It is all guess work on this subject. It is true one can get ill from sewer or any other disgusting thing such as mold but we really do not know for fact how we have come in contact with morgellons because if we did we would have the cause. The age old question: Why are some family members sick with morgellons in the same household and some are not? Why are some family members from seperate households feeling morgellons and some are not? Why is one spouse feeling the affects of morgellons and the other is not? Genetics? Bad luck of the draw? Don't know do we? For all we know this could be a terrible allergy from something. GM crops that our bods are not taking kindly to. Chemicals that our bods are rejecting. Then we could start talking about parasites and conspiracy theories which no doubt there are plenty of Just because people have parasites does not mean it is morgellons and just because there are government operations that are not for the general public does not mean it is morgellons. I am not saying it is or is not parasitic or government and I am not trying to tick anyone off but just because we think it it does not make it true. and there hasnot been anything identified that proves or have I missed something here Our bodies are quite amazing. Tells us when something is not right. Fights off what does not belong there and tries to purdge and in the process some survive and some do not...just like any other disease. Don't mean to sound cold over here but again, that's the facts jack. This is why it seems to be so important to cleanse and eat the best we can Look at the people that talk about all the good stuff they take for their bodies and what good experiences they are having. Still some take supplements and meds and they are still so sick. But in the end it does not hurt to take care of the body Still don't know the answers Now Don't know why the geographic hot spots Could be the population but logically speaking NOBODY knows. sure wished we did Oh and just for note I went to Florida (again on a bike run) some years back and did not feel any worse or better. Just don't know now do we? and about the meetings in Tampa good deal and good luck Give a thanks to the Doctors that care The meetings should help alot of people that need support We all need support still not knowing
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Post by cheetah on Feb 11, 2009 17:38:23 GMT -5
Oh my gosh Bessie..... no really.........Thank you!!!! For being brave enough to do this and take this on and putting yourself out there.. JEEZ LAWEEZ !! I am so loving you. I am glad you are back on the board I have missed you here. I wished I could go around the Country side making appointments and distributing those myself and whatever morgies would like to join me but we know that is not possible. (that actually sounds fun in a crazy kind of way) but really thank you for what you are doing. The Health Conference in the fall at Dr. Reed's church............... One item on the agenda will be Morgellons. The conference is directed at both medical professionals and the general public. CME's and CEU's will be granted. Details will be made available as things develop... Are you freakin kiddin me? This is the bomb !! I cannot believe what I am reading ...hip hip horay this is so what is needed. So COOL !! hey and shay I agree I have no idea where or how I came upon becoming a lucky morgie I do remember when it first started hitting me but like you said that does not mean that is where I actually contracted it. All those questions that we have no answers for are just a few of the questions because there are 100's more that keeps this brain of mine way too active at night ........ such a mystery as we just do not have enough facts yet as in not enough research. I have been to Florida as well. I really felt no different either. No better No worse but yet again these symptoms are so unpredictable and everyone is so different. I can go about my business doing my healthy stuff and then BAM out of no where it hits again and then I can slack on my healthy stuff and same same ... And you are right...We all need support Sounds like you like bikes a little bit sorry all didn't mean to hijack the thread. and that's a fact jack..sorry shay... but I like it when you say that. I might take it on as my own
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Post by cheetah on Feb 11, 2009 22:22:13 GMT -5
What happened to the post Kmarie wrote regarding Florida and the sewer?
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Post by bessie on Feb 12, 2009 13:15:24 GMT -5
Cheetah - Thanks for your comments, but I am only one of several involved in this group and only partly responsible for its purposes. Reading from the AIDS activism playbook, the more organized we are the more likely we are to move the research along, find answers, and take this out of the "delusional" realm and into the light of day. Thank you for last year's fund raiser; is there a date for this year's event? And thank you for everything else you do. Bessie
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Post by cheetah on Feb 12, 2009 23:51:41 GMT -5
Oh I hear you Bessie. I am just so excited that it is all happening and you are a part of it. It's so exciting. (I'm all giddy and such) Thanks for everything you do as well and for asking about this years event. Working on it... Just had a meeting Sunday with Abate of Utah and it is sounding pretty good. I 'll let you know when we come to an agreement on dates and such. Shooting for August so I better get off my bootie and get crackin. Crack that whip... (NO NO Frisky Friskers) teehee Happy Valentines Day.
