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#1548 - 05/06/07 11:51 AM
Member Profiles
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Willo
Spirochete Hunter
Registered: 11/10/06
Posts: 81
Loc: South Puget Sound, WA State
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Welcome to the the newest section of the Lyme Community Forums: Member Profiles!
As this community grows in numbers it can be hard to keep "who is who?" straight. Bryan was kind enough to create this new section of the forum that allows you to introduce yourself to the other members; we invite you to please post so we can get to know you!
Not sure what to say? A good place to start is your name.  Then take it one step at a time. You can post a picture of yourself (not sure how? Check http://flickr.com/ out!), tell us about where you're from, share your story, your challenges, successes and failures. Tell us about your symptoms, your worst times and your best times. What do you do to help yourself when you are going through a die-off? What are your hobbies that keep you busy? Do you have a Care-Giver?
These are just a few suggestions and you are by no means limited in what you want to share, save any content that is unlawful, threatening, abusive, defamatory, obscene, libelous, or invasive of another's privacy.
This is a safe space for those of all walks of life who need support with TBIs (Tick-Bourne Illnesses). Lyme Community welcomes people of all ethnicities, all religions or faiths, all sexualities and all lifestyles. Some members will enter very personal and intimate posts here, so please respect what you read -- no flaming another member or their choice of treatment, and hateful speech of any kind (homophobia, racism, sexism, ableism, etc..) will not be tolerated. We are here to listen and support, and strive to make this community a safe place for its members to share freely.
As time goes on and as our individual diseases progress, life changes rapidly in the greater Lyme communty. This part of the forum is also itended for you to keep us updated on how you're doing, should you choose to.
Please start your own new topic so you can reply to your post and use the thread as a blog to record milestones in your journey to good health.
If you are still unsure of what to say, or are shy, I have created a form of questions that may make it easy for you:
1. Name?
2. Gender? (sometimes with internet names, or names of different ethnicities than our own, it can be hard to tell)
3. Where do you live? (country, province, region, or nearby city if you feel comfortable enough)
4. If you can't post a picture, please describe yourself (again, if you're comfortable enough).
5. Do you currently live with anyone?
6. Do you have family (related by blood or not -- siblings, parents, grandparents, children, grandchildren, etc.. or very good friends that you consider family)?
-If yes, are they aware of your illness and how supportive are they? What have you done to help your family understand TBIs?
7. Is Lyme Borreliosis a diagnosis or diathesis (diathesis = suspician)?
8. Do you know if you have any co-infections?
9. What symptoms do you have?
10. Do you want to be connected with a Lyme Literate Doctor (LLMD)?
11. Was your TBI(s) a clinical diagnosis or serological?
-When?
12. Where (country/state/province/region) do you suspect the infection is from?
13. What were you doing when you suspect (or know) you were bit?
14. How long did it take to get a dignosis since you first starting feeling sick?
15. Did you have any blood work or other testing done?
-If yes, can you remember which tests were performed, at what lab, and what were the results?
16. Are you undergoing any current treatment?
-If yes, please describe.
17. Have you tried but failed any courses of treatment?
-If yes, please describe.
18. What are your hobbies to keep you busy while going through down times?
19. Do you work?
-If so, where and and what is your job? What challenges do you face?
-If you don't work, what challenges do you face in your day to day lives of trying to keep your proverbial head above water?
20. Do you recommend any websites about TBIs above others?
21. Do you have a Care-Giver (or more than one)?
-If so, who takes care of you when you are unable? How does a CG help you in your day to day life?
22. Do you belong to any other support groups or forums for Lyme and related diseases?
23. Do you receive Federal or State aid?
Misc:
24. How long have you been online? Have a favourite (non-Lyme related) website?
25. Read any good books lately?
26. What is your favourite memory?
27. Are you normally a morning or a night person?
28. Do you have any pet peeves?
29. Who is your hero/heroine?
30. What is your favourite TV Show?
31. What is your favourite type of music?
32. Who is your favourite band or musical artist?
33. If you could learn a new trade or hobby of any kind, what would you choose?
34. How do you feel today?
If you're a Care-Giver for someone with TBIs, we know you face challenges unique to your situation, and invite you to share your journies as well.
