posted
Hi I'm new to the site, (sooo relieved) to have a support group...just reading everyone's stories has helped tremendously in not feeling alone and semi crazy.
My lyme-story is as follows: infected july 09, diagnosed 2nd stage lyme in Aug.09,2 rounds of oral doxy thru August and September...I had no idea really what lyme was all about, figured I take the antibiotics and be done with it.
Symptoms lingered but I downplayed them to myself. Numbness and tingling in my legs, shooting pains in my head, back numbness, etc...fast forward to about 6 months ago.
I just think I over did it over the holidays, staying up all night getting things ready, trying to be a functional hostess thru obligatory family events, etc and then just like that I tanked.
for the last 6 months, I've woken up ever morning in pain. Sometimes I could barely move, the comforter would be just too damned heavy. But I have a four year old.
I don't want him to see me suffer, my husband (a chiropractor, and admittedly my saving grace, as he's been able to go toe to toe with various drs around this) who's had my back for the last almost 2 yrs is at his wits end watching me "manage" it.
ANYWAYS, My primary physician sent me to an infected disease specialist, who sent me to a neurologist. All 3 ran the same tests, which show lyme but inconclusively. After kicking and screaming (internally) I had a lumbar puncture, (showed clear); yesterday I had an MRI,(and an allergic reaction to the contrast dye).
The neurologist says it's not neurological that it's not lyme. He says it's a chronic migraine disorder excerbated by the lyme.
In the last 2 months I've been prescribed morphine, hydrocodone, gambapentin (which is neurotin), and now amitriptyline...i've had to wean off the neurotin (bad side effects for me)weaning off the morphine after I went into some kind of morphine toxicity.
None of these treat the CAUSE, though the amitriptyline has changed the quality of my headaches, I still feel the other very lyme-y symptoms. I honestly thought I would just get a pic-line put in and it would be over again, but that seems to be off the table now.
Even my husband wants to believe the neurologist now, so I feel like I'm losing my strongest ally. I don't want to emote or complain anymore to my family, I feel like a broken record.
I've completely lost my gameface, I had to take a leave from work, and am staying home now with our son, which I'm grateful to have as an option, but it's hard because I get winded so quickly. I can't multitask, I can't really keep on with the same complaints to friends.
My inability to cope often competes with complete overwhelm...over the littlest things. I just feel...lost. I'm praying the the MRI results definitively show SOMETHING. I think my in-laws worry that I'm just crazy, and it's scary to think that they might be right:/
Ugh. I'm sorry.I just sort of let myself type...I'm crying with my still semi swollen face, and having a pity party for myself;) My family is in CA, I'm in NY, and I don't really have anyone to talk to about this. If you've read this far, thank you. I didn't realize I needed to vent, and to think this is my nutshell version, LOL.
I just want my life back. Since lyme, I've been in limbo. Many Blessings. M.
[ 03-31-2011, 06:02 PM: Message edited by: Lymetoo ]
Posts: 8 | From syracuse,new york | Registered: Mar 2011
| IP: Logged |
just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Welcome as I see its your first post!! Your to be commended to find the BEST lyme support on the net bar none!!
We seperate the block text with white space every line or two.
Its easier than you think to do. Type a sentence or couple lines and hit enter twice.
It becomes habit soon.
Some people with tick borne problems of vision cant read well all run together.
Breaking up your post for you for the benefit of otthers.
quote:Originally posted by lyme_ish: Hi I'm new to the site, (sooo relieved) to have a support group...
just reading everyone's stories has helped tremendously in not feeling alone and semi crazy.
My lyme-story is as follows: infected july 09, diagnosed 2nd stage lyme in Aug.09,
2 rounds of oral doxy thru August and September...I had no idea really what lyme was all about, figured I take the antibiotics and be done with it.
Symptoms lingered but I downplayed them to myself. Numbness and tingling in my legs, shooting pains in my head, back numbness, etc...
fast forward to about 6 months ago. I just think I over did it over the holidays, staying up all night getting things ready, trying to be a functional hostess thru obligatory family events, etc and then just like that I tanked.
for the last 6 months, I've woken up ever morning in pain. Sometimes I could barely move, the comforter would be just too damned heavy.
But I have a four year old. I don't want him to see me suffer, my husband (a chiropractor, and admittedly my saving grace, as he's been able to go toe to toe with various drs around this)
who's had my back for the last almost 2 yrs is at his wits end watching me "manage" it.
