Familiar with Shea Med. Center-or any other Lyme Disease Treatment Centers in AZ?

[happyWImom]

What the dr.'s originally thought were syrinx's on dd's spine, they now say aren't.  They do think that she has a demyelinating lesion on her spine.  After looking into that, and going over symptom's she's had for years, we suspect Lyme's.  I have heard about Shea Medical Center's aggressive, integrative treatment for Lyme, and was wondering if anyone is familiar with them.  We don't live in AZ, but I have friends there.  There is a facility here, and I am investigating them, but I think there approach isn't as quick, or aggressive.

 

Thanks, in advance.

[Catwoman]

I am not familiar with it, but I will give your thread a bump in the hope that someone will be able to help. Many of us have had Lyme Disease, so I'm sure you will get some recommendations.

 

I have had Lyme three separate times, but my local doctor was excellent at diagnosing and treating it, so I am incredibly fortunate to have never needed the kind of intense treatment your dd may need. Unfortunately, that also means I don't have any info for you. I have heard, however, that the Mayo Clinic is NOT a good place to go for Lyme, even though they are amazing for other things.

 

I hope you find the right place, Tammi, and that your dd makes a complete recovery. :grouphug:

[happyWImom]

I am not familiar with it, but I will give your thread a bump in the hope that someone will be able to help. Many of us have had Lyme Disease, so I'm sure you will get some recommendations.

 

I have had Lyme three separate times, but my local doctor was excellent at diagnosing and treating it, so I am incredibly fortunate to have never needed the kind of intense treatment your dd may need. Unfortunately, that also means I don't have any info for you. I have heard, however, that the Mayo Clinic is NOT a good place to go for Lyme, even though they are amazing for other things.

 

I hope you find the right place, Tammi, and that your dd makes a complete recovery. :grouphug:

Thanks, Cat.  I'm glad you were able to get the treatment you needed.  Dd was tested a few years ago, just the basic test.  Negative.  We had also taken her to a ped. rhumatologist due to joint pain.  They might have tested for Lyme then, too.

 

I've heard the same thing about Mayo, unfortunately.  We also have a wonderful University Hospital near us, and I believe it's the same thing with them.  That's why I'm looking elsewhere-anywhere, really.  Distance isn't an issue.

[Nemom]

Been treating for Lyme since 2011.  I've never heard of the clinic you mention.  We have been receiving treatment through LLMD's (Lyme Literate Medical Doctors).  We have had to travel outside of our state to receive the treatment because there is no one local. 

 

You can try posting here: http://flash.lymenet.org/scripts/ultimatebb.cgi under "seeking a medical doctor". You might be able to find someone in your area depending on where you live.

[Spryte]

Been treating for Lyme since 2011. I've never heard of the clinic you mention. We have been receiving treatment through LLMD's (Lyme Literate Medical Doctors). We have had to travel outside of our state to receive the treatment because there is no one local.

 

You can try posting here: http://flash.lymenet.org/scripts/ultimatebb.cgi under "seeking a medical doctor". You might be able to find someone in your area depending on where you live.

That was going to be my suggestion.

 

You need an LLMD. If you're going to go to AZ, off the top of my head - I'd choose Dr Fry. But posting at Lymenet will give you a better idea of LLMDs closer to you. You need a member of ILADS. :)

[happyWImom]

Been treating for Lyme since 2011.  I've never heard of the clinic you mention.  We have been receiving treatment through LLMD's (Lyme Literate Medical Doctors).  We have had to travel outside of our state to receive the treatment because there is no one local. 

 

You can try posting here: http://flash.lymenet.org/scripts/ultimatebb.cgi under "seeking a medical doctor". You might be able to find someone in your area depending on where you live.

Thanks, I did join & post on the site!

[Nemom]

Thanks, I did join & post on the site!

 

the site isn't as active as it once was. Many people have moved on to other places but there are still a lot of very knowledgable individuals. Good luck to you and your Doctor.

 

Do you have any idea how long the clinic you inquired about has been around. Quick google search and it appears to me to possibly be fairly new?????

[happyWImom]

the site isn't as active as it once was. Many people have moved on to other places but there are still a lot of very knowledgable individuals. Good luck to you and your Doctor.