1. What is your relation to the patient with TBIs?
2. How does it feel for you to care for that person?
3. What difficulties do you face?
4. What's the most rewarding part of the "job" ?
5. Would you like to be directed to a support group made specifically for CG's and not Lyme patients?
We look forward to getting to know all of you!
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#3509 - 05/22/08 12:10 AM
Re: Member Profiles
[Re: Willo]
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NanaDubo
New Researcher
Registered: 05/21/08
Posts: 2
Loc: Maine, USA
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Hi - My name is Debbie and I live in Maine. I had my first exposure or bite 8 years ago. Three different emergency rooms told me it looked like an infected spider bite.
I hadn't heard much about LD at that point but it dawned on me one day that I might have it. So.... 3 months after the bite I had a positive test and 1 month of antibiotics. When the month was up of course it all came back with a vengeance.
I was sent to a rhuemotologist who gave me a bag of samples of a drug that has since been taken off the market for causing heart attacks. I decided I would be okay and did nothing more.
Of course every year since then some new unexplainable disorder or ailment has arrived which no one could figure out. Last year around this time I had another exposure and got very ill - still didn't get that I never got rid of the first dose and now another one.
If was my acupuncturist who told me she thought I had LD all these years and it all made sense.
I rushed off to an LLND because I like to try to do things naturally. Whoa - I found myself of 7 weeks of Doxy and then Mepron and Zithro. I now feel worse than ever and am going to ditch the antibiotics. I feel sure they have driven things into a cyst form and wonder if I will ever be rid of them.
I have noticed a few posts here about collodial silver which I am having nice results with. I actually know a bio-chemist who makes his own (not with batteries!) and he has infused me with it on three occasions. The first time I was euphoric and felt totally well for a solid week. The subsequent infusions have been a little more powerful and have caused a herx. I believe good quality silver will be the antibiotic of the future.
The other thing I have had good success with is the vibe machine (another Tesla type machine). I have to drive an hour to use it and since my driving skills aren't too good most days I haven't been able to do it much but it is amazing! I at least plan on getting a Rife machine soon.
As I said, I live in Maine, surrounded by woods and deer. Oh well. I have a live in partner and feel blessed that he has been supportive through all this. I am a different person than when he met me and I know it must be difficult for him.
I have two children and 5 grandchildren.
Was a business owner years ago, turned artist, turned bed ridden most days : ) It's okay, I know I will get better.
Anyone who knows of a good Rife type machine that does not cost an arm and a leg, I would love to hear from you. I know there is a section about them but my attention span has just run out.
So glad to have found this site.
Debbie - NanaDubo
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#3510 - 05/22/08 12:14 AM
Re: Member Profiles
[Re: NanaDubo]
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NanaDubo
New Researcher
Registered: 05/21/08
Posts: 2
Loc: Maine, USA
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Willo - I realize I have put my member profile in the wrong place. Can it be moved?
Debbie - NanaDubo
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#4303 - 03/04/09 03:03 AM
Re: Member Profiles
[Re: Willo]
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Sonshine
New Researcher
Registered: 03/04/09
Posts: 2
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Hello, I am new and would like to briefly introduce myself. My name is Cyndy and I live in Bay City Michigan. I have a long and similar story and which I have identified with many who also are fightening this dreadful disease. I believe have Chronic lyme disease and have had it since 1983 when I lived in southern Spain. There was several of us that can down with meningitis. I had pulled hundreds of ticks off my German Shepherd. I supported my husband with antibiotic injections 3 times a day for 10 days. He recovered. I did not recieve any antibiotics, I am blessed to be alive. It seemed like it progressed from there. I have been researching my health history for years and years looking for the curse and affect on me. when I found this Lyme Community and the books offered, I got an epiphany. It all is coming together and I now have maded some startling connections! I plan to be quite Lyme literate and want to be able to help others. Because of my back ground, I feel I can make an impact and help destroy this illness. But I also feel I am racing against time. The neurological affects are becoming more and more apparent and the enemy is taking more and more ground. I started out seeing a Rhuematologist back in 1991. I was then diagnosed with FM. This was after three years of Chronic fatique, severve aches and pains, spasms and first seeing oral surgeon and primary care phyicians. Finanlly in 2006,after finding 10 lesions on my brain "they gave me" the diagosis of MS!
