posted
Hi all, I am so ill to the point. I really would like to talk to somebody. I have posted a couple of time I was looking for somebody to talk to but I don't see my post Larry
Hi to all again. I am trying my best to reply to your kind e-mails with thank you but I have loss the ability to figure things out and I hav not been able to find the way to even speak to replay to somebody on the post . I am trying my best.
please just understand I am terribly ill and have loss the abilty to figure thing out. from brain problems. I am losing my mind and the sens of who I am as a man. and this is the sadest day of my life.
I have a lyme doctor but he has been very neglating me and not follwing though with treatment. so I crashed friday night .
(breaking up the post for easier reading for many here)
posted
I finally found my post. is there anybody that could speak with me privately of course Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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posted
I have been through so much but I have never been this ill. Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Larry,
Sorry to hear you are having such a tuff time of it. We all have had some experience with that, unfortunately. But, hang in there. Help is on the way.
I am the worst one to respond because I don't have a phone anymore, and I don't use the "PM" here at LymeNet.
BUT, hopefully soon someone will come along that can speak with you.
In the meantime, you are stuck here all alone with me.
And before others say it, that can be a freaking nightmare!
Don't know if you are aware of the support groups in your state. This list is not always up-to-date, but you may be able to connect with someone at one or more of these groups.
You may also want to share some of your story here for others to comment on. Nothing personal, mind you, but enough that we can try to pitch in to help.
There are many good folks here and some that are even smart too.
Hang in there Larry, as I said, help is on the way.
Sorry to hear you are having such a tuff time of it. We all have had some experience with that, unfortunately. But, hang in there. Help is on the way.
I am the worst one to respond because I don't have a phone anymore, and I don't use the "PM" here at LymeNet.
BUT, hopefully soon someone will come along that can speak with you.
In the meantime, you are stuck here all alone with me.
And before others say it, that can be a freaking nightmare!
Don't know if you are aware of the support groups in your state. This list is not always up-to-date, but you may be able to connect with someone at one or more of these groups.
You may also want to share some of your story here for others to comment on. Nothing personal, mind you, but enough that we can try to pitch in to help.
There are many good folks here and some that are even smart too.
Hang in there Larry, as I said, help is on the way.
Thank you tin cup for your kind response. I am so ill I just had an MRI and am having some beain bleeding problems. It is effecting me to the point I am losing the sense of my self With love Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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posted
I thank you all so much, I have been fighting this disease for 15 years and now it if effecting me to the point I am losing the sens of life and my ability to function. I have never been this ill.
I called 911 3 times in the past 3 weeks and all 3 times they sent me home to pretty much die. And said there is nothing they can do.
I just call a good friend of mine up who is a big high up person at MGH and he asked how he could Help . So he is putting in a port but I am so sick I am amazed I an here tonight. I am not a hupercondri
(breaking up the post for easier reading for many here)
quote:Originally posted by Mamanwithlyme: I thank you all so much, I have been fighting this disease for 15 years and now it if effecting me to the point I am losing the sens of life and my ability to function. I have never been this ill. I called 911 3 times in the past 3 weeks and all 3 times they sent me home to pretty much die. And said there is nothing they can do. I just call a good friend of mine up who is a big high up person at MGH and he asked how he could Help . So he is putting in a port but I am so sick I am amazed I an here tonight. I am not a hupercondriac in any way but I know my body and I am in trouble I have been in bed for 4 weeks. And I can go on much more .
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
You are very welcome. My bet is you are frustrated, worried and scared. I sure would be!
I see TX is sending you a PM. He is a good fellow and has helped others. Smart too.
It is Sunday night, not Lymenet's busiest time as many are getting ready for work and/or school tomorrow.
In fact, when Seinfeld use to be on TV, the slowest night here was Thursday cause many were watching the show.
The second slowest night was Sunday and I believe it still may be.
But, hopefully others will see your message and offer to help too.
Please keep in touch so we know how you are doing. OK?
Don't make me sit up worrying about you! You know how I get!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
BB, very good to see you. Thanks for responding to Larry. It sounds like he is having an awful time!
And it sounds like the problem is one we've had to deal with for a LONG time.... MA hospitals and stupid doctors. They are actually famous for being so stupid (and cruel).
It's one of the worst areas of the county to be in when you have Lyme.
