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Old 09-01-2005, 11:41 AM   #1
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Mayo Clinic? Can we get an answer there?

My husband has been suffering for 3+ years with lyme-like symptoms. We have been to several doctors and have had many lyme tests - some positive (Igenex), most false positive, MRIs, spinal tap, and everything you could imagine.

He was IV Rocephin for 28 days with no reaction. Then his infectious disease specialist said it was not lyme because something should have happened on the IV.

Next he was diagnosed by Steven Phillips in Wilton CT with chronic lyme and treated with Doxy then Mepron/Zithromax. his CD57 came back low (30). When he was feeling worse on the Mepron with increased and new symptoms we went for a second opinion and were told he does NOT have lyme disease! There is no proof and the antibiotics are making him sick. Then he went off of the antibiotics due to this second opinion and it has now been 2 weeks and since then he has not been feeling good, lots of canker sores, headaches, aches and pains head to toe and just down in the dumps.

So after being back and forth, yesterday he went to see his general practitioner who he hasn't seen in years and he told my husband that he doesn't think it's lyme either and that you have to be careful with lyme because he once had a patient who had to be institutionalized because she was convinced she had lyme and would not take no for an answer...Can you believe that???

So anyway, my husband has been thinking about going to the Mayo clinic to get an answer once and for all. Does anyone know anything about the clinic? or know anyone who has been there?

I have no idea what is giong on anymore...

 
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Old 09-01-2005, 12:44 PM   #2
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Re: Mayo Clinic? Can we get an answer there?

Hi Meggie T.

Are you familiar with the Jarisch-Herxheimer Reaction (herx)? Often when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary and intense but it is a good sign the antibiotics are working.

To me it sounds like your husband has had this reaction. I do not believe it would occur if he was not infected. I recommend that you reconsider starting him back on treatment for Babesiosis and Lyme. Twenty-eight days of IV is not long for someone who has been sick for years. Also, many Lyme doctors believe the co-infections should be treated first for Lyme treatment to be effective. It can take time to recover from these infections and it is normal to feel worse before feeling better. With many other infections, you start to feel better after starting treatment. This is not usually the case with Lyme disease. In my opinion, some cases of Babesiosis can be as difficult or more difficult than Lyme.

It is always good to have every possibility checked; but if Lyme and co-infections are what is wrong (which in my non-medical opinion sounds to be the case) the most important thing is to see a knowledgeable doctor. From all I have heard, Dr. Phillips is one of the best. I would not go to the Mayo Clinic for tick-borne illness evaluation.

 
Old 09-01-2005, 01:22 PM   #3
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Re: Mayo Clinic? Can we get an answer there?

I was in agreement with Dr Phillips that he was herxing and that the increased/new symptoms were a positive sign that the Mepron was working. However, my husband was never satisfied that it was definitely lyme. He had Dr. Phillips saying it was and it seems like chronic lyme, but he was not convinced. That's when he went to see Dr. Hilton who said as plain as day YOU DO NOT HAVE LYME DISEASE! When she said that he should stop taking the antibiotics he was relieved because he hated taking them. He could not just go on taking Phillips' word for it without further proof. So that is where we are now and I think that my husband is dead set on the Mayo clinic because in the back of his head he has always thought it was something else. He is very afraid of ALS - when the NY Times article mentioned that ALS had been misdiagnosed as lyme he almost cried. That is his fear. He had that ALS test to rule it out but he still fears something other than lyme which is why he thinks the Mayo clinic might be able to give him a definitive answer...but I just don't know, you know?

Thanks for listening....it helps!!

 
Old 09-01-2005, 01:57 PM   #4
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Re: Mayo Clinic? Can we get an answer there?

Meggie...I agree with Ticker about Mayo. I was seen there a few years ago over the course of a year by practically every single department and they could never determine what I had. They passed me around with various diagnosis, with nothing helping despite mounting costs. Finally they decided that it was all in my head and I should be commited b/c of my hypochondric tendencies. Whatever! At last resort we sought out a long time physican friend who offered to try antibiotics...they worked. But b/c of all the time spent messing with Mayo I had to have IV treaments for over a year to become well again and missed 2 years of school due to the chronic state of lymes I was in. So my advice is do not go to them for Lymes, stick with someone who is known for their lymes knowledge. Be patient with the antibiotics...like my dr, Dr Crist says "you did not get sick in a day, don't expect to get well in a day either". Tough words but very true. Whatever you do I wish you both the best and stick around at this board, it's a wonderful resource.
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"Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

 
Old 09-01-2005, 04:51 PM   #5
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Re: Mayo Clinic? Can we get an answer there?