My ammuine system has been trashed and only through strict organic good fresh food and other holistic ways I have been able to keep my head above water. I stumbled onto Royal Rife about ten years ago and began to research him extensively. When my brother was diagnosed with terminal bone cancer in 2007, I told him about Rife. He began doing this and other holistic things and bamm, he has no bone cancer! This is a story in itself! His last MRI should clear. The biopsy should cancer and other tests. The doctors are amazed. Well I could go on and but I'm not sure if this letter is going to go to the right blog or if it will take. I obtained a GB400 in February. I am just begining my genesis. So far no reactions. Please support me along my journey and thanks for listening!
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#4926 - 03/14/10 05:51 AM
Re: Member Profiles
[Re: Willo]
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0310macfreak
New Researcher
Registered: 03/09/10
Posts: 3
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Hi,
My name is Andrea. I live in northern Idaho, I am a wife and mother of 5. I am in my early forties even though with all my illness I think I look much older. I have grayed quite a bit.
I became ill July 2008 and have been suffering ever since. I was first diagnosed with herpes with no blood work done, I just had a big sore in my mouth. Then I went to a different doctor and was diagnosed with mono or cmv just from blood work without actually testing for mono or cmv because I don't have insurance. I was also told that the virus had attack my bone marrow. I have a disfunction of my right arm and a numb feeling down the whole right side of the body(which at one time I was told, "I'm not saying that it is in your head but I don't think there is anything to worry about"). I went through months of trying to figure out what was going on. I am a very active person and this was quite hard for my to handle. I am a house wife, help my husband run a business, home school my children, and was very active in my church. I think one of the hardest things to having lyme is to most people you look pretty good and they can say just start exercising and get active and you will get better. They just don't understand what you body feels like and your brain. I have forced myself to get on my treadmill and did mind over body and what a regret. I know this may sound really jumbled up but my brain function is not what it should be. I this point I am choosing not to drive because I don't think quick enough.
I finally was diagnosed with lyme Sept. 2009 after dealing with a doctor back east and when she heard my systems she said you need to test for lyme. I did put it off for a few months because my doctor finally did a test for mono and cmv and I was waiting for the results. When I got those results and they were positive I figured no use in checking for lyme but after a while I finally decided to go ahead and test.
Through my whole experience I have done all natural treatment. No antibiotics. I want to stick with the natural. I haven't gotten worse and have improved but not back to being able to function normally. My priority is homeschooling and keeping food on the table, which is all prepared from scratch. Then if I get anything else done it is a bonus.
I am now looking at Hyperbaric treatment and rife machine. From my research they look pretty good but I don't know.
I was never checked for co-infections but I do believe I have at least one. I think I have Bartonella. When I read up on the symptoms it was the first time I had explanation for some of my problems. I have bone pain on the right arm and leg (which I told the doctors all along) and also the doctor did say whatever I had attacked my bone marrow which is what Bartonella does.
As far as where I picked up Lyme I have no clue. I never pulled out a tick, never saw a tick. I never had a bulls eye rash. I was in Oklahoma four months before I became ill. I was in New Mexico, Arizona, and Utah a year before. I also Have been to MN but it has probably been 10 years since I was there. They do not think this disease is located in ID but I don't know.
For the first year after I became ill my mom came every day and ran my household. She came any time I would call her even in the middle of the night when I had a high fever. I could not have made it without her. I also could not have made it with out the Lord. He has been my comfort and help when I have struggled with wanting to go into depression.
I was glad to see this available forum. I am stilling looking for any advice and am willing to share anything that I can. I have chosen a little different path than most but it has been helpful and I would not choose any other method. I have done natural for any element I have had over the years and have always have success.
I am doing better but I hope to some day be back to normal. I have bone pain on my right arm & leg, it is numb on my right side. The pain goes up and down I am not sure why. I don't know if it is when I over due or what. I have spleen pain that comes and goes. Fatigue, brain fog, back and neck pain that comes and goes, headaches at times, sometimes I don't know if I am coming or going, muscle cramps that come and go, head shacking that comes and goes( I mostly have that happen at night and it wakes me from sleep, old injuries that haven't bothered me for years now cause me pain. I know there are other things that I can't think of at this time things that come and go.
Thanks for listening.
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