Larry- while waiting for folks to respond, you can do yourself a favor and dump your rotten doctors off here.
quote:Originally posted by Tincup: You are very welcome. My bet is you are frustrated, worried and scared. I sure would be!
I see TX is sending you a PM. He is a good fellow and has helped others. Smart too.
It is Sunday night, not Lymenet's busiest time as many are getting ready for work and/or school tomorrow.
In fact, when Seinfeld use to be on TV, the slowest night here was Thursday cause many were watching the show.
The second slowest night was Sunday and I believe it still may be.
But, hopefully others will see your message and offer to help too.
Please keep in touch so we know how you are doing. OK?
Don't make me sit up worrying about you! You know how I get!
I tincup you are the sweetest thank you for being so kind. I have never in my life been this concerned. And the hospital are *******s.
please excuse me. I am having brain bleeding issues. I am sorry but I am afraid I will bleed out. I am not calling 911 I have been throught o much I will die at home if that is the out come. I just have loss of the ability to figure things out.
Love larry .Thank you so much for your responce you are an angel.
(breaking up the post for easier reading for many here)
posted
Thank you tin cup for your kind response. I am so ill I just had an MRI and am having some beain bleeding problems. It is effecting me to the point I am losing the sense of my self With love Larry
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well I may just chat with you all night as sweet as you are! I could use the attention!
Can you email me with your number in the event I hear back from someone? Some are not LN members or don't post often if they are. That way I can send your number to them and they can call you.
posted
Justa quick over veiw of what I am dealing with it all stated a month ago with a seizure and then I went don hill from there I have been fighting the tick thing for 15 years but now I am losing the ability to function and think.
I haver been in bed for a month no because of depression but from being so ill I couldnot function.
Now I am so ill with such headaces I had a MRI a month a go following the seizure and it show multi bleeding of different part of my brain. No something aomebody live through. It has n=been the longest last 2 days in my life. And I can't go much further .
I have called 911 for help 3 times over the last month asking for help and all 3 times they sent me home with not being able to even know what s=day it was. so I will never again call 911 I will die at home.
I love you all for trying to find someone to talk to but it doesn't look good as we are getting later. Larry
(breaking up the post for easier reading for many here)
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry, I will be up for at least another hour. I will be happy to chat with you here.
Seems like you had a doc who ordered the MRI. No doc for the brain bleeds?
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Larry,
Are you seeing a Lyme treating doctor? A REAL one? Have you ever?
And what meds and supplements are you on? Could they be causing the problems with your brain?
We need to figure this out so we can deal with it. Obviously the butt-heads in the hospital don't know and don't care. So we will try to help all we can.
Also, are you over 18 years old? Need to know in case we can find you a good doctor in the area that could see you. Don't want to send someone full grown to a children's doctor!
posted
Yes. I did and nothing yet.
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TF! Thanks for offering to chat with Larry. If he will send me his number ... nope, that won't work unless you email me so I can email it to you.
I am not sure Larry can use the PM function here. I've been here a zillion years and I still get lost trying.
posted
I used to be a smart engineer now I can't even take care of myself. I will not live this way. this is not living. But I love you all for trying to find somebody to talk with Love Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
seriously, how lucky are we to have Tincup ? Posts: 2977 | From Florida | Registered: Nov 2016
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Larry! Ok, I just contacted someone who sent you a PM. Don't know why you didn't get it yet.
When they return home I will ask them to try again. In the meantime, please check it ever so often.
posted
tin cup I responded. Thank you and thank you to everybody for trying to get me help. Love always Larry.
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Larry!
Just responded to your email. I am a bit slow... ok I am really slow... but just sent you a response.
Plus, I am trying to train a raccoon that has been visiting me nightly for a couple of weeks. He thinks my home is his home and he is sadly mistaken. At least I think he is?
Anyhow...
TF, if you will email me I can share Larry's info with you. Thanks!
posted
Hi to all you wonderful loving folks. I just took a little something to keep me calm and a little kit of something for the pain.
My brain has the lost the ability to think and to figure things out. I am a man lost with not much hope any more my Lyme doctor said he sould help me but never did anything. and I will have to deal with that tomorrow.
even the worse doctors that I have seem have sad that if I didn't get help I was on a dead end street. but then sent me home.
My therepist took my MRI into her boss who is a good Lyme friendly MD and he sad without a doubt it was from the tick infection. and I received some labs back last week and they shaowed a positive babesia.
