posted
I found this site because I'm searching everywhere trying to get help for my soon to be husband.
He's had Lyme for 20 years now untreated. The tests in Alabama where he's from weren't accurate.
So he's had before and more now of the constant body pain, he has no pituitary gland in his brain, he's got adhd, and now a severe case of narcolepsy.
He also has a hereditary kidney disease that has his kidneys not absorbing potassium, magnesium and phosphorus back into his body.
All of these illnesses has forced him not to be able to work a stable job. He's lost his shared custody of his children, can't see them,
the court doesn't believe how sick he is, been denied disability and cant drive because of the narcolepsy.
He can't complete sentences, type or text well. All his thoughts are like they are stuck on the tip of his tongue.
He'll stutter trying to get out what he wants to say. He gets confused and forgets what he gets up to do or what he wants searching for.
I was looking for info on doctors you have seen. The narolepsy is so bad that I'm desperate trying to find him someplace to go.
Right now I'm trying to get him into a neurologist to help with the narcolepsy but I know that's not enough.
He's so frustrated and depressed. I'm frustrated over it and overwhelmed and scared he's going to die before I can even marry him. I'm doing my best to find someplace to help him.
He's gone from a man who was upbeat as can be to someone who's barely awake, frustrated, feels the entire world is against him, out to get him, and won't listen or understands how bad off he is.
There's only so much a person can take and he definitely takes more than anyone else I know and doesn't deserve it one bit.
I'm so unfamiliar with all these other infectious side effects. I feel like there's not enough time in the day to read it all to figure a sliver of it out.
He's going to a primary that has Lyme but has never talked a moment about all this other side infections that are possibly happening. No assistance on reading material.
In just a few short posts I realize I have no idea what we're dealing with.
I appreciate any help people have time to give.
............................................
(breaking up the post for easier reading for many here)
posted
I am so sorry this is happening to you both
I would start by posting a request under the "finding a doctor" topic
and see if you can get him to be seen and evaluated
if it is Lyme, the treatment can have miraculous reversals of symptoms in some cases
the first appointment is usually very expensive because the doctor usually spends an hour or more with you
the treatment is not easy but worth it - but you do need a knowledgable health care provider t guide you along
to distinguish a "healing crises" from progressing illness or other causes - the healing crisis commonly experienced in Lyme means that you may feel worse at first when the bacteria die and your body has to deal with that
hang in there!
-------------------- Persistence, persistence, persistence!!! "Nothing in the world can take the place of persistence... Persistence and determination are omnipotent." attributed to Calvin Coolidge Posts: 599 | From USA | Registered: Jun 2011
| IP: Logged |
posted
I agree with Harmony, that you should post in Seeking A Doctor for referrals to very experienced Lyme docs. Put the state(s) in the heading where you're willing to travel to.
Re co-infections, I usually recommend that folks look at a list of symptoms for the main ones - babesia, bartonella, erhlichia - and see if anyone thinks they match any.
Just curious when you say he's got no pituitary gland - was it surgically removed? Was there a tumor?
I also think he deserves some legal help, if anyone here can steer him to some.
Posts: 13117 | From San Francisco | Registered: May 2006
| IP: Logged |
me
Frequent Contributor (1K+ posts)
Member # 45475
posted
LymeinFingerLakes, I'm terribly sorry both of you are going through this.
Thank you for sticking by your fiancée. You said that you realize you don't know a lot about other infections and you've realized there is a lot to learn about this. I get the feeling you are naturally overwhelmed.
Are you up to reading a book or two about Lyme disease and coinfections? Absolutely no judgements if you're not up to it.
If you are up to it, "Why Can't I Get Better?" by Dr H and "Cure Unknown" by Pamela Weintraub are two excellent resources. For a quick and eye-opening overview, you can watch the movie, "Under Our Skin." The movie may be the easier, less overwhelming option for now.
Welcome to Lymenet.
-------------------- Just sharing my experiences, opinions, and what I've read and learned. Not medical advice. Posts: 1431 | From USA | Registered: Mar 2015
| IP: Logged |
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Welcome lymefinger , also kudos on sticking thru with him ..my partner has hsd option of nit watching me die but she continues to help me live..on you toob there is a video called justinandcristie from canada. It shows her 4.5 yr fight and her partner...
Even hawkings partner stuck thru for as long as she could...you are up agsibst a industry and a estsblishmrnt and many microbes and i would bet fime to dollar that hereditay kidny thing is congenital and has to do with multi systemic infections. Check cpn.org
they said his wife was wheelchair for life with ms .a stratton protocal of abx pulsed has her walking and painting again
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Finger Lakes,
I was nearly done writing to you and the electric suddenly went off for no reason other to annoy me and the post to you was lost. Ugh! Trying again.
I agree with "me" and some others who posted above- "Thank you for sticking by your fiancée."
And thanks for educating yourself to help him. The others gave you great information- they are really great with helping people.
I'd also suggest the two of you watch Under Our Skin- the multi-award winning movie. Here are some links so you don't have to search for it. Don't forget the popcorn!
quote:Originally posted by Tincup: Good to hear you got in to see someone at the sleep center (saw it on another post).
Were you able to locate a good Lyme treating doctor?
Hope so!
Not yet. I thought Dr. P would be good but heard mixed reviews and hesitant. Trying to get into Dr. M but nothing yet. Just sent an email. Could you PM me the names you mentioned above? Thanks!
Posts: 14 | From Finger Lakes, NY | Registered: Jul 2016
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry- I don't PM. I do cha cha and do the funky chicken once in a while though, if you are interested? ~smile~
I'll give you a hint. There is only one (male) Dr. L and one Dr. C on my list, so picking the right ones should be fairly easy.
posted
Sorry tin cup, having a hard time figuring out which site to use to find your doctor list.
Posts: 14 | From Finger Lakes, NY | Registered: Jul 2016
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic