posted
I have to say that reading the article on "chronic lyme and other medically unexplained syndromes" made me feel Although I think it was 99% garbage, it struck some cord in me that said -- wait a minute, think...
I'm going to express some honest reservations I have here -- and I hope you all can help me figure this out, without getting or with me.
I have had positive lab results -- in Aug and Jan Igenex Western Blot positive by both Igenex and CDC standards for current infection, and that according to the lab show my Lyme is worse now than it was in August, which isn't surprising because the doc didn't tell me I had a positive test.
I was interested to hear from my (new) doc today, that according to the Igenex lab doc, one of my main markers (I think 41) can be cross-reactive to syphillis, herpes and Epstein-Bar Virus. So I'm going to be tested for those as well, to rule out those as the cause of the positive blot.
I also have low CD57 (natural killer cells), which is apparently some sort of marker for Lyme.
I've had chronic health problems for the last 14 years, which have resulted in a host of diagnoses: ptsd, depression, sleep disorder, fibromyalgia, migraine, and un explained joint pain that travels.
I know I'm not well -- but I do think that by reading posts here -- that I'm a lot better off than many of you, for which I am grateful. I can work -- though not full time -- I have my own business so pacing and rest can be part of my way. I don't actually make a living mind you, but I do work. This past year was a financial loss due to illness, but I kept my business open at least.
What worries me is two things.
One -- I'm afraid that years from now I'll still be taking antibiotics, that I'll have gotten no better, that maybe in some ways I'll have gotten sicker from the antibiotics.
I'm afraid of this because I've heard and read stories of people that are in that position -- still sick, still seeking treatment. I'm very worried about being chronically ill and chronically in medical treatment indefinitely. My doc says it will be 1-2 years of treatment and then some rehab work after that, as long as there are no co-infections. So I realize I'm in for a long stretch, but I'm not wanting to go down say, a five or ten year track on this thing.
My second concern is closely related, but different. I'm concerned about becomming identified with the disease.
When I first became very ill in '92, it was with post traumatic stress disorder and depression. I was in the psych hospital 3 months and then a day program for 3 years. It may have very well been compounded by Lyme, but who knows at this point in time?
So here on Lymenet I hope my "coming out" as a person who has psychiatric disability is acceptable here -- pscyh conditions are (in my opinion) far more stigmatized than Lyme (we can debate that some other time), so I know ya'll might not be comfortable. So whatever, there it is.See -- even one of your greemlins makes fun of pscyhiatric condtions
I was very very incapacitated. I lost everything -- my career, my home, my social network, and most of all my mind. I have a Cum Laude grad degree person - but honestly, at that time in my life I couldn't cross the street or grocery shop.
However, with a lot of hard work I recovered enough to build a life back together. I now have a career again (and my mind), a social network and a home, and an added feature -- a husband! I feel very fortunate, because most people who reach that level of pscyhiatric disability do not get this far.
What I learned from that process of recovery, was that initially I had to embrace the diagnoses, and in essence let go of what I had been. It had been stripped away from me anyway, and holding on was just too painful. Embracing my reality, as grim as it was and learning about it, learning how to work with it, connecting to other psychiatric labeled people, learning how to engage the medical system in a way that was helpful to me, were all critical to recovery.
But at some point I had to let go of the identity of being mentally ill in order to step forward in my recovery. I still take medication and I still use counseling and I still keep a monitor on my condition, and if I show signs of relapse, I take quick decisive action to take care of myself.
At any rate, this is the thinking that happened in my head after reading that article. Which by the way, I can see is inflamatory rhetoric, but... but... I gotta ask you all --
...has your experience with Lyme Disease affected who you think you are? Are you a Lymie? Will you always be one? Or are you someone who has Lyme Disease? Do you shift from being one to the other? Is there a progression? Is this something you've ever thought about?
I think part of my fear is of loosing what I gained. I don't want to loose my grounding in my life -- yet I feel that somedays I am just absorbed by Lyme. Mind you, I was really sick last year, I just didn't know why. So now that I know somedays it's all Lyme and very little of me, any where to be found. I worked too hard to get a life, and I don't want to go down the Lyme rabbit hole.
