posted
Hi. I was just diagnosed with neurological lyme disease and I was wondering if anyone out there can give me encouragement that I will get back to how I was. (after time, treatment, etc) I am undergoing a lot of tests now. I've had Lyme, undetected, for almost a year. We thought I had cancer, when I had to have a suspicious lympnode removed. I have had a constant low-grade fever for months and awful night sweats. BUT, my lyme has really adversely affected my cognitive ability. I show signs of dysphasia. My balance is all off and I have weak depth perception. Considering not driving at all, after I hit my boyfriend's truck with my new car this morning, pulling out of a spot I've been pulling out of for almost two years. I just sat in my car and cried. Here I am with a genius IQ and I am having difficulty forming sentences and I sometimes just stop speaking in the middle of my thought; with no recollection of what I was talking about. I don't remember what happened yesterday and my vision is starting to act up. Right now they have me on 200mg of Doxycycline Hyclate - my internist put me on that. However, the neurologist was discussing an IV and/or hemogloban shots or something - does anyone know what this is? Does anyone know how long I am going to be a LOT less intelligent than I know I am. Will I ever be back to who I was? Any info from someone who knows what I am going through, would be greatly appreciated! Thanks E
Posts: 9 | From Oakland, NJ | Registered: Jul 2007
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There are many LymeNet Flash members who will help you, support you, inform you and guide you so that you will be another of our Success Stories.
Hang in there,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Sorry to hear that, but welcome to the club (of which we did not want to be members!).
Just a quick note to say that your brain will come back with proper treatment by a lyme literate medical doctor, llmd! I had untreated lyme for several years, and had all of the symptoms that you describe. I have been taking antibiotics and other treatments for one year, and am much improved in terms of reading, writing, concentration, speech and mental functioning.
You will need a strong commitment to your health, and there are ups and downs in treatment. Read alot of lymenet, it has been an enormous gift in my recovery! Congratulations on getting on the road to better health.
Posts: 2557 | From home | Registered: Aug 2006
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posted
wow. thanks. i appreciate it. i will do just that. it's amazing to know that others know what i am going through and are here to help! i will try to do the same as I recover. have a great weekend! e
Posts: 9 | From Oakland, NJ | Registered: Jul 2007
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Here is some information that may help you: Lyme disease is known as the great imitator because it imitates so many other diseases and medical problems and this is sometimes confusing to the average medical doctor. Also, the tests for Lyme disease are unreliable and many people who actually had Lyme disease received false negatives on tests that are currently available for Lyme however a positive test should be taken seriously as false positives are rare.
A rash, sometimes described as a bulls eye but the rash can take on any shape, occurring within days or weeks of a bite by an infected deer tick is a positive symptom of Lyme disease. The rash occurs in approximately 50% of the people who get Lyme disease. Anyone who has been bitten by a tick or who develops symptoms of Lyme disease should be concerned!!!
The best diagnosis is done by a Lyme Literate Medical Doctor - LLMD. This is a doctor who is highly experienced in the diagnosis and treatment of Lyme disease.
If you are looking for Lyme Literate Medical Doctors - LLMD's, I suggest you do the following: For Online Doctor Referrals, please click on the following URL for the Lyme Disease Association Doctor Referral page: http://www.lymediseaseassociation.org/Doctor_Referrals.html
You may also locate a LLMD in your area by registering on the LymeNet Flash http://flash.lymenet.org and posting in the Seeking a Doctor forum.
Much information about Lyme and other tick borne diseases is available on LymeNet at: http://www.lymenet.org
If you need to know more about Lyme disease I recommend the following: http://tinyurl.com/25uj86 Note: This is the "LymeNet Guide to Lyme Disease". This document will give you a good overview of Lyme disease, the symptoms and treatment recommendations.
