Not sure Who I am Anymore...ramblings

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Regular Member

Date Joined Feb 2009
Total Posts : 214
   Posted 5/7/2009 3:34 PM (GMT -6)

I am not fully sure who I am any more. This could be Lyme talking or it could be me, recovering from a lifetime of doing everything for everyone else. Lyme could be unleashing the real me. The independent self-indulgent-pleasure-seeking-don’t-give-a-darn –about-anyone-else-me.

I have been sick and not required to do anything for so many months that I can no longer discern duty from desire. From rest and sloth, from greedy desires to stay in bed and eat bonbons or self-discovery at the age of 52.

I have been so very good. I have raised 6 children, married twice, cleaned and lived in dozens of homes, cooked millions of meals, with endless pots of macaroni and rice pilaf, watched hundreds of soccer game in the mostly bitter cold northeast, picked up noisy carpools, listened to girlfriend’s infidelities, read books I didn’t’ really even like for book clubs I didn’t enjoy enough. I think that I am done. I hope and I pray that I am done. Done appeasing, applauding, and wondering. I am tired out. Maybe that’s why I got Lyme. Like all those self-helpers out there say, “You create what you need.” Or “you get what you deserve “You plant the seeds of your bounty”. ….or what ever the saying is for what I feel.

I am sick of swallowing pills and waiting to see how many hours until something arises- like nausea or headaches or crying jags. I am sick of moping and wondering when it will end; what I should be doing and why I am not doing things better, quicker, fuller, happier.

I am sick of driving to doctors and hoping for some new improved way of thinking, a clue about how my body is really doing. Is the battle being won, or am I at Waterloo, or the Battle of the Bulge? Is it the Revolutionary War or the Civil War or The War of the Worlds- that never really happened except to a few dopes who happened to listen to the radio at the wrong time. They didn’t’ hear the preamble, the warning that this was only a story, an amusement, or a test,…nothing but a test.

Isn’t that what it feels like after all? I mean I have a disease that doesn’t exist to most, that causes doctors to live in fear of losing their license to treat you. That people don’t get. A disease that has countless infections that don’t test positive. A disease where if you test positive it is a good sign because at least you are mounting a response, unlike the unlucky f..ers who just feel like sh..t and don’t test positive to anything and are told to take more Celexa, or Ambilfy.

I went to a conference with a Lyme expert and he said if you had a science fiction movie disease it would be Lyme. It (Lyme) can do anything. It can travel through tissues faster than blood, it could go anywhere- do anything. Make you numb, give you toothaches, swell your joints and then just as rapidly, unswell them. It can make you think you are unlovable, cloud the smartest brain and ring eardrums while you sleep. It can make you cry in the middle of the night when you least expect tears. He said that it(Lyme) can tease your immune system- stick its tongue out at your blood cells and then within seconds join its head to its toes and flip inside out so your white blood cells never even saw it. Even your cells are confused about what is happening around it. Am I infected or healthy? What is going on?

Add to this some germs that behave like malaria. Live happily inside your cells only to burst out, unannouced when it pleases. An unwelcome guest inside your brain. Named like a cute storybook character, Babesia. It sounds huggable and sweet, like the cartoon deer that lost its mother too young. Despite its sweet label , it gives you sweats and bone breaking chills and headaches that feel like you have entered a Bosch painting of Hell. It makes you dizzy and irritable. It makes you think of ways want to kill noisy children, machines that whine, or people who speak loudly. It makes you fell dizzy, like an unsettled boat- one minute you are about to fall in murky water.

Add to this a bacteria that sounds like an Italian pastry or a special pasta dish. The waiter would roll the words “Bartonella” off his tongue and it might sound tasty. It is perhaps the cleverest of all infections because it so very subtle. You and your doctor do not even think of testing for it. And why bother, as it is nearly impossible to test for, and even harder to treat effectively. It is so subtle it just makes you feel cranky and as if you woke up on the wrong side of the bed. A little sorry for yourself. It is indeed self-indulgent and slowly it whittles away at your self esteem and convinces you that in fact you are unlovable. It can make you believe every bully that you have internalized inside your brain. Every insult thrown at you as a child or a full blooded adult. Ahh, Bartonella perhaps the cruelest infection that give you stretch marks, burns your bones and toes.

Veteran Member

Date Joined Aug 2007
Total Posts : 4415
   Posted 5/7/2009 3:50 PM (GMT -6)   
How very well-said! Thank you for posting this - now I know I'm not the only one who feels the same way with the blah's about life, about having been off work for so long that I can't tell the difference between duty and desire, and all the rest of it.
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.