Can you understand me at all? Do we speak the same language?
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Karen,
When I get frightened about my illness I think the following thoughts.
1-If a police officer is shot, his/her first instinct is to go down because, after all, they have been shot. This can get them killed. They must push aside the thought "I've been shot" and keep fighting the one who shot them.
2-Lance Armstrong was faced with a cancer that should have killed him, but he got angry at that cancer and vowed to beat it. We all know Lance Armstrong has some pretty strong will.
3-I saw a show about beating cancer and one thing all survivors of "terminal" cancer have in common is their attitude. They get angry and determined to get well.
The mind is a powerful thing and what we believe really is what we achieve.
So, don't give in to a label of illness. Think of yourself as a well person winning against disease.
Every day I thank God for the healing he is bringing to me. Even on the days I really hurt. Sometimes I cry, but only to release the fear and despair. After that cry, I thank God for all the good in my life.
Hang in there and Hang out with the rest of us going through the storm.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Dear Karen,
what a thoughtful and eloquent statement. Honestly, I wish I could write more in response, but I am just recovering from a recent head injury myself (just what is needed with neuro-lyme!), and will keep this note short, it's about all I can do.
First, you should be getting/feeling better and better with treatment. I had untreated lyme for many years, and generally, with some episodic strong ups and downs, have been getting better and better over the last six months. I certainly wish you well with treatment.
Also, lyme causes psychiatric effects; there is alot of information here on that and you can do a search. Many folks write about their psych symptoms on lymenet and share experiences, more honestly than in many forums. We are here to support each other and there is no stigma there in discussing health conditions.
Take care and wishing you good health.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Wow-your post sure moved me! You certainly have had more than enough challenges already-I am glad you have come so far! Hang in there!
I did not have a positive WB, but had bite & symptoms this summer -did 3 month round of abx & praying it was a recent infection-
I did feel "all-consumed" with Lyme at first-needing to learn & read everything about this mysterious disease. Thankfully the urgency and anxious feeling is finally subsiding- think much of it was due to being symptomatic & herxes. Believe I needed to make a conscious decision NOT to let LD define us-keep living the life you've worked so hard to achieve! (plus I quickly found that NO one wants to talk about LD!)
You have the advantage of successfully regaining the right perspective for you before, you can do it again! Wishing you the best of luck with your treatment Sue
Posts: 249 | From finger lakes, ny | Registered: Jul 2006
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posted
i have been wrestling with this big worry myself, how to reconnect with who you really are, and see beyond all the diagnosis and diseases and see the real you, when the suffering is so so bad that it obscures all other parts of you. i get scared because all i know is my suffering, i have been sick for so many years that even though i hate being so so sick and disabled, thats all i know, i cant identify with who i was before i got sick and i feel like my pain and my disease is my security and part of my being since it is all i have known for so so long, if anyone can relate or offer some advice how to help see beyond the 24hr suffering and see the real you when you look in the mirror and not just the sickness, please please reply, thanks radha
Posts: 392 | From New York | Registered: Dec 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
The Magic Mountain by Thomas Mann is the best book I have read on this topic- it is a novel about tuberculosis patients. It is lovely.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
To any of you who are feeilng resonanting with the "lost in lyme" aspects, I wish for you and me and all others who feel a loss of "I" that we may be ourselves now and in the future.
Thank-you for the honesty of your replies.
I know part of it is that I've just got to surrender a little bit while I'm in the stage of absorbing the tremendous amount of information and ideas. It was really shocking (though I totally expected it) to hear from my doc that she thinks it will take 1-2 years and then some. That sort of information takes time to take in and digest.
I am a fighter, and I will fight. And I will try to come round to myself on a daily basis.
I wanted to share something from a buddhist nun I study with. She taught the "hollow body" meditation this past Sunday.
Basically, going into meditation, you first visualize your body as a whole, and gradually let the insides dissolve, so that you are like a balloon -- just a skin, full of light. And then let the skin become luminous like a hologram and dissolve as well, so that although there you there, you are totally non-physical in your identity.