If you need additional information, click on the "On-Line Library" topic on the left menu bar. You can find a complete and very comprehensive set of Lyme symptoms, testing, diagnosis and treatment information at: http://www.ilads.org/burrascano_0905.html Note: This is Dr. Burrascano's "Diagnostic Hints and Treatment Guidelines for Lyme and Other Tick Borne Illnesses"
You've now joined the LymeNet Flash http://flash.lymenet.org Post all your questions here. The LymeNet Flash has over 9000 users, most are Lyme disease victims, who are very knowledgeable, have experience in how to deal with this disease, can provide you a wealth of information and will help you. My wife and I have worked with and supported the LymeNet organization for 11+ years.
My daughter had Lyme disease for over 10 years before she was correctly diagnosed and began treatment. She has regained her health and is symptom free. Her story is at: http://www.angelfire.com/nj/lorib
Hopefully, some day soon, we'll beat this disease. Good luck,
-------------------- Lou B Posts: 2200 | From Mount Hope, New Jersey, USA | Registered: Oct 2000
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Hi, contessa!
I wanted to welcome you to Lymenet and also share my neuro experiences with you.
For me, neuro symptoms were among the last to surface, but when they did, they came with a vengeance. I lost short-term memory almost completely; experienced a lot of sensory distortion; I stuttered constantly; had horrible numbness on the right side of my body. I could no longer process sequential thoughts or ideas...in fact, all my processing skills were severely compromised. I would get disoriented and lost, even in my own neighborhood.
Really troubling for me was the fact that I lost my ability to form words on the page (I've been a professional writer for 30 years). I would intend to write the word "dumb" but instead would write something like "thumb" -- similar but totally different. I would leave words out of sentences and be unable to spot it.
After being on abx for two years, all those symptoms have improved markedly and some have disappeared entirely. I feel like my cognitive abilities are now at about 80% -- enough for me to be back at work, fulltime, as a writer.
I practice constantly, playing word games online, testing my memory skills.
I also have full faith that with continued antibiotics and supplements, these things will continue to improve.
I think it's great that you've got a dx (took me 9 years to find out what was wrong) and that you've started treatment.
Stay hopeful; that alone can go a long way in your healing!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lou4656
Frequent Contributor (1K+ posts)
Member # 10300
posted
Wow! Your story sounds like it could have been written by me.
Seven months on Minocycline -- and I am nearly symptom free. The s-l-o-w brain was the last thing to return to normal, but I had considerable improvement after 3 months.
I absolutely understand how you are feeling. I have been there. Keep your hopes up, try to accept what is . . . and enjoy the ride to recovery the best that you can.
-------------------- LouLou Posts: 1276 | From maryland | Registered: Oct 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Hi there,
I hope you have a good llmd instead of a duck to test you for co-infections. Many times people only treat the lyme and not the nasty co-infections that keep them sick.
Good luck.
Posts: 1603 | From ny | Registered: Aug 2006
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
Contessa-
good luck on your road back to normality.
as any good llmd would tell you, the sooner you begin serious and appropriate treatment, the better your odds are of making a full or nearly full recovery.
the path back may or may not be as straightforward as you anticipate.. i hope yours is smooth, but if it is not, you know where to come to have your questions and concerns addressed.
ps-- crashing into cars, including cars parked on my street- a first fo rme in 30 years of driving- was one of my first signs that something was seriously amiss. and genius IQ? i have that too, whatever it means, and what i;ve found is that while a lot of those gifts have been completely erased, others have arisen, perhaps in compensation. be kind to yourself. you are more thanyou have likely imagined before.....
best of luck- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Virtually all lyme is neurological. You are by no means alone. You need to seek the advice of a LLMD. Your PCP or non LL neurologist will most likely undertreat you.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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I too have a lot of the neuro symptoms. Mine are anxiety, brain fog, and headache. Mine have improved very slowly (over a 3 month period). At first I couldn't see well to focus, that's better. I also had trouble with my depth perception, but that's much better too. Now I have headaches (though less serious) and some sustained fog, that on occassion has completely lifted. I've been treated for a month, three months since the beginning of my symptoms, and 7 months since my tick bite without a rash occurred.
Keep your head up. It's been really frustrating for me to be in a fog. REally, really, really frustrating. I'm a health professional (gee, can you guess which field?) so, like you, it's really important to have all of my faculties to help people.
