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Anne17 Posts: 140
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 Hello everyone. I first came on this site about 3 years ago when I was diagnosed with Lyme by an LLMD. I was treated on and off for a few years and feeling a lot better. I had and still do have a lot of nuro and psychological symptoms. My question is about symptoms coming back, and can so called early symptoms return when Lyme is chronic? For example: swollen lymph nodes flu-like symptoms fatigue. My other main concern is the anxiety and almost constant thoughts about death and dying, and heart palpitations. Are these thoughts a part of the disease, or is this just going to be in my head forever? I don't think it should be normal to feel this way and be scared to be alone every day. Thanks for any help you can give! I am trying to find a new doctor a.s.a.p. |
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bbl2011 Posts: 167
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Were you ever treated for co-infections at all? Also have you had any physical or emotional trauma lately? That can bring on old systems for a bit. I am not a doctor, nor do I play one on TV. All comments are based on my personal experience or opinion.
* Had a band 23 on Western Blot thru LabCorp 2012
* Bands 39 and 41 thru Clongen Labs 2012
* My Lyme ID test ALL positive thru Neuroscience.
* Have been infected for possibly 10 years
* CD57 60
* My symptoms have all been cognitive (neurolyme), but I have always seemingly stayed functional (even if it didn't feel like that on the inside!).
http://ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf
* Have not started treatment yet (as of 4/2012)
* Blessed that the only pain is in my right knee joint, occasionally left.
*I always wonder, how many ppl are walking around, with my type of Lyme infection, just being put on paxil... |
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Anne17 Posts: 140
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I'm not sure if I was treated for co-infections because I was diagnsed without a positive blood test. He tried me on many different medicines to see what worked.I want to get tested through Iginex when I can get the money together. I know that the thoughts about death started soon after both my grandparents died in the same week. It was the first funeral of someone close I had been to. I think it really messed me up. |
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ten1988 Posts: 518
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If you stop treatment too early or when your cd57 count is down, which is your natural killer cells, then you will most likely relapse in time. So yes ALL of your symptoms you previously had can come back. My concern is coinfections with lyme. There are many oppurtunistic pathogens that can arrise when the immune system is down and also many infections the tick may transmit WITH the lyme. Lyme is very stealthy and it evades the hosts immune system. The immune system becomes slowly compromised over time without the host really knowing it, and by the time they find out its too late. Bartonella and Babesia are two very common coinfections that can be hard to eradicate, and must be treated to their own extent along with the lyme. A couple symptoms you are having palpitations, and fear or thoughts about dying. I have these quite often and I am recently starting to treat bartonella with Rifampin. I think bartonella may cause a lot of psychological abnormalities if left untreated, but these changes will most likely go away with treatment. I have these symptoms too so you arent alone. To fully get better you must educate yourself beyond what you know now. Learn what to eat. Learn what meds do what to what infections. Ask as many questions as you can. Switch LLMDs if you have to. Mine is great so far. Get a blood test and check all bloodwork so you know if you need any supplements which im sure you do, such as thyroid, testosterone, cd57, electrolytes, liver function, kidney function, coinfections, vitamin d. Post edited by: ten1988, at: 04/14/2012 02:37 PM Lyme Igenex Test Results:
Western Blot IgM; Positive; Bands 31 (+), 41 (+),45 (IND), 66 (+)
Western Blot IgG; Positive; Bands 31 (IND), 34 (+), 41 (++), 83 (+)
**I am not a doctor and my advice is purely my own opinion which shall be regarded as such!** |
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WiscLamLymie Posts: 1325
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Definitely check for co-infections. It sounds like you could have Bartonella or Babesia. Take a look at these symptoms and let me know if either of these sounds like you. (a lot of times, untreated co-infx are what is at the root of not getting over lyme.) Babesia: - Sleep apnea- Poor blood sugar regulation - Poor cortisol regulation (adrenal fatigue) - Symptoms improve with skipping meals or low carb/low calorie diet - Mid-afternoon fatigue - Nighttime energy increase (second wind) - Insomnia - Lack of Stage 4 deep sleep - Unrefreshing sleep - Hip pain - Neck pain - Mid-back pain - Spine pain - Numb extremities - Heart palpitations - Heart valve changes (reverse with treatment) - Cherry angiomas on skin - Brain fog - Apathy - Facial tremors/twitching - Feeling of phlegm in throat - Ear fullness chills, sweats, headache, myalgia, or arthralgia fever, anemia, or thrombocytopenia. ----------- OR ----------- Bartonella: stiff, painful neck, cracking neck fever fatigue headache poor appetite unusual, streaked rash (like stretch marks) swollen glands are typical, especially around the head, neck and arms. gastritis lower abdominal pain bladder pain sore soles tender subcutaneous nodules along the extremities Lymph nodes may be enlarged and the throat can be sore. Was diagnosed with Autonomic Disorder, POTS, Interstitial Cystitis, and Fibromyalgia. True story is I have late stage Lyme which has caused these things. Just began the fight in October 2011 (have been full-blown Lyme since Sept. 5, 2010), and WILL be victorious! Positive bands: IgG 41 and 60; IgM 23 and 41. CDC positive!