I've also found the taking and giving meditation techniques very helpful in dealing with being sick. They are desribed in some of Pema Chodron's books.
This I felt was a great meditation for this condition, since the pain and fatigue make the being so heavy and present. I don't know if this will be useful to you, but it's offered on a take it or leave it basis.
May you be yourself,
Karen
Posts: 112 | From RI | Registered: Jan 2007
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Greatcod
Unregistered
posted
I am certain that that the ticks do not screen their victims for psychological conditions. If they did, there would be nobody left to bite.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I've often thought about the things you expressed so well.
I suppose I can wear many hats...They all describe me, but none can define me.
I am at various times: A Mom, sister, daughter, wife, Katrina survivor, Speech Pathologist, and most recently all of these things plus a person with Lyme disease.
I embraced my dx. I was so glad that someone found what was wrong with me (medically speaking)...
However, I decided not to let Lyme define me. I'm not a Lyme Mom, but a person who is a Mom and happens to have Lyme.
Knowledge is power. The more you know the better prepared you are to over come the obstacles. That is how I view Lyme.
It is just another mountain in my way, that for whatever reason, I have to climb.
Stay strong. Again, loved the post.
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Very well written and I certainly understand exactly what you are saying. I've been chipping away at this illness for over 7 years with traditional & alternative care, but only 7 months ago did I realize that total recovery wasn't possible until I dealt with the illness from my neck up. Emotional and mental stuff.
Even though I've had a great support system, some anti-depressants and alternative treatment along the way for my outlook on this illness. Something was missing.
I've had this inter-battle going on in my being. I started seeing a couselor and she has been a true Angel in my life. I haven't accepted, nor will I even expect that I will quit looking for the cure(s). So I'm a fighter. But reality is I'm ill, from whatever this evil thing is.
I'm now at peace with myself. Some days are great, some days not so great. I've educated myself enough that I feel I can control anything this illness throws at me.
I no longer feel guilty that I'm disabled. I thought who I was, was defined by my career and being a hard working woman. So I accept that I am ill but I live by my signature statement.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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bettyg
Unregistered
posted
karen, very eloquently written. I hope also that you will copy your link and put it in SUCCESS STORIES IN GENERAL as well.
you've come a long way, and you express yourself wonderfully!
i've got to be off internet in 10 minutes waiting for wellmark to call so this will be very brief for now.
mental illnesses are a result of lyme disease as well. if if you go to TREEPATROL'S NEWBIE LINKS in what i furnished you when you joined, look for the name ART DOUGHERTY!
he has info galore of links he put together of the 300 OTHER ILLNESSES mimicking lyme disease with pub med articles as well. he took one important one i went to all the time, but other links remain ... so please check it out as well.
I'm a lymie! glad to have the CORRECT name finally. Yes, I PLAN ON GETTING INTO REMISSION! later,
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posted
lol, greatcod on ticks screening us for psych conditions and not finding anyone left to bite!
I have noticed myself saying "we" for the years I have gone through this condition even without knowing what it was. As in "how are "we" doing today?" etc
Meaning, this condition, whatever it is, and me as I've known myself before I got socked with symptoms.
So I think of myself as a double person. One as the Lyme that's in me and how it affects all aspects of me and my life, which it has.
The other as the person I was and still continue to be, who isn't sick. That's the original me.
I have also had to psychologically work on the original person I was because of this disabling experience. I know my original self has changed as a result, because I now think differently from able-bodied people.
I now have to take my time in doing things and don't rush. I have gratitude for the little things in life, not just the big things.
I no longer hold onto so many "shoulds" about life; I've been forced to become more flexible about options. That one is still hard to do often.
I think my psychological changes may sound more like a senior experience!
Now, for those born with this condition or acquiring it at a very early age, I think it's important just to know you have as much right to be a person, who happens to have a health condition, as I do, having acquired it later in life.