Welcome, Meggie:

I wish your husband had the patience to read through some of our histories to learn more about Lyme and how some of us have struggled with years trying to get a handle on it.

I, too, go to Dr. Phillips after having been dx'd with Alzheimer's even after a spinal tap and other tests positive for Lyme. I continued for years to get worse, with increasing symptoms and severity, but what I want to stress is that I didn't get answers from anyone quickly and suffered through Herx's many times, wondering why I wasn't getting better, even after a month of i.v. treatment and many years of stingy (as in little bits) of abx given by reluctant docs until I was told about Dr. Phillips.

He has truly made a significant difference in my health and life and explained many times to my "foggy brain" why it was taking so long to feel more consistently better.

I've had multiple meds over the years with him, formulated according to my symptoms, which wax & wane, and I have now been on weekly injections of BiCillin for 3 months with another 6 weeks to go, then may go on Diflucan when I return to him in October.

 
Old 09-01-2005, 05:01 PM   #6
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Re: Mayo Clinic? Can we get an answer there?

Sorry this is so "long" (but it's really short in term of compressing more than a decade of Lyme and treatments) but I feel such sympathy for anyone going thru what sounds like Lyme symptoms and thinking of giving up! We're all sick of taking pills for so many years and researching and questioning and hurting and falling and loss of memory, slurring of words, pain others would not believe and constant fatigue!! That's what having this disease does to us. If he does not want to put in the effort to get better, but to just be afraid of "what it might be" he may suffer as I do from not being treated correctly and long enough in the beginning, from abnormal brain scans every few years showing more and more damage to the brain that he'll wish he had put in the time and effort in the beginning -

truly, I don't want to appear harsh, but this can be a very destructive brain disease if not caught in time and taking abx for a year may save a fortune in money for RX's, loss of jobs, ability to do everyday thinking and moving and as it was said, the abx's could be causing a Herx and when he understands the life cycle of the spiroketes (I know, it sounds overwhelming now) he'll feel there's light at the end of the tunnel and that he has more control.

Try everything (and give it time to work) ask everyone and hang in there. We're here for you both!!!

 
Old 09-02-2005, 03:28 AM   #7
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Re: Mayo Clinic? Can we get an answer there?

lastly, i'd add... the mayo clinic does many wonderful things, but in my brief relationship with lyme, i've heard 'mayo & lyme' in a negative light many times... although they are a top research hospital and you'd think they'd be on top of lyme, this is NOT the case and thus, those actually suffering from lyme, have gone thru their system losing valuable time, resources, health and hope... and thinking they were getting the best in the nation... not when it comes to lyme...

and to you wife, god bless you and keep you and continue to give you strength and patience and wisdom and protect your health along the way... you can't make him see the truth.... cj

 
Old 09-02-2005, 07:38 AM   #8
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Re: Mayo Clinic? Can we get an answer there?

I have had little successs convincing him to be patient with the meds - he is very stubborn. Dr. Phillips could not even convince him that it was working. He will take any test go to any doctor, but he hates taking the pills. He hates what the pills do to him. Even the fact that he has to plan what he eats or does around the medication schedule. It drives him crazy!

At our last appt, Phillips said something about possibly trying another IV course after the Mepron (if necessary). And that was the last thing T wanted to hear. He shut down after that. He said to me "I'm not doing that again, no more IV" And then when other doctors started calling Phillips a quack and saying that the antibiotics are what's making him sick - he wanted to believe them.

I just don't know how to convince him anymore. I see that he is miserable and he is starting to feel guilty for being sick. He has bowed out of my family's trip to Ireland (we're going next week without him and I feel horrible leaving him) he feels like he's disappointing me but its hard to convince him otherwise, that I just want him well and I don't blame him for what is happening. I just want our life back to normal!