Not a doctor, not anyone of any legal standing... just someone on the search.
(Translation: Please do not take anything I say as medical advice. Always see your doctor when needing medical advice.) |
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kimomile Posts: 338
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It sounds like Babesia to me. I would definitely go back and inquire. If they didn't treat you for co infections, they really should. I've been told that most people with Lyme have co infections. |
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waxby  Posts: 4112
VIP Member
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~~~Hello Anne! ~~~Yes, find a new LLDr! ~ Please click to go here for information and support … ~ http://www.mdjunction.com/mem/117464 ``` ~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell ``` ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell |
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Bettyg Posts: 26491
VIP Member
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anne,please post in LLMD REQUEST FORUM, copy/paste this direct link there but pleasestate in subject line: adult, or under 21; i need your age there, largest city/state where you live. then i'll send you names. other members may join in and send you names also. so it's important to post in special llmd request forum. YOU'VE SUFFERED MAJOR TRAUMA/LOSS... the DOUBLE LOSS OF BOTH GRANDPARENTS IN THE SAME WEEK! this hits our bodies hard and you are going thru 2-4+ MORE stress due to your illness and losing your FIRST loved ones which is always the worst. you have not had time to grieve for one let more the 2nd one a few days later. hospice offers BERIEVEMENT CLASSES FREE in my state of iowa, check into that where you live ok. it's 6 wks. of 2 hr. sessions going thru all your emotions. it's helped me on 3 different loved ones. best wishes, hugs/prayers, bettyg, leader BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader
NOTE: I DO "NOT" USE CHAT thanks!
**************************************
NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)
http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-
Any information provided should not be used to take the place of advice from your personal physician or other professional.
Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.
43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more. |
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Caldonia  Posts: 143
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Bumping ... I have been in remission for two years. Then in December I got a puppy. A few days later, my dad died. Four weeks later, my sister died (my only sibling). That the was psychological stress. The puppy yanked my arm and caused either tendonitis, bursitis or a small rotator cuff tear - doc isn't sure, since I refused an MRI. What we know is, it caused PAIN! I went to PT for almost four months and have little progress. There's the physical stress. I realized I could not handle the pup and gave him to the family that has his sister. He's fine, I'm grieving. So, all of that started a slew of symptoms. My jaw started hurting around the time of the deaths and upon being xrayed, doc found that the disc on the left is gone. I now have arthritis and need a splint. Eating is dicey and I can't chew anything crunchy or hard. My hands are experiencing numbness and I'm a bit more tired. I had a CD-57 test done on Monday, but don't have the results back yet. I think my body/mind just had way too much, so here I sit, feeling not quite right. And wishing I had a puppy. And yes, I have thoughts of death and dying every day. It seems so much more preferable to this disintegration. Post edited by: Caldonia, at: 06/15/2012 01:18 PM |
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waxby Posts: 4112
VIP Member
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~~ Hello Sally ol' friend! ~~ Life IS difficult! Sorry! ``` ~ from my straight jacket ~ out on a limb ~ lookin like a cocoon ~ hangin by a thread ~ waitin for a butterfly ~ under the moon ~ Lovey-Dovey ~ Mitchell ``` ~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell |
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"I have suffered from depression most of my life, but had some long, non-depressed times. The last 16 years have been an on-going, constantly worsening nightmare for me medically, socially and with my family. 11/2008 to the present has been the worst time in my life, and new things just keep piling up. During that time I’ve gone from being mostly homebound to being totally homebound due to the errors of about 2 dozen doctors who overmedicated me so badly that I came home w/ 4 conditions I didn’t go in with. I spent months wanting to die, and finding MDJ may well have saved my life. It’s one of the worst feelings to know that nobody on earth needs you for anything; but now that I’ve been a group leader for awhile, there are people here who need me. Thanks MDJ." (Sylvia4648)