Posts: 13116 | From San Francisco | Registered: May 2006
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I have Lyme, but Lyme doesn't have me. Does that make sense? While I can't work in the classroom right now, friends have pointed out that I still am a teacher in other ways than being in the classroom. I am still their friend. I still have the grace of God.
I will keep fighting to get better and try new healing techniques. I will get well. I have Lyme, but Lyme doesn't have me. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8890 | From Illinois | Registered: Aug 2004
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posted
I can sure relate. I was on antibiotics, really strong doses, for well over 2 years. That was 5 years ago, and I'm still on the way up!
I am also a tbi survivor from way back, and lost my spleen in that same injury, which complicated recovery from babesiosis, which I also got along with the lyme, tremendously.
So don't EVER lose hope! Grab onto any little improvement, and go for the next.
With diseases this nasty, a multi-prionged attack is helpful. LymeNet is a great place to find ideas for boosting immunity, weakening the lyme, and feeling better.
My crazy musichelped get me through it all, though perhaps this sort of thing might be more readily accessible to start...!
As for our experiences with diseases and other things affecting who we think we are, that goes without saying, doesn't it?
I wish you well, soon. DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
Good thoughts. Thanks for bringing this up.
For me my Lyme dx gave me hope. Before that I had a dx that had no hope for improvement. I didn't have a lot to look forward to, just the status quo, or getting worse, which I seemed to be doing.
Now I've been in treatment for about nine months and I'm doing better! My friends can tell it, I can tell it, and my LLMD can tell it. I'm about to switch abx to hit it from other angles.
I now talk about, "When I am able to do this, or that." Before I never thought I would be able to do so many things again in my life.
I've had Lyme for over 40 years and was only dx'd last spring. Yet, I am better already. I have a long way to go, but I can tell a difference, and that's so exciting for me.
I was hospitalized for "depression" for two weeks in 1997. I can now look back at it and see that it was actually Lyme Disease, not depression, and that's why I didn't improve on antidepressants, until I was put on one that helped me sleep.
I lost my teaching career to Lyme, but I am still able to reach out and teach people, just not kids in a classroom for 6-7 hours a day.
I also have home-based businesses, that haven't been too successful recently, but I look to the future and see them growing as I improve.
I do not define myself by my health problems. I am involved in my church and community and have friends of all ages, one of my mother's secrets to longevity (she lived to be 95).
Most importantly I have a positive outlook on life and see a bright future for myself.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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I appreciate your posts on this topic very much. I think your questions are very well thought out and reasonable. Unfortunately, I'm herxing right now and unable to respond to each of your eloquent points and questions so I'll write what I can.
The identity and Lyme question is one that strikes a chord with me. What stands out in my mind is when a dear friend said, "Denise, you are not your illness!" I felt hurt and misunderstood so some days later I asked her what she meant. She said she was still able to see me apart from Lyme disease. She is able to see something essential in me that is beyond everyday material concerns. I was deeply touched.
Through this illness and the special friends I've made in the Lyme community and those outside of the community who are open-minded enough to understand, I've come to understand myself in a new way and I have far more compassion for others at the same time I have better boundaries. It has also taxed my relationship with my husband especially since we have a 3.5 year old son who got Lyme from me. Life has been crazy! We are in therapy now and are becoming closer than I think we might have been had this illness not touched our lives.
As it seems you already know, we can discover gifts in adversity and Lyme is no exception to that.
Now, if I can just carve out some commitment for the mindfullness meditation I embraced as a way to cope with depression. Now that I know the depression to be caused by Lyme, I've lost the motivation. That and the business of being a mother and a Lyme patient (doc apptmts, insurance issues etc) has left me so busy that I shun 5 minute meditation since I can't fathom finding the time to sit for the usual 45. I use meds to help me through since I need what help I can get.
And lastly, be sure to take your questions to your LLMD. I think they are reasonable questions at any stage in this game. Asked with sincerity, I think they will serve you well.