 

Do you have any idea how long the clinic you inquired about has been around. Quick google search and it appears to me to possibly be fairly new?????

When I googled lyme disease treatment clinic/center Shea Medical Center came up, and their site has a huge informational page under treatment.  I watched a video they have that gives lots of info. on Lyme itself, a paper a doctor from the clinic has written, etc...  But, I am still trying to see if they have a LLMD.  Or a recognized one, that is.  

 

We have good friends in AZ, that's why I also considered it.

[Catwoman]

Just giving your thread a bump! :)

 

I hope you find a good place. There are a lot of quacks out there... and don't even get me started on the idiots who act like Lyme is no big deal. So many people are terribly ill because they trusted medical "professionals" who didn't have a clue.

[Lizzie in Ma]

You mentioned distance isn't an issue, our LLMD is Dr. Raxlen in NYC, he is a founding member of ILADS.  We adore him.  I havn't heard anything about the center you speak of but I have heard pretty bad things about places like it.

[Katy]

I'm not familiar with the treatment center, I just wanted to mention that last week I read an article that Claritan, the antihistimine, kills lyme disease.  It needs to go through more trials before it's marketed, but it might be the first drug specific to lyme disease to come to market.  Apparently it starves the bacteria.   It's very inexpensive. I think I bought a year's worth of generic Claritan for less than $20 at Sam's Club a few years ago.  I doubt most physicians would recommend it at this point, but if I thought someone had chronic lyme I'd give it a try.

 

http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

[happyWImom]

I'm not familiar with the treatment center, I just wanted to mention that last week I read an article that Claritan, the antihistimine, kills lyme disease.  It needs to go through more trials before it's marketed, but it might be the first drug specific to lyme disease to come to market.  Apparently it starves the bacteria.   It's very inexpensive. I think I bought a year's worth of generic Claritan for less than $20 at Sam's Club a few years ago.  I doubt most physicians would recommend it at this point, but if I thought someone had chronic lyme I'd give it a try.

 

http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

I just heard about this, too!  I take Claritin D constantly during spring & fall.

[happyWImom]

bump

[Lizzie in Ma]

I'm not familiar with the treatment center, I just wanted to mention that last week I read an article that Claritan, the antihistimine, kills lyme disease.  It needs to go through more trials before it's marketed, but it might be the first drug specific to lyme disease to come to market.  Apparently it starves the bacteria.   It's very inexpensive. I think I bought a year's worth of generic Claritan for less than $20 at Sam's Club a few years ago.  I doubt most physicians would recommend it at this point, but if I thought someone had chronic lyme I'd give it a try.

 

http://lymedisease.org/news/lyme_disease_views/claritin-lyme-balf.html

 

It was a promising in vitro study that needs a lot more research.  It isn't, yet, a cure of any kind.

[kewb]

You mentioned distance isn't an issue, our LLMD is Dr. Raxlen in NYC, he is a founding member of ILADS. We adore him. I havn't heard anything about the center you speak of but I have heard pretty bad things about places like it.

That is who we see. We love him, too.

[Lizzie in Ma]

That is who we see. We love him, too.

 

Very cool Kathy!  He is such a blessing.  We go back in a couple of weeks again.

[kewb]

Us, too. How funny. Who knows, maybe we will meet up in the waiting room.

[happyWImom]

You mentioned distance isn't an issue, our LLMD is Dr. Raxlen in NYC, he is a founding member of ILADS.  We adore him.  I havn't heard anything about the center you speak of but I have heard pretty bad things about places like it.

We've been gone, so I just came back to this to day.  I looked up your doctor & am impressed with his treatment plan.  

 

My dd did have an appt. with a Dr. Coleman & Dr. Meress, who are both LLMD's, and Dr. Meress was just appointed to some position on the ILADs board, I believe.  I do feel comfortable with him, but am open.  They say that based on their clinical diagnosis of dd, she has it, but they took blood for a bunch of tests, and we are waiting on the results.  In the meantime, they started her on antibiotics as well as a bunch of supplements and drops.  Nothing was mentioned about IV treatment or doing any type of MRI, etc.., though.  I am thinking because they are waiting for test results.  I want to make sure we cover all bases, which is why I hope they do followup with an MRI (based on dd's last one).  It's so overwhelming.