My surgeon ask me how he could try to help but said he would have an IV line in me within 48 hours but my lyme doctor is not calling in my scripts in the last month.
This is so bad that I am in the worst place somebody could ever be in. There is only one place left. and maybe I can't keep this fight up. I am tired and frustrated. sorry.
I am always a positive man but I am sick and just ask for you to please understand and yes I check my private e-mails regularly but no luck yet. Thank you to all Love you all Larry
(breaking up the post for easier reading for many here)
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well, now we have some answers. Glad you shared that.
Babesia will mess up your mind, put you in a low place, and cause headaches. BIG time. I lived with a Babesia headache (and other symptoms) for 15 years. It was unimaginable.
Then I was finally diagnosed and treated. And....
POOF! Headache eased up and FINALLY went away!
Got my thinking ability back so much so that I was as smart as you are!
Ok ,maybe not as smart as you, since you are an "engineer", but I could pass a third grade math class with flying colors.
Giving you some time to review the email I sent and waiting for a response. Now that we can "see" some of the problem, we can fix it.
Now, you can't give up because some doctor is too stupid to help you or get it right. The day we depend on them for everything, we all might as well give up.
posted
The surgeon if my friend and I seen him on Friday and he was so worried about my that he is putting nin a port on Thursday but my lyme doctor is being very negligent to following through because of greed for money
please excuse my selling my brain is not working. everybody is so worried excpt my lyme doctor is leaveing me to die.This is why I am so frustrated and concerned I am on a dead end road. and fast. I can't stay of of bed.
(breaking up the post for easier reading for many here)
posted
I just want this to end.Please forgive me I love you all so much for try to help me. but it is 11:50 on the east coast and no luck tonight. I am sorry and I thank everybody for your kind attempts to find somebody to talk with me, .
Posts: 39 | From Massachusetts | Registered: Mar 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
OK. I will pray right now and tomorrow, etc. that this problem with the lyme doctor gets straightened out by Thursday so you can start using your port right away!
I would still call your surgeon friend tomorrow and ask if he would call your lyme doc about the meds. Doctor to doctor, this could get worked out.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
TrekCoord just contacted me with a PM and I figure out the way to respond privately to send him my number I hope he is still able to call. I love you all for being such wonderful and beautiful people.Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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posted
TrekCoord I just sent you my nuber and I also sent it ti tincup who know how to use this system to send something privately Thank you to all you are all the best. With love Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Here is a number we share with folks who are feeling lost and at the end of their rope.
They have been able to help many by just talking with them. I've called them several times and they were able to provide support for folks in bad times.
posted
Hi all TrekCoord contacted me per PM and I sent him my number. Hopefully he a late person. you are all such wonderful people Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Good, Larry. I am praying for you and will continue tomorrow.
Keep us posted. We will all be back here in the morning. So be sure to tell us how everything is going.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Well, no luck tonight. I guess I need to realize this is how it is . I am sorry for putting anybody out of your way tryiung to help me.
I am a very strong man and I know my body and This is not living and I want everything to just stop. I love you all
timcuo if somebody on the west cost is still uo please feel free to give my number even ar 2 am I am not sleeping I am to worried and illl, with love Larry
(breaking up the post for easier reading for many here)
posted
If by chance somebody is up and knows about this disease and is able to drop me a call I would greatly appreciate it. I am awake I am to ill and suffering to much to slep. PM me and I will give you my number. Larry.
Posts: 39 | From Massachusetts | Registered: Mar 2017
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry, what about the meds you just took.
Are you getting any relief yet?
Posts: 9931 | From Maryland | Registered: Dec 2007
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
Larry - did you ever talk to anyone? I don't know much about what you're talking about - but I'm up and could talk a few minutes.
This has been a rough weekend for many - ice storms, time change - and IIRC a full moon???
PM me if no one else has called you.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I'm sorry Larry. Looks like you will have to watch some TV or read a book to get you to sleep for the night.
I don't know why TF hasn't emailed me or called you, or TX either, or any of the support groups or anyone else I've contacted. Very disappointed.
Your request for help was a late Sunday night post and it appears we don't have anyone able or willing right now to speak with you.
Remember they are all volunteers and can offer to help or not. (Not much support in that statement, but it is true.)
Guess as I said earlier, you are stuck with me. Poor thing!