Thank you again for your post, Denise
Posts: 261 | From San Mateo, CA | Registered: May 2005
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Karen, I give you immense credit for you strength and openness. I hate the label "mentally ill", becuase I think almost all of us at one time or another could "but for the grace of God" end up in a psych unit under the right set of circumstances, and it doesn't mean we aren't normal, or that we are crazy, or anything. I think more than half the world experiences anxiety and depression, and PTSD is a PHYSIOLOGICAL response by your body to extreme trauma. You have no control over it. I have had some level of anxiety and depression my whole life, and have taken antidepressants for years....and guess what???? I"m a well known therapist with a highly successful practice. I don't share that with too many people, and it's not because I'm embarrased about it at all, but that I worry they won't think of me as "strong" enough or something to help them. Anyway, with the Lyme added on, all in all I think I'm pretty damaged goods, but then again I do a damned good job at what I do when I am well....and now that is most of the time (after 2 1/2 years of straight ABX treatment.) Labels are just fictitious non entities, we are who we are, and those of us who face it and address it are generally a heck of a lot better off than those who don't.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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liz28
Unregistered
posted
I was physically disabled with Lyme, babesia, and bartonella for six years.
Two out of three diseases were cured within three months once I started the right treatment. The third one would have been cured in six months if I'd been on the right antibiotics soon enough.
As it is, I am almost symptom-free, and take antibiotics daily. The only real remaining symptoms are fatigue (combated with provigil, CoQ10 and Celebrex), insomnia (melatonin and kefir), and candida (kefir).
My opinion on this is simple, clear-cut and non-negotiable. Every time you have a negative thought pop into your mind about yourself, get rid of it. Use affirmations.
Never say one negative word about yourself. It does not matter if you have twenty personalities. Treat them all with absolute love and respect.
If anyone says a mean word about you, or anything you have ever done, walk away in a huff. If anyone treats you as a smidgeon less valuable than the Duchess of York, replace them. It doesn't matter if the word Harvard is stenciled on their foreheads.
If anyone ties your Lyme symptoms to being female or having an abundance of emotions, hormones, mood swings, or deep-seated family issues, be sure to say the word "multimillion-dollar lawsuit" on your way out the door. That is not a joke. They can get sued into Siberia for that.
As far as your emotional state is concerned, treat it the same way you would the feelings you would have if you had the flu. It had nothing to do with you. It was just a bad case of extended flu. Would a flu survivor go on and on about coming out as a damaged soul? No, that person would be on the warpath.
Everyone enjoys different survivor books. My two favorites are:
The Gulag Archipelago, by Aleksandr I. Solzhenitsyn
Man's Search for Meaning, by Viktor Frankl
They aren't cheery reading, but they will demonstrate the appropriate mindset for overcoming completely preventable tragedy.
Again, you are a person who had extended, curable flu. If people don't like it, they can donate to a health charity. But they don't get to say anything mean about you.
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Karen, you are in good company here. My daughter started her journey with migraines, depression/anxiety, night terrors, OCD, etc.
We found a wonderful psychiatrist who got her balanced. Life was good...for a while
When she started getting sick in other areas of her body, we were sent on a wild goose chase to many specialists, only to come back to our PCP, who told Anna to go see her psychiatrist.
That was the low point, but the point that caused me to get searching. A lyme co-infection was not anywhere near my guess.
She is still on psyche meds, but we now know that someday she may not be as she gets well. If she is, well, that's no different than having to take insulin.
Take care...lyme affects every system of the body, and the brain is all part of it. You will find how much it IS involved in this disease.
Please read back posts, and learn. This is a never ending source of wisdom.
posted
The better I feel the less consumed I am with "getting well" and the less fear I feel.
The better I get the more I get out of survival mode and start to feel well in my own skin mentally and physically.
When I was really ill I thought that I would never recover from the trauma of going through the illness but the body and brain quickly forget when not under constant stress and go back to normal stasis.
But I will never forget what it feels like to be treated badly by the medical system and to be belittled. I am very angry about the way we are treated and the better I feel the more bitter and angry I am. I will turn these feelings into constructive change for all lyme patients and chronically ill patients for the rest of my life. This is my life mission.
Am I worried about relapsing? Heck ya but I made it this far and I'll just figure it out as I go along.
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