 

Have you all responded well to treatment?  I read some of these blogs and feel so scared.  I'm trying to not let myself go there at all, because I know I have to keep it together for everyone.

[kewb]

My husband is responding to treatment. Not as quickly as he would like but there has been improvement. He has a long road to recovery in front of him. They suspect he has been infected and untreated for 30+ years.

[Catwoman]

We've been gone, so I just came back to this to day. I looked up your doctor & am impressed with his treatment plan.

 

My dd did have an appt. with a Dr. Coleman & Dr. Meress, who are both LLMD's, and Dr. Meress was just appointed to some position on the ILADs board, I believe. I do feel comfortable with him, but am open. They say that based on their clinical diagnosis of dd, she has it, but they took blood for a bunch of tests, and we are waiting on the results. In the meantime, they started her on antibiotics as well as a bunch of supplements and drops. Nothing was mentioned about IV treatment or doing any type of MRI, etc.., though. I am thinking because they are waiting for test results. I want to make sure we cover all bases, which is why I hope they do followup with an MRI (based on dd's last one). It's so overwhelming.

 

Have you all responded well to treatment? I read some of these blogs and feel so scared. I'm trying to not let myself go there at all, because I know I have to keep it together for everyone.

Your dd will be OK. Really.

 

It may take a while and it may take some experimentation with treatment, but she will be OK.

 

Lyme is so scary because the symptoms are so widely varied, and also because you can have a symptom today but not tomorrow, and then three days from now, it's something different. You can start to feel like you are going crazy.

 

The main thing is that she is seeing experts in the field and they are doing tests and getting her started on medication. I truly believe she will be fine, but I don't think it will happen overnight. It might even be discouraging for a little while because some symptoms go away pretty quickly, but others take much longer, so some people seem to recover more quickly than others, even when Lyme is still active in their system.

 

It is scary and frustrating and worrisome, but the good news is that she is being diagnosed and treated so she can get on the road to recovery instead of continuing to get worse.

[Catwoman]

My husband is responding to treatment. Not as quickly as he would like but there has been improvement. He has a long road to recovery in front of him. They suspect he has been infected and untreated for 30+ years.

I'm so glad he is responding to the treatment! :hurray: I'm sure it will take quite some time for him to recover, but at least he is finally headed in the right direction.

[Little Women]

I've been going to the Sound Clinic in Denver. They have a very solid reputation, and everyone I've known of who has gone there has been very happy with it.     It was recommended to me by a friend, because I've had Chronic Fatigue Syndrome for many years.   There is a big overlap of symptoms, and they suggested that I get looked at to see if there could be Lyme involved.    The treatment given there is very alternative, but it does seem to be helping me a lot.   

 

I don't live in the Denver area, but my sister does.    When I told her I was going there to see a Lyme dr, she said, "Oh, that's good.  Even if you don't have Lyme, he will be able to help you!"   I pointed out that I had not even told her yet who I was going to see!    She replied, "If you are coming to Denver to see a Lyme dr, there is only one dr you are coming to see.  He's helped 3 of my friends a lot!"     She had to check with her friends to see what his name was, and sure enough, it was the same one!    

[happyWImom]

Your dd will be OK. Really.

 

It may take a while and it may take some experimentation with treatment, but she will be OK.

 

Lyme is so scary because the symptoms are so widely varied, and also because you can have a symptom today but not tomorrow, and then three days from now, it's something different. You can start to feel like you are going crazy.

 

The main thing is that she is seeing experts in the field and they are doing tests and getting her started on medication. I truly believe she will be fine, but I don't think it will happen overnight. It might even be discouraging for a little while because some symptoms go away pretty quickly, but others take much longer, so some people seem to recover more quickly than others, even when Lyme is still active in their system.

 

It is scary and frustrating and worrisome, but the good news is that she is being diagnosed and treated so she can get on the road to recovery instead of continuing to get worse.

Thanks for this.  I feel like I need the hope, because I've made the mistake of reading a lot of Lymie blogs & similar things where people have/are going through absolute hell (can I swear on here? :001_smile:), and I lay in bed every night in a panic, thinking about my poor dd.  Hearing positive outcomes is very encouraging.