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Post by bessie on Feb 18, 2009 11:39:53 GMT -5
Just a reminder that the Tampa Bay Support Group will be meeting this coming Sunday at 2 pm. We anticipate that 3 doctors will be in attendance, and possibly an entomologist. One member will be bringing her Zapper (which she states has helped her enormously) and demonstrate it use for us. We expect several first time attendees. If you live close enough to drive, I hope you make the effort to be there. Unity and communication with open-minded medical professionals is one avenue of promoting our shared cause. Bessie
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Post by felixwillford on Feb 18, 2009 12:34:07 GMT -5
Bessie,
Hoping the group has a a good turn out! I believe that more and more people will decide to show up as the meetings continue.
Please report back, cuz I have wondered about that zapper. Heard so many conflicting reports on it which makes it hard to decipher.
Perhaps, as in meds, it must vary from person to person. I have never tried it but have thought about it.
Thanks
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Post by bessie on Feb 23, 2009 12:42:44 GMT -5
The fifth monthly meeting of the Tampa Bay Support Group met yesterday, 2/22/09.
Three new people attended, two sufferers and one spouse. In total, 12 people attended.
An ozonator was brought and shown to the group, and an explanation provided as to its operation and potential use in helping to keep the environment clear. The member who brought it has used it successfully, and it was noted that at least 2 doctors who treat Morgellons use these devices in their offices.
We were dissappointed that the demonstration of the Zapper did not occur as planned. Three members who had planned to attend cancelled the day before.
As has become the custom, the opportunity for individuals to describe their experiences was provided. Treatment strategies that have been successful as well as those that have not were discussed.
Some time was spent speculating the cause and interpretation of symptoms.
It was noted that Dr. Reed had appointed a "group secretary" (yours truly) during the January meeting who is responsible for writing up and disseminating the group's activities and plans, and coordinating future activities of the group. Group members are asked to contact the secretary if any agenda item for future meetings is being requested. If the issue is a major one then the request for inclusion will be channeled to Dr. Reed for review prior to approval.
Dr. Reed spoke with a reporter from the St. Petersburg Times this past week regarding doing a story on Morgellons. The issue was brought up at the meeting in order for the members to consider participating in the interview, and to understand the protections and limitations involved. All members were interested in participating, and two of them were open to disclosing their identities. As some members have jobs in health care and have children to support, they chose to remain anonymous for the interview. It was noted that there are potential ramifications regarding employment and the reactions of schoolmates for young children. Given the mysteries that currently exist surrounding this condition (communicability has not been ruled out), discretion was chosen by those who must work to care for their children, as well as the potential for additional emotional trauma to these children. Dr. Reed will arrange a date and meeting place (not the office) for the interview(s) to occur. Dr. Reed mentioned that the reporter was very understanding to the sensitivities involved and is anxious to make comfortable arrangements in the near future. When these details are worked out, all members will be contacted directly. If anyone here has not attended meetings yet but are interested in being part of the interview, please PM me.
Discussion about the Second Annual Scientific/Medical Conference on Morgellons took place. It is noted that the registration deadline for the conference is March 16, 2009.
The next support group meeting is scheduled for Sunday, March 29, 2009 at 2:00m, same location.
Bessie
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Post by felixwillford on Feb 23, 2009 12:55:49 GMT -5
Bessie,
Thank you for the report.
They made a good choice for secretary since you have excellent verbal/writing skills that can be understood clearly.
Congratulations, Kmarie
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