ANYWAYS, My primary physician sent me to an infected disease specialist, who sent me to a neurologist.
All 3 ran the same tests, which show lyme but inconclusively. After kicking and screaming (internally) I had a lumbar puncture, (showed clear);
yesterday I had an MRI,(and an allergic reaction to the contrast dye).
The neurologist says it's not neurological that it's not lyme. He says it's a chronic migraine disorder excerbated by the lyme.
In the last 2 months I've been prescribed morphine, hydrocodone, gambapentin (which is neurotin), and now amitriptyline...
i've had to wean off the neurotin (bad side effects for me)weaning off the morphine after I went into some kind of morphine toxicity.
None of these treat the CAUSE, though the amitriptyline has changed the quality of my headaches, I still feel the other very lyme-y symptoms.
I honestly thought I would just get a pic-line put in and it would be over again, but that seems to be off the table now.
Even my husband wants to believe the neurologist now, so I feel like I'm losing my strongest ally.
I don't want to emote or complain anymore to my family, I feel like a broken record. I've completely lost my gameface,
I had to take a leave from work, and am staying home now with our son, which I'm grateful to have as an option, but it's hard because I get winded so quickly.
I can't multitask, I can't really keep on with the same complaints to friends. My inability to cope often competes with complete overwhelm...over the littlest things.
I just feel...lost. I'm praying the the MRI results definitively show SOMETHING. I think my in-laws worry that I'm just crazy, and it's scary to think that they might be right:/
Ugh. I'm sorry.I just sort of let myself type...I'm crying with my still semi swollen face, and having a pity party for myself;)
My family is in CA, I'm in NY, and I don't really have anyone to talk to about this. If you've read this far, thank you.
I didn't realize I needed to vent, and to think this is my nutshell version, LOL.
I just want my life back. Since lyme, I've been in limbo.
Many Blessings. M.
okay now my 2 cents worth. Next time get an Igenex test,,,no other is worth taking, FIND the best LLMD you can get to.
Avoid the lumbar punture,,,worst test ever for lyme,,,and they use it to dismiss it.
Take your husband along to this real deal LLMD appointment, and he will be back on your side again!!
NOBODY knows enough of this complex disease. Coinfections can be worse than lyme,,,hence the term tick bourne infections.(tbi) more accurately describes us!!
Read read read on this site and other places the RIGHT info on your health concerns. Ask questions as they arise.
Long bumpy road coming back,,,but you will!!!! Key is finding RIGHT LLMD,,,if at first you dont find him or her search again!!!
meanwhile be kind to yourself--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
| IP: Logged |
posted
Thank you so much! I cannot tell you how GRATEFUL I am to have found this site. I'm feeling a little upset right now. My mother in law came in moments after I posted and informed me that I needed to tell my dr that she said I need happy pills.
She thinks i'm losing it=( I'm really doing the best I can, I just don't think it ever is enough! I mean obviously anti-anxiety medication would help, but felt attacked.
I'm sure she meant well, but I just want to know what's wrong with me, before I happily go skipping to Kohls with her. Grrrr. At least my intuition is kicking in, I feel like I can read her like a book, and I KNOW she is uncomfortable with my disposition. (validation from somewhere, i guess).
Of course I started leaking tears. Not really crying, just that tension spill over. It's just not the dynamic I'd hoped to have with her. This is not supposed to be my life....this doesn't even sound like me. Is it (lyme)-"normal" to not sound like yourself? To just feel so defensive?
So to come back and read your posts...thank you.
I will definitely look at the medical question posts. Since I already had the spinal tap, and the allergic reaction to the contrast dye with the MRI, I'm a bit the mess. Oh man, I'm slipping into vent mode again, sorry! I was really just going to say thanks...
I just keep waiting for a moment for my head to stop throbbing and this twilight-zone experience to stop;( I think if I reread this I'll chicken out from sending it, as I'm sure it reads spaztic. I don't normally sound like this. God, but my shoulders are to my ears.
I feel like I'm fighting gravity. Everything feels heavy and I'm trying to hold myself up. (great. more tears...what is with today???)
Clearly I need to get myself to bed early, even if it means just staring at the ceiling until 3;)
may rest find you all my new weary friends...health,wealth, and the time to spend both with those you love for all of you...
(Hope I gave enough spaces between, thanks again.) M.
Posts: 8 | From syracuse,new york | Registered: Mar 2011
| IP: Logged |
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