Six years ago, my sister was diagnosed paranoid schizophrenic. None of the psych meds have worked. A year ago, she tested IgM + for Lyme and IgG + for Bartonella. She was treated for a few months, then tried to kill herself twice in two weeks by ingesting large amounts of Tylenol, so treatment stopped.
Following her fifth suicide attempt in three years about 10 days ago, she is being committed to a state mental facility in FL. She is currently slated to go to the one in Miami because of where she lives, but there is another facility in Jacksonville. We want her to go where she has the best chance of being treated for Lyme. If that is Jacksonville, we will have to show medical reasons and get a state representative involved.
I have posted another thread asking for LLMD's in the Miami and Jacksonville areas. In the meantime, my parents were told about the Mayo Clinic outpatient faciilty in Jacksonville by people who have gone there for non-Lyme illnesses and said that they were very good.
My father called and asked if they had any expertise in Lyme. They said yes, but he did not ask specifically about chronic Lyme.
I will call them with more specific questions, and would very much appreciate help from anyone who can:
(1) Suggest questions to ask them to determine if they understand Chronic Lyme the way ILADS doctors do, or the way Dr Alan S does;
(2) Tell me about any experience that you have had with Lyme treatment either at this or another Mayo clinic;
(3) Suggest any LLMD's in the Jacksonville or Miami areas; and
(4) Make any other suggestions.
Many, many thanks to anyone who can help. You can either respond here, or, if you prefer, by email to dogdazedntx AT yahoo DOT com.
Posted by lou (Member # 81) on :
Sorry to say, I haven't heard of anyone who has gotten good lyme treatment at any office affiliated with Mayo. Kinda doubt they would get bartonella right either. If you want to confirm this, you could ask what kind of test they use, whether they diagnose clinically, and how they treat chronic lyme. If you do a search of this forum's archives, using the search word Mayo, you will really get an earful of bad Mayo experiences.
Maybe you might pose this question to lyme literate psychiatrists. They might know whether any FL psych institution would consider organic causes of mental problems, and treat them. Let me know if you want contact info for a couple of these people.
Posted by tickedntx (Member # 5660) on :
Hi Lou:
Yes, contact info would be helpful. Do you think any of them would take my call, though?
Posted by lou (Member # 81) on :
Going to send you a private message with details, next ten minutes or so.
Guess I am not going to send you a private message since you have apparently disabled this function. Why don't you edit your profile so people can send you a private message? It is a lot more convenient than having to switch over to email.
Good suggestion from bpeck
Posted by bpeck (Member # 3235) on :
Even though he's several States away from your sister - I'd call Brian Fallon. He may either have some connections- or be able to refer you to someone in the area.
It's his area of expertise.
Barb
Posted by tickedntx (Member # 5660) on :
Lou:
I had disabled private messaging because, for me, anyway, email is easier since that is how I am notified that I have a private message, then have to come here to get it. I see your point, though, and have enabled private messaging now, though.
Barb:
Several months ago, I put together a binder of information about the links between schizophrenia and Lyme and sent it to my sister's psychiatrist who, as far as I can tell, did nothing with it. I had suggested that she call Dr. Fallon to consult with him, and also gave her the names of two other psychiatrists who treat Lyme (Dr. S in Naples, FL and Dr. B in NJ).
I have thought about calling him myself, but have no idea what to ask him. (Suggestions?) Perhaps a referral will be the best thing since there's really no way for her to get to him.
Posted by lou (Member # 81) on :
OK, sent you a private message, although if you know a lyme literate psych in FL, that might be the best place to call and ask for advice on what to do. That person will know the in-state situation the best.
Seems to me you would be well advised to make some calls yourself, rather than waiting for your sister's psych to get motivated.
Posted by aklnwlf (Member # 5960) on :
Hi there Ticked,
Well, seems like you got some good advice here. Especially in regards to finding a lyme literate psychiatrist.
Ticked, I went to the Mayo in Jax twice. To quite a few different departments.
I didn't realize at the time that I had Lyme and a few other nasties but neither did they.
Thousands of dollars later and much valuable time lost is what I got out of going that route.
One of the doctors there said I was overweight and that was the cause of my problems.
I wouldn't go there for anything related to Lyme disease or any co-infection.
From my bitter experience, they're clueless.
Good luck and I hope your sister get's the help she needs.
Posted by tickedntx (Member # 5660) on :
Thanks, alknwlf. Your experience confirms what I was told privately by someone else.
