HELP from someone proficient in late lyme please

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Veteran Member

Date Joined Oct 2007
Total Posts : 748
   Posted 10/23/2008 6:31 PM (GMT -6)   
I am a mess. I need to try to figure out what to do. I have not had treatment for oh 2 and a half years but it wasn't a cure then but I guess as far as I know maybe better (on rather than OFF treatment)           .  I am losing everything, and having time lapses pain had been in neck head and legs for a long time now in ribs and back and still head.  is there a way to diagnose encephalitis?   I might be getting insurance . Are there any lyme     drs in michigan who take medicaid?  i doubt it, this is the insurance I might be getting.  I am feeling myself wanting to rage I lost another prescription I lose everything i can't remember anything it is so hard. Is there any one here versed in late lyme?  I had the rashes in 1996 but was very sick in 1990 -Iforget but from 1992-199o something i had a remission for 2 years but I did not know it was a remission i just thought that iT was gone and I was well got real bad in 96  multiple em             rashes on right side of belly and thigh,       funky colored tongue funky colored nails so sick got to lyme dr. stayed till probably 2 and a half years ago. so i was treated for years using different combos when one combo quit working. I have no spleen so i wonder if this might explain why i could not nor can kick this its kicking me.
one night this week I opened white tuna can (in all fairness I was dizzy and felt weak, I figured low blood pressure) the tuna in the      can had what looked to me like blood laced in it, in the "white tuna"        i threw it in fridge curled up fell asleep next morning showed husband there was no red. My god do late lyme people hurt like hell. forget everthing and i mean everything and hallucinate????   Please if you have heard of this let me know Also does an autopsy show the borrelia or other co-infections?  Would it show swelling of the brain and most of all does anyone know a lyme doc that takes medicaid thanks so much I hate asking for help but this can;t go on.  also sometimes I feel like i am disconected from m,yself there is a word for it i majored in psych, now thats an irony i think its depersonalization. maybe someone knows a lyme research study that needs volunteers I am here . thank you please dont think I am crazy i am but since i see it happening that is a good thing, lisa 

Regular Member

Date Joined Jul 2008
Total Posts : 104
   Posted 10/23/2008 7:46 PM (GMT -6)   
Hi rosesinjanuary,

above is a link to a neuropsych evaluation that Dr. Robert Bransfield uses for neuropsychiatric lyme disease. He and Brian Fallon MD at Columbia have written a lot about late stage neurological/psychiatric lyme. I'm not an expert. I'm in the mental health profession and in addition to myself and my husband having lyme, I have clients with lyme and know colleagues and their clients with lyme disease. From what I know your symptoms could be late stage neuropsychiatric lyme disease- especially as you have been diagnosed and treated for lyme disease over several years. I know someone who has had intense neuropsychiatric lyme with late stage lyme. The good news is that this person has improved majorly with treatment- primarily with rocephin lV. I've seen lyme induced psychosis along with severe neurological and psychiatric symptoms(all lyme disease). Hang in there and know you are not crazy. I hope you can find good help, insurance etc.
Sometimes Columbia University (Brian Fallon) looks for people for studies. Good luck!

Regular Member

Date Joined Feb 2006
Total Posts : 346
   Posted 10/24/2008 10:58 AM (GMT -6)   
Does anyone know of a LLMD in Michigan?

On this forum, Ticker is usually the one to contact for a list of physicians to see. You will find her name in Members at the top right corner of this page.

It sounds as if you are very limited on funds to spend. Is there any physician in your area who takes medicaid and would be willing to treat you? You need an advocate to help you - a friend, your husband or family member, a church person, anyone who would be willing to help you get started.

I had neuropsychiatric symptoms from lyme - stuttering, forgetting everything, losing things, unable to organize thoughts and what I needed to do. It was very frightening to go from a highly functioning person to someone who felt they were losing it. You need to get someone to evaluate you in light of the fact that you had lyme in the past. Take it one step at a time. Print out this flyer and take it to a physician or mental health group.

There is hope - I am doing very well after being treated with IV's. I have my mind back, my organizational skills are sharp, and I am physically doing things I could not do a year ago. I even went to a wedding yesterday - which would have been impossible a year ago because the sounds would have been overwhelming and trying to listen to people and carry on a conversation was really almost impossible. Again, there is hope.

Regular Member

Date Joined Jul 2008
Total Posts : 78
   Posted 10/24/2008 1:26 PM (GMT -6)   
Contact for a great doctor that can help you.

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 10/24/2008 2:03 PM (GMT -6)   
hey rosie
please feel free to e-mail me directly for some support. I understand what you are going through. No you are not losing your mind. yes all of your symptons are very understandable.
think of your lyme as a coke a cola...and your body as a lap
ok now...pour the coke on your lap top. is your lap top working now?????
is it crazy??? had been ruined with the coke all in its system.
and guess what????
there is something you can do to fix it.
and guess what......most of the d.s that you go to and only going to give you pills....would a pill fix your lap top...think not.
You feel like crap because you have this coke all over you. and are malfuctioning.....:>)
this lyme is one hell of a battle....
ask me anything. I have tried it all..and I am like most...a lab rat...but I do have good news....miss lab rat has come very good news....
I got Lymes in 2004. So did my 11 mos old daughter and my favorite dog Toto.

Martha's Vineyard
Veteran Member

Date Joined Jul 2008
Total Posts : 1119
   Posted 10/24/2008 2:07 PM (GMT -6)   
What state are you in for starters????
tap on one of the forum chiefs here on this site..and for one...ask for a LLMD in your area. And feel free to write to me directly. my whole family...two daughter and dog and myself all are in this BS battle for a cure for Lyme. I now have a new hobbie and that would be telling my fancy dr.s to pull their heads out of their butts..
my would not believe how a dr. who did nothing but get laid and drink beer all though medical school.....30 years ago..thinks that they know all about lyme...
no! they don't. and unless you enjoying fighting all the time, then get a dr. who understands you. You do not have the time or energy to tell off Dr.s right now...leave that up to me....
I got Lymes in 2004. So did my 11 mos old daughter and my favorite dog Toto.

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