Hi all: I was sick with Lyme for 2 years: I am mostly back at work and graduate school, though I do have some 'sick' periods that I am addressing with herbs and detox. Dr H & John really did save my life.
I am now in a PhD program at Rutgers (had to defer for a year because of Lyme) and I just can't get Lyme out of my mind as a topic of study: I decided to write one paper (for a class, not publication or anything) and am using some text from the public forum here. I am asking people 1- why they came to Lymenet and 2- how did Lymenet end up helping (or not) and where they are now in terms of health and treatment. You can pm me here, or send an email to: [email protected] if you would like to share your own story. Of course no demographic or identifying info is used, except sex and general age (if it's there)
Hang in there all of you - Pam
Posted by Keebler (Member # 12673) on :
- Pam,
I see that you are asking for help but I cannot read your second paragraph. There will be many others here, too, who cannot read solid blocks of type.
Nystagmus and other issues can cause solid text to just swirl into a pulsating grey blob.
2-3 sentence paragraphs are all some sets of eyes can sort out.
For cognitive sorting - each paragraph is best with just one main point.
I'll break it up so that others can read, and you can get more help. For future posts, it's just good to remember. -
Posted by Keebler (Member # 12673) on :
- psr1 / Pam writes:
Hi all:
I was sick with Lyme for 2 years: I am mostly back at work and graduate school, though I do have some 'sick' periods that I am addressing with herbs and detox. Dr H & John really did save my life.
I am now in a PhD program at Rutgers (had to defer for a year because of Lyme) and I just can't get Lyme out of my mind as a topic of study:
I decided to write one paper (for a class, not publication or anything) and am using some text from the public forum here.
I am asking people
1- why they came to Lymenet and
2- how did Lymenet end up helping (or not)
and where they are now in terms of health and treatment.
Of course no demographic or identifying info is used, except sex and general age (if it's there)
Hang in there all of you -
Pam -
Posted by psr1 (Member # 22957) on :
Thanks -
Posted by Keebler (Member # 12673) on :
- 1. why I came to LymeNet: to learn.
2. How LymeNet helps:
as a source of information with links to articles & books from true experts, etc. as well as sharing of cautions and successful measures from others' experiences.
3. Where now in terms of health and treatment?
Dx: '97: Borrelia, Human Monocytic Ehrlichia, Babesia. No treatment available. I created a patchwork over the years, here and there.
Did learn to read, write, walk & talk all over again TWICE, so limited success. Still can't do any of those things with any noise or movement near me.
Health: homebound. Severe hyperacusis, sensory overload, dizziness & balance off kilter, seizures. Severe intolerance to activity. Pain, weakness, profound & deep exhaustion just off the charts.
(comprehensive) Treatment: unavailable.
Lyme is nearly "illegal" in my state. Other tick-borne infections are also generally dismissed.
Unable to tolerate many Rx anyway, yet have no funds remaining for targeted professional naturopathic treatments that did help very much as long as I could continue it.
Diet: the best possible on a shoestring. No processed foods, no additives, no simple carbs. No junk. Ever.
Studying what I can do on my own with nearly no money. [Not complaining, really. Just answering the question for the record.]
Why I post at LymeNet?
To share literature I've found -- and to help others learn from my experiences, bad and good. What helps, what doesn't.
To discover HOW ELSE success might be achieved.
And to keep the flame of hope alive for myself and others. In truth.
------------- I think many with lyme will just bee too tired to write much. Most energy must be spent on the matter at hand and what can help.
Also, many have no way to get any treatment so this can just go on and on . . . forever?
I wish you could address lack of available care as I'm not sure anyone will just want to read about how sick many of us feel.
To me the real question is why has this happened and why it's so hard to get treatment and support.
The work of Pam Weintraub is excellent. And that of Lorraine Johnson.
If I were to write the truth of my experience with this, it would cripple myself and the reader. This article is so very near my experience. So very near to my daily life:
==========================================
Not just "when to suspect" but "how to understand what's going on" --
Lorraine Johnson, JD, MBA is an attorney advocate on issues related to the medico-legal andethical aspects of Lyme disease and has published over 30 peer-reviewed articles on this topic.
(What ILADS is) . . . WHY you need an ILADS-educated, Lyme Literate Doctor -
Posted by Keebler (Member # 12673) on :
- Did you get what you needed? -
Posted by Healerdealer (Member # 23032) on :
Hi Psr1,
Sending you a PM.
Healer
[ 02-01-2013, 06:56 PM: Message edited by: faithful777 ]
Posted by Tincup (Member # 5829) on :
You made me laugh this morning!
You said.. "Of course no demographic or identifying info is used, except sex and general age (if it's there)."
I will not be able to comment on those topics for risk of being tossed from the board. HA!
1- why they came to Lymenet
Some of us were here on the previous LymeNet board. I think there have been 3, maybe 4 prior to this one. LymeNet was one of the first (and an excellent) resources for Lyme patients, starting with a newsletter many years ago, then going online.
I found LymeNet because I was told early on that everyone was cured when treated with 2 weeks of antibiotics. I felt I was "unusual" and was trying to figure out what I could do to get better because although I was supposedly cured, I was sick beyond belief.
I stayed at LymeNet because I learn, I can share to help others avoid problems I had, and because our members are some of the most wonderful people on earth.
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and 2- how did Lymenet end up helping (or not) and where they are now in terms of health and treatment.
LymeNet was a life saver for me and many others. Literally. To know you are not alone and someone understands is priceless.
As far as health? Many original members were not able to have access to this kind of information years ago that would have helped them and many became chronically ill and disabled, with too many dying from lack of information and supportive help.
What is encouraging for those who are not going to recover due to the extensive damage done is to see people come and go here, and return to their "normal lives" after getting help at LymeNet.
And LymeNet has a zillion success stories. It is wonderful.
Posted by kam (Member # 3410) on :
1. Why I came to lymenet.
I don't recall. when I first came down sick Lyme, MS, Myasthenia Gravis, Parkinsons and many other labels were thrown at me.
So, I started doing a search on each condition.
I assume that lymenet came up on my search engines. This was back in 2002. At that time, there was not as many web sites as there are now.
2. How LN helped.
It has helped keep me sane.
It helped when I was delivered boxes of bicillin shots that were too hot to touch.
I learned that bacillin was to be kept cold via LN so was able to contact the company and get things taken care of.
I also learned how to give myself a shot of bicilln via LN. I had gone to several local docs who refused to teach me or help me in any way.
There are many other ways LN has helped. This are just some examples.
Since my reading skills are very limited now, I am not able to take in as much info as I would like.
3. I recently was referred to a primary doc who will help with treatment as long as I have a lyme specialist to guide her.
I came down sick in 2001. DX and started treatment in 2003 until 2005.
Moved out of state in 2005 and due to health and finances not able to get the help needed.
Did what I could with what I had. Very low functioning most days but better than I was.
Hoping things will turn around in 2012. Getting medical needs is still going to be an obstacle.
Use power chair to get around but limited on how long I can be in chair. Limited on most things. Lots of flat on my back, quiet time.
![[lol]](graemlins/lol.gif)