It'll come. I guess that it's unpredicted as to how long until the fog lifts though.
Keep posting, and tell us of your progress. We're all in this together.
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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Cobweb
Unregistered
posted
I was diagnosed with neuroboriolisis and encephalitis-but don't try to google those two words because I think I spelled them wrong.
Anyway-your symptoms all sound very familiar to me. I remember the frightening day I was leading circle time in our preschool-reading a board book to the kids-and I couldn't figure out which way to turn the pages.
I made some progress on orals, but really saw improvemnet on IV. Even my doctor commented "it looks like somebody is home now"
Not to overwhelm myself, I bought a couple of puzzles yesterday-50 pieces each. I used to love jigsaw puzzles-I'm starting back with baby steps.
I used to homeschool. I had undiagnosed Chronic Lyme and Babs co.infx. But there came a point when I couldn't stay awake during spelling tests that I was giving or do math problems with my 5th grader! (BTW, I graduated from a "competitive"college with honors.)
Then the short term memory disapeared, I couldn't remember the names of everyday objects, couldn't remember what I was talking about or lost words, couldn't spell (still having difficulties...have to be careful), and couldn't do any critical thinking.
Could no longer carry on anything that came close to intelligent conversation, read, etc. And all the other things you discribed.
I've been on abx for 6wks to attack the Babs first, but I have seen a little improvement. Not enough to feel like I could hold down a job or teach again...but I am praying that eventually it will ALL come back.
Some days will be better than others. HANG IN. It is a humbling experience. I think I understand what Alzheimers (sp?) patients feel like before they don't realize there is anything wrong anymore.
-------------------- When you reach your "wits-end" remember this: "Peace I leave with you, my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Posts: 397 | From Loudoun County Virginia | Registered: Mar 2007
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posted
Ok. So, I got my brain MRI and it was normal. They did extensive neurological tests and found a neuropothy.
So far, everything else has come back normal. I have to go for a brain spect test next.
I am waiting for more blood work to come back which my endochronologist ordered.
I've been very anxious; moreso anxiety ridden. I know this goes without saying.
What makes things worse is the lack of knowledge most people have about the disease; also the lack of compassion which can sometimes go hand in hand.
I have asked a friend, whose sister-in-law is a producer for the Oprah show to admantly push a show on Lyme. Fingers crossed, it will happen and millions will soon become aware of something none of us ever wanted to know anything about.
Much love!
Posts: 9 | From Oakland, NJ | Registered: Jul 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Glad your MRI was good. However, don't be surprised if your SPECT scan shows areas of poor perfusion -- a hallmark of lyme. The good news -- this is almost always reversible!
I do have a concern if you do not have an LLMD.
You really should find one and make an appointment.
The doxy is good but you likely need more of it to be helping. As mentioned, coinfections are more often the case than not, and they rarely are mentioned by non-LLMD's, or else trivialized. While I'm encouraged you're getting an IV, it may not be for long enough. It should be used concurrent with a cyst-busting drug like Flagyl or Tinidazole to eradicate cystic b. burgdorferi.
If you're not all better in 30 days your present doc is likely to proclaim you have "post lyme syndrome" and stop further treatment, despite reams of evidence that lyme can and frequently does persist.
Do see an LLMD. And come here often!
Hugs,
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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posted
Looks like you're getting some good assistance here. I'm responding to your statement that your vision is starting to act up.
My eyes have had muscle pain, blurred focus and light sensitivity.
I've been able to successfully treat those symptoms by drinking mangosteen juice, an anti-inflammatory juice made from mangosteen, a tropical fruit.
When I tried it, within one hour, eye pain and blurred focus stopped. Within 24 hours, the light sensitivity went way down.
There are lots of companies that offer it, at healthfood stores, online and a strong multi-level marketed one called Xngo.
The version I drink is called Ultra mangosteen. It has a juice blend plus 70 minerals and vitamins added to it from the Utah seabeds. I get it cheapest from Vitacost, online.
If you try some mangosteen juice, go slowly and drink a lot of water, as it can be rather powerful.
Posts: 13171 | From San Francisco | Registered: May 2006
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I have asked a friend, whose sister-in-law is a producer for the Oprah show to admantly push a show on Lyme. Fingers crossed, it will happen and millions will soon become aware of something none of us ever wanted to know anything about.
Hi -- Thank you for your efforts to help get a Lyme show with Oprah. Are you aware that we are asking Oprah to do a show on Lyme? Stories are being posted at http://boards.oprah.com/WebX/.f161b7a/0 -- very compelling stories, over 150 at this point.
Posts: 13171 | From San Francisco | Registered: May 2006
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bettyg
Unregistered
posted
Robin, glad you caught that statement since I coud NOT read her 1st post since it was solid block text with no paragrahs for me, a neuro lymie of 37.5 years!
i was just reading some of the other comments though.
contessa, please read the link robin pointed out to you, and give that to your inside oprah producer friend! WE THANK AND LOVE YOU FOR PUSHING LYME SHOWS.
with what there is going on w/lyme, we need 2-3 shows to explain all the sides of it!
would be great for Andy Wilson, UNKER OUR SKIN, lyme documentary director, to promote it and also to finish up FUNDRAISING so it can be shown in theaters nationwide!
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posted
Welcome Contessa...I'm so sorry to hear that you are in such bad shape. We have ALL been where u are now.
What shocked me most when I 1st got lyme & co-infections was the depth of WRONG information given by the general media, the general practioners, etc.
I was completely shocked by the fact that to get well meant traveling great distances to see an LLMD. I remember crying to my sister on the phone - I don't live in a third world country - I live in America! How can this be??? Sadly, not much has changed, but the tide is slowly turning.
It can be overwhelming, to deal w/ the scope of this when your so very sick. Does it get better - yes...Will it be easy - no.
The beginning of treatment is the worst. It is normal for whatever symptoms u had prior to being diagnosed to get extremely exergerated. (sorry on the spelling) This will pass eventually w/ abx.
Don't look for improvement on a week to week basis, but rather on a season to season basis to start, then it will be more on a month to month basis.
I remember not being able to find the dog food isle in Wal-Mart - something I buy all the time for my 150lb eating machine.
My mother in law had altzheimers - and I remember telling my husband I knew how Mom felt staggering on her words, or not being able to find them.
Neuro lyme most always at somepoint causes crying jags. Cry a river when u need to & know that this too will pass with treatment.
Only those that have been thru it truly know what your going thru. You'll find us here - usually at the strangest hours.
You are on the right path - getting diagnosed is a big 1st step - some don't get diag. for decades - so your luckier than some.
Find an LLMD - If you have Lyme, you probably also have some co-infections.
Please do put the bug into your friend's ear w/ the Oprah connection - because we do live in America, and the word needs to get out that thousands of people are suffering this medical, insurance, and government debacle.
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I used to get lost driving around town, and did back into a couple of parked cars, and run red light by accident.
I stopped having friends because I couldn't complete a sentence so converation was pointless.
I can't remember much of the last four years. Now I am re-reading books to see what happens, and watching movies I think I may have seen before.
After about four months of treatment I got my mind back. I still get tired and have plenty of physical symptoms, but they are on their way out. I have had lyme for at least 20 years.
Please do listen to Michelle about treating agressively with good lyme doctor. You can heal this disease and be back to your old self, but it takes expert care and a long-term committment.
Before long, you'll be encouraging others due to your personal success.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
Contessa, If you are on antibiotics of any kind, you should be taking probiotics so the "good" bacteria in your gut stay plentiful. If you do a search on probiotics you'll find specific recommendations.
Also, be aware that the phrase "post-lyme syndrome" is not universally accepted. It implies that whatever symptoms you're left with after a "standard" course of antibiotics are due to something else, like stress. So doctors who use the phrase "post-lyme syndrome" don't do anything to treat it (except maybe give you a referral to a psychiatrist).