 
Old 09-02-2005, 08:41 AM   #9
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Re: Mayo Clinic? Can we get an answer there?

Meggie, you have my sympathy and support in your frustration. I, too, years ago, heard "quack-type" reports about Dr. Phillips, so I waited almost a year and listened to and researched every possible source before going to him.

If your husband does not want to set aside time and effort to devote ONLY to discovering as much as he can about his illness and understanding that somewhat like chemotherapy, patients do feel worse for a while before they feel better and also attitude is a great helper, but he can't just curl up and not suffer through the effects. No one here has had that luxury, much as we all would have loved it!!! He MUST put in the work to get better or he'll continue to get worse, sadly. My prayers and positive thoughts go out daily now to both of you....


We've been to Ireland twice (once when I was in the throes of Lyme) and I absolutely love it and the people are wonderful! Enjoy it for both of you!

 
Old 09-02-2005, 09:09 AM   #10
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Re: Mayo Clinic? Can we get an answer there?

meggie,
what is popping up in my mind/spirit are the days of raising our daughter... knowing how important it was, that when we disciplined her we kept our own stuff out of the way as much as possible so she was left to ponder only her actions, responsibility, etc... not what jerks mom/dad had been in the process... which, trust me... we failed many times and muddied the water well for her...

the connection to you and your husband's illness??? you are totally supportive of him and i do hope that never wanes... but i wonder if the same principal might eventually apply here... that as long as he has you to 'fight', as to whether or not it really is lyme, etc... his energy is distracted... that eventually, (always with your full support) he will be best to be left alone to wrestle with this giant... that wrestling with you may eventually become a distraction, taking his focus off 'the main thing'...

just a thought... and support to you that it DOESN'T mean you aren't supporting if you do decide to back off a bit... you can lead a horse to water but you can't make em drink...

i do so feel for you... cj

 
Old 09-02-2005, 11:34 AM   #11
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Re: Mayo Clinic? Can we get an answer there?

Quote:
just a thought... and support to you that it DOESN'T mean you aren't supporting if you do decide to back off a bit... you can lead a horse to water but you can't make em drink...
I do see your point, and I have been hesitant to ask him to go back to Dr. Phillips because I don't think he needs me pressuring him - it's his body and his decision in the end. I can't force him to do anything. He has been through a year long phase where all he was doing was researching his symptoms and reading about lyme (and ALS, lupus, etc.) and worrying that he was dying of some brain tumor. Now he's at the point where he's sick of it. When I asked him to read Healing Lyme, he said he was tired of reading and can I just tell him what it says? Well, I can tell him until my face turns blue what the book says but I can't make him believe that he has this disease! I gave him the Stricker speech from the 2004 LDA conference on the CD57 subset, and he read that but that was tough. I will keep trying to divert his attention from the Mayo clinic, but he is sort of OCD and this is his new obsession...

Last edited by Meggie T; 09-02-2005 at 11:37 AM. Reason: misspelled word

 
Old 09-02-2005, 12:05 PM   #12
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Re: Mayo Clinic? Can we get an answer there?

Quote:
Originally Posted by gerribear
[SIZE=2]Meggie, you have my sympathy and support in your frustration. I, too, years ago, heard "quack-type" reports about Dr. Phillips, so I waited almost a year and listened to and researched every possible source before going to him.
Gerribear,
Did you ever find Dr. Phillips hard to follow? I think my husband found him confusing at times because he would mention so many different antibiotics in one sentence and then branch off into talking about other patients success stories (sort of stream of consciousness). I think at times that was too much for T. He would come home and say I really don't know what he is talking about half the time...I can't follow.

Did you ever have trouble understanding him?

 
Old 09-02-2005, 01:06 PM   #13
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Re: Mayo Clinic? Can we get an answer there?

Meggie: I almost always carried a "lyme only" notebook with me and even if I only wrote down a few important words in a confusing conversation, I was able to research or ask him later.

After a few visits, I would just do the "T" for timeout thing = "would you just "bottom line that info for me" or what's the most important thing I have to know - what can I possibly expect - when should I call/worry?