Many thanks to all who have replied. I really appreciate it, as does my family.
Posted by jsnyde2 (Member # 7888) on :
I am close to the Mayo Clinic in Rochester, MN. From experience, and from what others have told me here: "Hold the Mayo!!"
Posted by jsnyde2 (Member # 7888) on :
I am close to the Mayo Clinic in Rochester, MN. From experience, and from what others have told me here: "Hold the Mayo!!"
Posted by Christine202 (Member # 6158) on :
I was at Mayo Rochester twice over the summer b/c of complications due to Lyme called Dysautonomia.
Mayo was a horrific experience for me....they will go out of their way to disprove you have Lyme disease..... They havent a clue about it.
In my Opionion they were second rate Dr's in fancy buildings.
I agree try to see dr Brian F if you can or an LLMD>
Good Luck to you.
Posted by bugabooboo (Member # 7383) on :
I was sent to an ENT at Mayo. It was an attempt to figure out what was causing all my weird symptoms.
I was prescribed a year's worth of amphotericin B nasal washes for the thought that I had some wierd fungal infection. After two weeks of these my nose was so red and swollen I looked like Rudolph...and I crashed. Haven't been back to work since.
When I later determined I had LD, I called the Mayo at Rochester, asked if anyone there specialized in LD and was told by a snotty telephone girl that "all the doctors specialize in Lyme".
I haven't been back since.
Bug
Posted by rosesisland2000 (Member # 2001) on :
quote: We want her to go where she has the best chance of being treated for Lyme. If that is Jacksonville, we will have to show medical reasons and get a state representative involved.
I have posted another thread asking for LLMD's in the Miami and Jacksonville areas. In the meantime, my parents were told about the Mayo Clinic outpatient faciilty in Jacksonville by people who have gone there for non-Lyme illnesses and said that they were very good.
My father called and asked if they had any expertise in Lyme. They said yes, but he did not ask specifically about chronic Lyme.
I will call them with more specific questions, and would very much appreciate help from anyone who can:
(1) Suggest questions to ask them to determine if they understand Chronic Lyme the way ILADS doctors do, or the way Dr Alan S does;
(2) Tell me about any experience that you have had with Lyme treatment either at this or another Mayo clinic;
(3) Suggest any LLMD's in the Jacksonville or Miami areas; and
(4) Make any other suggestions.
Many, many thanks to anyone who can help. You can either respond here, or, if you prefer, by email to dogdazedntx AT yahoo DOT com. [/QB]
BEEN THERE DONE THAT!!!!! While the Mayo may be good at many illnesses, they ARE NOT, DO NOT and WILL NOT recognize Chronic Lyme...oh, and if there is a chance that your sister doesn't get or have a positive Lyme WB test, you can forget getting any find of help from the MAYO, in Jacksonville or otherwise.
IMO, and I did not read through all the posted responses to your original posted question, I'd runn like the wind in the opposite direction away from the MAYO as far and as fast as you can.
Oh and BTw my DX...one doc said I probably have Rheumatoid Arthritis since my mother has it...I returned to Sarasota where I was living at the time and then saw a Rheumy who was supposed to be the best in the state of FL, who was formally at the MAYO. Well, he dx'd me with Plandromic Rheumatism...go figure.
I finally dx'ed myself, presented my findings to my PCP now of 4 years, who cooperated with my LLMD and after over 3 years of abx of many, many kinds, I am now in remission...I haven't seen my LLMD in over a year now...
so to the MAYO!!!
Good luck with you sister, my brother, my only sibling was Chronic Paranoid Schizophrenic and committed suicide at age 27 in 1976. I can't imagine throwing in Lyme to boot...my prayers go out to you and yours.
Posted by tickedntx (Member # 5660) on :
Thank you all for taking the time to reply to my post. We have definitely ruled out Mayo.
My sister's only symptom of Lyme, if it is Lyme causing it, are the symptoms that have been diagnosed as schizophrenia. She is otherwise fine.
It is possible that, even though she tested IgM + for Lyme and IgG + for Bart that she has only been exposed to these pathogens but is not suffering from it.
But I think that she deserves the benefit of extended Lyme tx to find out, especially since she is non-responsive to psych meds.
I have been told of a very good LLMD in Ft. Lauderdale, so perhaps that will be an option.
![[confused]](graemlins/confused.gif)
![[Razz]](tongue.gif)
to the MAYO!!!