LLMD's disagree with this based not only on clinical experience, but also on research establishing chronic Lyme infection in humans and animals that have received a short course of antibiotic treatment. If you read through posts, you'll find that the experience of most on this board is that ongoing Lyme symptoms usually do respond to long-term treatment from an LLMD.
Of course everyone's entitled to their own opinion. But if I had listened to the doctor who thought ongoing symptoms were "post-lyme", I'd still be bedridden today. That's what gives me the motivation to come on here and share as much information as possible.
Getting it within a year's time isn't too bad, there are many here who went undiagnosed much longer and still got better with the help of an LLMD. So have hope, you can recover from this!
Posts: 621 | From US | Registered: Jun 2006
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quote:Originally posted by contessa420: Tell me more about probiotics and imbalance...
I don't know what either are.
as was said above, probiotics are a source of good bacteria to help replace what the ABX kill off.. antibiotics don't differentiate between good and bad bacteria so it helps to take probiotics daily, at least while taking antibiotics...
probiotics are somewhat hit or miss in terms of how effective they are in restoring the good bacteria and some people will attest to having more success with certain brands.. whichever brand you go with, I would recommend at least getting one that is refrigerated as that increases the chance the bacteria is actually alive when you take it...
you can also get probiotics in certain foods, yogurt being the most known and one of the easier ones to eat regularly as opposed to something like sauerkraut (which is probably counterproductive to eat anyway when treating candida/yeast since it is fermented)... I would recommend avoiding yogurts with any additives or filler ingredients like aspartame or sucralose though as these items can add to/cause neurological issues with long-term consumption..
I've gone through at least a number of the same things in terms of testing and doctors as you, having 2 brain MRIs and seeing a few neurologists and endocrinologists among other doctors from the end of college in 2002 through 2006... the neurological issues, namely headaches and cognitive processing are my worst symptoms with the physical symptoms secondary...
I've seen improvement in a number of areas from strict dieting, supplements, a regular sleep schedule, and physical activity over the past year and a half... I would recommend reading up and discussing dietary measures (for example, removing gluten/casein, a candida diet, removing any processed foods with ingredients such as MSG, aspartame, artificial colors, etc.) and taking supplements with any doctors who might be able to give feedback on this... of course, I don't know too many specifics for your situation, but I'm inclined to think at least certain dietary measures and supplements would be beneficial in your case...
I saw most of this improvement prior to getting diagnosed with lyme, which didn't happen until this April... I still have a ways to go but considering I've been sick for five plus years, I think I'd be a lot worse off and headed in the wrong direction had I not made these changes in the past 2 years...
I also was quite smart before lyme and whatnot started its effect on my mind (well, I guess the drinking and partying in college didn't help either), and while I'm still trying to consistently get back to being myself mentally, I do at times have my brain working right... which is assuring and lets me know I'm capable of reaching that point again and that the damage/interference isn't permanent..
also, why are you seeing an endo? you have blood sugar issues, thyroid issues, or something else?
Posts: 43 | From NJ | Registered: May 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by Nimzovich76: On the other hand I had another friend that contracted lyme and has been treated for at least 10 years and hasn't recover yet, I think in her case she developed the dreaded post-lyme syndrome.
Nimzovich, perhaps you need to do more reading? Some of the studies on bacterial persistence in spite of repeated rounds of treatment?
Contessa, normally the term "post lyme syndrome" is a term used only by ducks who simply can't comprehend someone not being better after a short course of antibiotics.
Knowledgeable LLMD's and researchers know better, and treat until a person is better.
Here's a little reading so you will know the term "post lyme syndrome" for the excuse it is!!
posted
I am seeing and endo because of the horific night sweats and low-grade fever. Also, nodes in thyroid which I just found out to be benign.
The only thing my blood has shown is high CO2 levels.
I just feel awful lately. I never had back pain, but I can barely stand. I think it's the Antibiotics.
I gave blood today for a C1 something or rather blood test, from my neurologist. He works with the LLMD I will be seeing - both work with my endo and my internist.
I see the internist on Thursday and Endo on Friday and LLMD next Tuesday.