His secretary, Joanne is very good (they have a new part timer now in the afternoon, but Joanne has been with him a long time and can be a great help for quick basic answers)....don't hesitate to ask him, or slow him down when you're confused.

The first visit is always the hardest....so much to think about....His father was very ill with Lyme (undiagnosed) when he was starting to research it - if he hasn't already told you, ask him about his Dad & his heart problem....and again, don't hesitate to tell him to slow down! LOL


AND this board is a tremendous help.....use it whenever you want to!
Also, you may have noticed that I use a larger print for my posts.....the Lyme has affected my eyes, especially when I'm Herx'ing, so I find that making short paragraphs and larger type really helps me and everyone's been gracious about it.....

Last edited by outinthe_woods; 09-02-2005 at 01:09 PM.

 
Old 09-02-2005, 01:11 PM   #14
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Re: Mayo Clinic? Can we get an answer there?

Dear Meggie,

I so feel for you and your husband too. Actually I can relate to him more than you because I am in his boat. I went for 4 years with no direction but an MS diagnosis but nothing to back it up.

I now sit with what I believe is lyme but only 1 band positive. When I was on the IV I was responding slowly but mostly the small stuff like my hair stopped falling out, heart palps stopped, twitching stopped. Because of liver enzymes jumping from 40-737 we had to stop the IV after 9 weeks. How I wish I could go back.

Doxy did nothing and I am now on Samento and may follow the Healing Lyme protocol eventually but am following an herbalists recommendations for a while. Maybe by then some of the people on the protocols will have benefitted from it and shared their stories.

Like your husband I feel a definite slide backwards and think what if it is ALS. Jon, one of our fellow lymies has been diagnosed with that but firmly believes the lyme caused it and will fight more than any of us here to get rid of it. It is depressing to see yourself deteriorate and not know for sure if it is the meds or your condition. The tests for lyme stink so you don't even have that to fall back on. Maybe it is just self preservation but I choose to believe lyme not ALS. I want to take the positive approach.

As gerribear said the lyme is bad enough and the cure just about kills you sometimes. Not pleasant. I wish my husband would go someplace and have a good time even if it was just back home to golf but he won't. This puts an even bigger burden on me because I too feel I am holding him back.

You are doing the right thing going on your trip. Maybe the time alone will allow him to research even if it's just these threads and help him to take what little control he has left. Until he does that he can't get better.

I am now going the natural route only because the IV is out but I don't necessarily support natural over abx. I think that maybe the Stephen Buhner book would help him and maybe you should just set it in a highly visible place that he might pick it up and read it while you are gone.

If you like you can key in my board name and read my story from the first time I posted or anybody else's for that matter. We are all floundering in a cesspool of what I call modern medicine and the "plumbers" are on strike. If we don't help ourselves we are "flushed".

I hope you can help your hubby to see he is his own best advocate and at least try something. He will only get worse if he does nothing. I know he might get worse for a while if he does something too like the rest of us have but at least he will maybe be losing a few battles but winning the war.

Have faith and enjoy your trip. I'm 100% Irish. Maybe that's why I am so stubborn and won't give up this battle.

Betterdaysforme (Maureen)

Maybe while you're gone he would even consider asking a few questions of us hardened veterans. Does he know how to get into this site? If not leave him instructions.

 
Old 09-02-2005, 01:43 PM   #15
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Re: Mayo Clinic? Can we get an answer there?

Quote:
His secretary, Joanne is very good (they have a new part timer now in the afternoon, but Joanne has been with him a long time and can be a great help for quick basic answers)....don't hesitate to ask him, or slow him down when you're confused.
Another small world story - I grew up next door to Joanne! When my husband went to see Phillips for the first time he came back and said, "Oh yeah, the secretary knew you and said she used to baby sit you when you were little". She had noticed my name on his insurance card and asked if I was from Westchester NY...How weird is that? When I went with him to the next appt I was showing Joanne wedding pictures and totally embarrassing my husband...but it was pretty cool!

I definitely took notes from Philllips but you need to know short hand to get it all...he was very good on the phone when i called him to say we got a 2nd opinion that it was not lyme. He took the time to speak to me for a long time and I really appreciated that! He definitely mentioned his dad once when we were there b/c my husband had some heart issues but he didn't go too much into it...

 
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