I've done all I know to do for now with this late night hour and with limited resources, so how about you check back tomorrow and we'll see if anyone is available then?
In the meantime you should call your Lyme doctor when their office opens, or I can- just let me know- and tell them to get on it NOW!
You can also try to understand things take much longer it seems when we are feeling our worst. We need to have some patience. Things will get better. They don't stay horrible all the time.
Sorry I've failed you by not being able to round up some members here, but perhaps tomorrow you'll have better luck.
Hope you get time to review the info I've sent and get back to me about it and what you want to do.
posted
Tin cup. I don't know if you are still awake but last week I got back a pacial positive babesia. I don't know what that means but I am tire od fighting . I really am. Maybe it is time to see my dad. You are the greatest Larry
I was hoping to be able to talk with somebody last night since I am all alone going through this and I just can't go it anymore. Larry
(breaking up the post for easier reading for many here)
posted
a had TrekCoord write to me and ask if tomorrow was good. . I am sorry I am just tired so trying to feel better. I don'e have to be 100% but my world is crashing and I am losing the fight.
Posts: 39 | From Massachusetts | Registered: Mar 2017
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Tincup I can't thank you enough for all your attempts to get somebody to talk to me . You a wonderful person. Larry
Posts: 39 | From Massachusetts | Registered: Mar 2017
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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I know virtually zero about Babs and brain bleeds - but I can talk a few minutes.
Would not want to tie up a line in case anyone is trying to get through to Larry though....
I'll call if someone PM's a number.
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry, click on the envelope icon above susank's post and send her your phone number!
Posts: 9931 | From Maryland | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Susank,
I don't do PM. I can only email. If that doesn't suit you, Larry will have to send it to you.
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Gosh thank you for all you did to try to help Larry, Tincup, TF and susank! You are good souls.
I will try to contact Larry through PM and give him doctor info for his area. I don't understand how his Lyme doc is not coming through for him now. Horrible!
Posts: 2386 | From New England | Registered: Aug 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Larry, how is it going today?
Thinking of you.
Posts: 9931 | From Maryland | Registered: Dec 2007
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I am posting this on all your threads, so you'll be sure to see it.
PM sent LLMD names for MA & NH.
There is a Lyme-literate Neurologist in CT - sent you his contact info. He does not treat Lyme, but the neurological problems resulting from it. Maybe he could help you too.
I've been reading your threads and wanted to say how sorry I am that you are going through this. Please know you are not alone. I pray every day for all those who are ill, especially with Lyme.
You need to be evaluated and treated by a good, new Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
When calling for an appointment, ask if they have any cancellations or a waiting list (call every day if you have to!). Patients have been able to get in sooner by doing this.
Read the books (if you are able) written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and "How Can I Get Better?". They are an excellent source of information.
Also "Cure Unknown" by Pamela Weintraub. Check your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but you need to break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet in who cannot read large blocks of text due to neurological problems from Lyme.
To do this, click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
I hope you are better and I wanted to share some things I thought might encourage you.
For uplifting, encouraging, life-changing music, listen to KLOVE (FM radio). You can listen anytime online www.klove.com or on this local FM station in your area:
Hartford 106.9 FM
Your life most certainly matters. After all, you are "fearfully and wonderfully made."
Prayers and blessings to/for you on your healing journey.
Posts: 8981 | From Illinois | Registered: May 2006
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posted
Hi Larry, I happen to live in the same area as you and have been going to a very friendly Lyme group in Concord MA the past few months. It sounds like you might not be healthy enough to make it out to the meetings but if you're ever feeling up to it I can pm you the info!
Posts: 87 | From Massachusetts | Registered: Aug 2015
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My opinion is that you need a knowledgeable LLMD managing your care, ASAP.
So my question to you at this point is, are you okay with making a call to an LLMD who you get a referral for or do you want others to help call and make that contact and help get you in?
And it needs to be an office with no raccoons running around it...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
Oh, I'm just now seeing this thread. Hang on Larry!! Find the right doctor and hang on.
Honestly, I think most of us have had to talk ourselves into continuing the fight over and over again.
You can do it. If you get a minute, go read the success stories that are posted. When I'm feeling pretty low and hopeless, I read them and remind myself that people DO get better and have a happy, functioning life.
Posts: 798 | From Cincinnati, OH | Registered: Jul 2016
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