Where do they hook up the IV if that is the direction I will be heading. Which, from what everyone has posted, makes me think I will be.
Also - has anyone elses relationships with their significant other been affected by this?
I have to break up with my bf because he is just NOT sympathetic to what is going on and I can't see being able to get through the next few years without support.
Posts: 9 | From Oakland, NJ | Registered: Jul 2007
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bettyg
Unregistered
posted
contessa, you'll find out here the majority of folks have had a DIVORCE/breakup with their live-ins due to lyme.
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posted
bettyg - are you serious?? how can people be SO callous?
it's not enough we have to deal with this, they have to make it worse!
Posts: 9 | From Oakland, NJ | Registered: Jul 2007
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Yes, lyme can be a serious stressor in a relationship! I have experienced that too with dh. But, there are several folks who post here because they are devoted to supporting their family member's health, so the opposite can be true also!
Posts: 2557 | From home | Registered: Aug 2006
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posted
see, that's great to read, as well. oh to live in a better place, mentally and physically.
Posts: 9 | From Oakland, NJ | Registered: Jul 2007
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That is one of the hardest things to deal with emotionally with Lyme.
I would say the best thing you can do is relax. Plan on it going away. Plan on laughing about it along the journy, because you are still smart, you just have brain farts and they can be pretty funny . Also, do not give up.
I personally think even though we are incapacitated right now, it does not mean we cant do things normal people do to improve memory and thought. I picked up a sedoku book, and have really come quite far, and yes i have days that are worse than others, and some that are better, but its a good way to mark improvement.
Remember, Neuro Lyme IS NOT YOU! Things will get better.
posted
contessa, yes, i'm very serious. i've read many of their tearful stories here in general support, etc.
i've been blessed with my DH going on 33 yrs. in Oct. he's NEVER known me well. my goal is to get into remission so he can get to know the REAL ME WITHOUT CHRONIC LYME!
he's been very supportive especially with all the hours i'm on lymenet weekly helping all of you in whatever capacity i'm capable of ... sending my newbie package of 60 pages; helping to find LLMDS, etc.
Bea Siebert is one of our most caring, knowledgeable spouses; she hasn't posted in going on 2 months. ANYONE HAVE BEA'S HOME NO. TO CHECK W/HER??? I'm concerned!!
i sent Bea a PM in the last 2-3 wks; NO ANSWER.
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posted
I started reading this thread because of my current bout of meningoencephalitis (I get it recurrently) -- it always comforts me to know that others have experienced the same thing, and I'm not losing my mind, except in the organic sense.
What made me respond, though, was the relationship issue :
I'm in the process of a divorce right now, due in part to my illness (there were other problems, too). My ex just couldn't be present for me in my suffering, and even mocked me for being weak, exaggerating, etc. -- accused me of not wanting to work (btw, I worked full time during all of this, but had NO energy for anything else, and barely survived it). He was embarrassed for his image when I had to walk on a cane, and made no point of hiding it.... I finally left the marriage.
Guess what? I'm much happier without him! It'll be a while before the damage from his cruelty begins to heal, but at least I don't face coming home to it every day.
I am now with the most loving and understanding person in all the world -- a friend who developed into more after I left the marriage --
He's ill too (MS diagnosis, but looking very positive for Bb) -- his symptoms are quite different from mine, so our experiences differ, but he is incredibly present for me when I need him, and his support is unending.
I can't tell you what a difference it makes to have a supportive partner -- like a blessing from heaven. Even alone, I'd be better off than with a husband who refused to understand....but having this kind of support really makes the whole thing much, much less awful.
As much as it hurts to leave a partner, it just isn't worth it to hang in there with someone who cannot or will not empathize and be supportive. If someone can't be there "in sickness and in health", then the relationship is missing what it takes to last in the long term. In the end, it does nearly as much damage as the disease itself.
God bless the spouses/partners who are there for those of us who are ill!!!!
-------------------- "Looks like freedom but it feels like death.. It's something in between, I guess"
Leonard Cohen, from the song "Closing Time" Posts: 822 | From California | Registered: Jan 2006
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