I'll start off by saying I very well might be posting in the wrong place or cross thread and If so I apologize I just couldn't seem to find a topic.
I haven't had a good experience with any physicians as of this time, at the moment I'm residing in a rehab hospital, and every time I sign any paperwork (this place does all labs etc. through an independent contractor) the diagnosis reads "Unknown-Other -Chronic Lyme Infection" but my doctor does basically nothing for me.
I've now decided to take my care much further into my own hands, I located a Lyme specialist, and have made appointments to see him and his colleagues to treat the co-infections.
I'm really just in need of the basics, I mean I've learned a lot about Lyme as a disease, but I'd really like to know what I Should be expecting once I'm getting proper treatment, I know this isn't an everyday thing to ask someone but I was thinking maybe some of you could give me a heads up of what a REAL treatment plan might look like, and effects and daily life.
At the moment I'm really not doing to well, I'm spending my life mostly in a wheelchair because I have debilitating pain and weakness in my right hip and leg, as well as my lower back. I also have dizzy spells on the regular that provoke nausea, and I get fatigued and tired very quickly.
Thanks so much for your time,
-------------------- Is currently undergoing treatment with doxycycline & ceftriaxone.
Also + for anaplasmosis :|
~Just because I'm sick doesn't mean I can't make beautiful music~ (still bowing away) Posts: 15 | From Massachusetts | Registered: Nov 2010
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The main thing right now is that you've found a good doctor to help you. Do you have confidence that you have found a dr who is very experienced in treating Lyme disease and coinfections?
Have you had any contact with "cured" or greatly improved patients of this new doctor?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome to the board. I'm sorry you're so sick. With treatment you can get better, but as Lymetoo says, be sure you're really going to a Lyme specialist.
Both Lymetoo and I have recovered from Lyme. It takes a LONG time, but it happens. Hang in there.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi, sounds like Lyme and maybe Coinfections have hit you prety hard.
When is your LLMD appointment? Also> I see you're from Mass, me too - can you tell us which doctor your seeing? Just give us his first letter. Example if his name is Dr. unknown write Dr. u
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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There is a lot of great advice here! hope you find the help you need.
feel free to PM me if you need, but Lymetoo and Sixgoofykids are the real experts at this.
God Bless! From Missing
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I was chatting with him last night. He told me he was considering the infamous Dr. S. (not a member of Ilads or a friend of the lyme community.)
Searching...have you considered the other LLMD I mentioned who takes insurance? He may be a good option, but is outside of Boston. I would go to him before Dr. S...if you want to get well.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3139 | From Massachusetts | Registered: May 2010
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posted
"Searching is going to Steere????? Oh no. About the worst choice possible.
Who advised this choice? No one that knows anything about lyme treatment, for sure.
Does living in a rehab facility restrict your choice of doctors? You are really going to need some medical freedom, support from family/friends, and money because insurance will not pay for it all.
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
Hi guys, Really sorry to not have answered at all, I'm finally getting some treatment, my LLMD has been treating me fairly well as far as I think. I'm on long dose IV ceftriaxone which isn't fun, but whatever makes me better right. Thanks to bcb I didn't go ahead and call dr. you know who.
I've been getting a small amount of my energy back, but I'm still not walking which would be nice, I mean I c an get up stairs and stuff with my own method, otherwise my physical deficits havent gotten all that better.
anyways, thanks for all of you folks for your help and support. I got lucky, I've lost everything I have from being in the hospital, I have no money and would be on the street if it weren't for me to be on these IV meds. I know it sounds ridiculous or maybe even even insane, but if you're in my area and have any extra space or know someone who might have some holiday spirit to help someone out who has multiple medical problems, no family, and no place to go, please pm me, I'm self sustaining and independent, I just need a space, even though I have pain issues a floor even? I've pleaded to everyone I know to no avail. maybe I'll find compassion from a total stranger. (and by the way, I'm not some old bum, I'm 21 recent college grad who had a bad hit)
Happy Holidays Guys, and sorry for my pleading Best Wishes
-------------------- Is currently undergoing treatment with doxycycline & ceftriaxone.
Also + for anaplasmosis :|
~Just because I'm sick doesn't mean I can't make beautiful music~ (still bowing away) Posts: 15 | From Massachusetts | Registered: Nov 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Searching_To_Rescue,
Glad to hear you are getting IV treatment and starting the healing journey.
I have to ask, since I am one not to know a whole lot, is there not some sort of help like a group home or the likes for someone in your position?
And not my business, but is sounds like you could get disability if you are not already on it.
There are certain programs for housing benefits for people on SSI/disability.
But I suppose you have gone down all these paths. It is hard to understand how someone who is so ill could be kicked out on to the street...where are the social workers?
Why were you in the hospital?
Wishing you the best.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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posted
I have applied for emergency SSDI, Emergency housing, I have to use a wheelchair for most of my day, which does make me "disabled" by the guidelines. the problem I'm having is timing, I've been in this hospital for so long that my insurance is on its last legs.
About 3 months ago, I had what a grand mal seizure (I am a partial complex epileptic) and had to be transported by EMS to a local hospital, I had initially a searing pain in the posterior part of my hip, and otherwise no sensation in my right leg. There was very little that was found on an immediate basis, my CT and MRI came back relatively baseline. I was hospitalized for 8 days with no improvement, so the internist decided to transfer me to an acute care rehab hospital. and here is where they found that I had lyme, confirmed by western blot, and positive PCR from a lumbar puncture.
I myself would have thought that they would have someplace but in all honesty the case managers (Social Workers) here are useless. they give me applications for housing thats known to take months just to process. I've tried to find something short term, but have pretty much failed, I've tried all my friends to no avail, especially with the holidays coming.
I just don't know what kind of a human being would do this to someone. I'm 21 years old, I know thats technically an adult but I have like no experience with anything like this. I live in Massachusetts where it was 7 degrees this morning, and these people have no problem releasing me out into that, not to mention that I'm highly immunocompromised to say the least, from the large doses of Rocephin.
Anyways,
Thanks for your support
-------------------- Is currently undergoing treatment with doxycycline & ceftriaxone.
Also + for anaplasmosis :|
~Just because I'm sick doesn't mean I can't make beautiful music~ (still bowing away) Posts: 15 | From Massachusetts | Registered: Nov 2010
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Okay...so will they keep you where you are at now as long as you are on IV treatments?
I wonder, since you are not getting any where with the case workers, if you can contact your representative's office?
Your state senators and representatives have offices where they have individuals who work for them that answer questions or help those who have run into road blocks when dealing with situations. They help people who are up against the wall...especially those where there are programs in place to help, yet somehow the system is failing them.
I have used that route on occasion a few times throughout my life and I always get an answer at least...sometimes helpful.
I just don't know what advice to tell you...I would google your senator/representatives number, they should be on the internet and give them a call...and see what they say.
I don't know...you could threaten to tell your case worker that you are so desperate, that you are thinking of calling your local TV station and telling them your story...that might get their butts in gear.
I am so sorry to hear these things.
The good news is you are receiving treatment...that is the best thing that could of happened for you right now.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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