Regular Member

Date Joined Oct 2008
Total Posts : 222
   Posted 5/7/2009 4:06 PM (GMT -6)   
I am going to keep a copy of this. It is so perfectly said and described and I share it all!!... My goodness.
The parts about doing the duties all these years.. and being done.. and all the infections that each eat at you in various ways. And how well people do not understand.
My family and friends getting angry at me lately because I do not call them or answer my phone enough or email enough.. i try to explain.. but it does not matter. They can not imagine what i am gong through. When i say I am sick they think of a cold. They say lay there and watch movies and why can you call. What is wrong with your hands? They do not get it.. And I can not say the words near as well as you did..
That is an awesome way of expressing it all.
Thank you for that.. And also. i am so sorry you have to endure this or anyone has to..!!!! This is a horrid disease and a horrible way of life... and it eats me up every day... picking apart and picking at me just like you described..

Regular Member

Date Joined Nov 2008
Total Posts : 375
   Posted 5/7/2009 5:12 PM (GMT -6)   
Thank you for posting!

Veteran Member

Date Joined Sep 2008
Total Posts : 1120
   Posted 5/7/2009 5:44 PM (GMT -6)   
I have only enough energy to say "Wow." Could not have said it any better. Take care.  D

Veteran Member

Date Joined Aug 2005
Total Posts : 4459
   Posted 5/7/2009 6:58 PM (GMT -6)   
Hi pcpc,
You bring back old memories of when I was sick and I can relate to much of what you wrote (I am also 52).  I don't know how long you went undiagnosed, but in my case, 5 years was way too long for me and I felt so lost as I KNEW something was very wrong and after seeing too many doctors who couldn't give me a diagnosis I was filled with despair.
That's when I took matters into my own hands and did my own research only to find out all my symptoms matched those of lyme disease and ehrlichiosis.   
I must be a strange duck because when my blood work came back positive for lyme and ehrlichiosis, I was thrilled!  No kidding.   I think the worse part for me was not knowing what was wrong and once I did know, I fought hard to get better.  Most of my journey was trial and error, I kept trying different treatment protocols until I found the one that worked for me.
And wow, did I learn!  I remember when I first joined a lyme forum (not this one) and people talked about detoxing, I thought they were nuts.   But after a while my curiousity got the better of me and I started detoxing (and still do).  
So yes, I know that lost feeling..   I remember when I was a real workaholic and married where I would stay up past midnight cooking and cleaning only to get up at 6:00 in the morning every day to start the routine all over again.   
I thought getting infected was a message to me to slow down and learn to appreciate life (the aspects of life that were passing me by).  I learned about eating right (I used to eat so much junk food!).   I learned about exercising and how important that is and still is.  
So I feel for you.. 
I don't know what protocol you are on but I will say the same words I say to everyone, that after a certain amount of time whatever protocol you are on is not helping, then it's time to take a good look and see what else is out there.   I think some get caught up in their protocol when it's not helping them for whatever reasons. 
By the way, are you able to exercise?  That helps so much.
You take care of yourself, it does get better!

It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:

Veteran Member

Date Joined Jan 2009
Total Posts : 914
   Posted 5/7/2009 9:45 PM (GMT -6)   
What a great post! This accurately describes what most of us are going through and how we feel.

Veteran Member

Date Joined Apr 2009
Total Posts : 1304
   Posted 5/7/2009 10:10 PM (GMT -6)   
Uh oh....... That barrrrr (tongue roll) tonella description hits way too close to home!  smhair   CRAP!!   Is it really that difficult to test for/diagnose??
pcpc, WOW you're a great writer! You've got some real talent there, as well as insight!  And you're hitting too many nails on the head!  Idea: Write some more, collect and organize, and submit an article to a magazine. Make a few $$$ sharing your misery!  Something from Cosmo to Redbook to Woman's Day.  Add to the current uproar, ring some bells, connect to others who are suffering and wondering what the hell could be wrong w/ them!  Seriously!
And do we know enough yet about some commonalities mentioned in the responses?  That until Lyme we loved so hard and gave so much and busted our butts for so much of our lives??  Until I latched onto Lyme as a possible/ now probable diagnosis of WHAT THE HELL WAS WRONG WITH ME,  the only other possible solution I could come up with, was that I had pushed and drained myself for so many years, and I allowed my emotions regarding others to literally suck me dry, and then I just broke.

Veteran Member

Date Joined Mar 2009
Total Posts : 674
   Posted 5/7/2009 11:39 PM (GMT -6)   
pcpc You are very eloquent you should write us all a book for the deaf unlymed. To describe it for everyone who doesnt have it to understand, and for everyone who cannot express it to there family and friends. You are darling.
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. getting the Flow Cymetry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. she is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.

Veteran Member

Date Joined Mar 2009
Total Posts : 4717
   Posted 5/7/2009 11:56 PM (GMT -6)   

I just wanted to let you know that that was an awesome post. Everything you said is exactly how I feel. I don't know who I am anymore either. Sometimes, I look at myself in the mirror and think I am looking at a stranger. I am so different now. Things I used to enjoy, I can't tolerate anymore or don't find pleasure in. I used to keep myself up, even if I was staying home and I can't even do that anymore. I look like crap and feel like crap most of the time. I've lost friends and most people just don't understand what I'm going through. They think that just because I look okay that I feel okay. I wish some of those people could walk one day in my shoes. Just one day!! I used to be this fun loving, happy, always clowning around and making jokes person. Now, I am this angry, depressed, always tired and cranky shell of who knows. That's exactly what I feel like.....a shell of my formor self that is lost and that I will never get back.

I felt every single word you wrote. I know exactly how you feel. I read it to my husband and he had me send it to him. He's the only one that sees what I go through and takes up for me if anyone makes it seem like Lyme Disease is not that bad. I am thankful to have him because I would be alone. Im the type of person that gives my whole heart to people. I go out of my way to help others and I still do it while I'm sick. I just don't understand why I don't get the same thing back from others. This disease has made me realise how selfish people really are. I guess that's why I get so angry and upset. I go far and beyond for others and get crapped on. Life just sucks sometimes I guess.

Sorry to be so blah today everyone. I am not feeling good today and running fever on top of it all.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

Veteran Member

Date Joined Apr 2009
Total Posts : 1013
   Posted 5/8/2009 12:07 AM (GMT -6)   

may i ask if its ok to show your letter to the new station here when they come to intervue me for the lymes awerness pice?


Turquoise Sky
Regular Member

Date Joined Apr 2009
Total Posts : 250
   Posted 5/8/2009 8:54 PM (GMT -6)   
Since I have the PICC line and cannot work currently (at a nursing facility for the elderly), finally able to rest even though still not feeling rested, so can relate with you, but I have been rereading the book by Louise Hay, You Can Heal Your Life. It seems, according to her, that we even bring on tick bites, and all of the symptoms have an underlying reason, such as feeling we don't deserve to feel well, anger, guilt, fear, and the list goes on. I am not saying that dealing with these issues is the cure, but it seems I need to deal with these issues even though I thought I had. Not dealing with these issues, will keep me continuing the pattern of illness. Before Lyme, it was chronic sinusitis. I changed my diet, and took supplements and was doing really well. Now it's Lyme. I cannot speak for anyone else, but I feel this to be true for me.

Veteran Member

Date Joined Sep 2007
Total Posts : 2017
   Posted 5/9/2009 8:50 AM (GMT -6)   
pcpc - I usually have to skip long posts because I don't have the energy, comprehension, short-term memory, etc. to read them. But, when I started reading your post I could not stop. I want to print it out and take it with me to ALL of my doctor's offices. When they ask "How do you feel?", I'll just hand them a copy.

Thank you.
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", song

Regular Member

Date Joined Feb 2009
Total Posts : 214
   Posted 5/9/2009 11:45 AM (GMT -6)   
Veromia333- Thank you (and everyone else)- i am going to write a book, and if okay with you (Veromia) I plan to call it "To The Deaf Unlymed"! What a great title you gave me.

I will dedicate to us- all of us slugging through this illness- trying to make sense, get better and not kill too many people along the way. You guys are great- I hope i can do us some justice and hopefully get our voices heard!

Regular Member

Date Joined Mar 2009
Total Posts : 24
   Posted 5/14/2009 9:49 AM (GMT -6)   

pcpc:  WOW!  I feel just like the others did when they read your post!  Just like JELAINEP said, I'm printing a copy and taking it to every doctors appointment my sister has!  Your words ring truth, loud and clear!  That is exactly how my sister feels every day of her life, only then to hear criticism from doctors because she's depressed!  Her latest LLMD even said she was "blocking her own path to help"!  Well, I guess depression and sadness can do that to a certain degree, but when your sick and your body is battling a very serious invader, I'm not convinced that "thinking good thoughts" will cure you!!

Thank you for your very eloquent words!  Take care and God bless!

Veteran Member

Date Joined Jul 2007
Total Posts : 943
   Posted 5/14/2009 10:19 AM (GMT -6)   

DX. LYME  7 /03 -I believe I 've had it since 1985- 
oral doxi, amoxi 6 months. Have been bitten 2x since                  
Developed many chemical & food sensitivities& Allergies to many Suppliments
Swollen Burning tongue/lips
Hashimotos Thyroiditis
DX. Babsiosis 4/07 -Malerone 2 wks, Mepron & Azithromax 6 mos. 
Armour Thyroid
Probiotics are a MUST   
Almost died from 3 doses of Plaquanil 12/07
IV Rocephin began 12/4/07
Bactrim began 1/22/07
Stopped Rocephin 3/04/08
DX Micoplasma
Mepron, Azithrommax, Rafampin 5/29/08
Stopped Rifampin began Bactrim and zithro 6/2/08
stopped Mepron 7 22/08
switched from bactrim to levaquin and had bad reaction to levaquin
began Mepron again till Nov, then began Malerone
began Rifampin and Minocycline 9/08
modified cowden protocol 3/09
Outstare The Darkness--The Light Will Come!

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