by Bev Feldman
February 8th, 2010
by Bev Feldman
This is going to be a fairly long (but interesting, I hope!) read, so settle in.
It's an important post for me and I’m going to be as detailed and accurate as possible.
I know what it is like to have Lyme disease and what it's like to have a child very ill with Lyme. I know how it is dealing with doctors who are ignorant, arrogant, or both. I know about health insurer denials. I know about losing your friends and even family over the controversy about Lyme. ("Come on! How bad can it be? She looks great!") I know about giving up work and refi-ing the house and scuttling retirement to pay for treatments. Worst of all, I know what it's like to not be able to keep your child out of pain. So I would not jeopardize any Lyme patient or Lyme family by putting out half-truths or incomplete information. I know that Lyme patients and families do not need recreational ways of spending money: everybody's hard pressed.
This post is about our experience with the Medsonix machine. For the science behind the Medsonix, I recommend going to their website after you read this if you want to know more. www.medsonix.info I’m not qualified to explain the science behind it -- I work in TV. If you have questions, email them. They are very responsive.
So here is our experience.
Starting at age 13, after 9 months of misdiagnosis by 20+ doctors, Silver was diagnosed with Lyme disease by an LLMD. Years of hi-dose orals ensued, injections of bicillin, months of hyperbaric oxygen, countless therapies, alternative treatments, and finally IV ceftriaxone (generic for Rocephin) for an extended period of time. Before starting ceftriaxone, our daughter was too sick to attend school or do much. Her life consisted of traveling between the bedroom and the living room. She was too sick to go out, except for doctor appointments and too sick to do much of anything. (Doing the IV was a hard decision to make -- going with something invasive and possibly dangerous whose effects on a growing young woman have not been studied. But ceftriaxone turned out to be effective and not difficult to do or manage.) IV put our Silver back on her feet, and by the end of treatment, she was about 65-75% better, by her own assessment. That much improvement is HUGE when you've been very sick for years on end!
But good as that is . . . it's not good enough.
So we continued doing various therapies in the hopes of bringing down the remaining symptoms: mainly a 24/7 headache and relentless fatigue. We wanted to get her across the finish line healthy and pain free. She had plateaued.
About 4 months ago I got a phone call "out of the blue," from Bob Ramos, who had seen this website. He represents the "Medsonix Therapy System," which is registered with the FDA.
Bob said the Medsonix is used for pain reduction (I'm all for that), reducing inflammation (I'm for that too), and increasing blood flow (I'm very much for that). Bob had my attention because these outcomes represent the possibility of improving the quality of life for certain Lyme patients.
Treatments with the Medsonix are non-invasive. It's acoustic (audio waves), and all you do is sit in a room around the machine while it's running. Standard treatments are a half hour. Bob said a Lyme patient in the Big Bear area of Southern California was making the trip to Las Vegas (closest Medsonix to us; the other is in Naples, FL), and was having amazing relief from Lyme symptoms. So after talking with Bob, I called her, and she went on and on about the Medsonix treatment and how it had improved the quality of her life. But you know how it is... maybe she's exaggerating or is nuts or is confusing what the machine is doing with another therapy. (You get cautious when you've been burned -- as most of us have.)
Bob said that they wanted to have the Lyme community know about the Medsonix because they know they can help, and made me an offer: if my daughter would get herself to Vegas, they would treat her at no charge, and if she felt improvement from it, would I share our experience with other Lyme patients?
I didn't have to think too long or too hard about it.
Here's the deal: NOTHING other than IV has significantly reduced her symptoms. And our experience has been that nothing helps much. And we’ve been at this for many years. Many years. We've been everywhere and seen many of the best Lyme specialists in the US! Even though she is much better from the IV, the reality is that she lives with daily pain but has developed strategies for sucking it up, and has to use some form of pain meds pretty much every day. This is not what you want for a young woman. What her Dad and I want for her is to be out of pain and symptom free.
So I said: "Bob, if Medsonix treatments can bring DOWN my daughter's pain and bring UP her energy, then I will HAPPILY tell our story."
But frankly, I didn't have a lot of hope about this, and I kind of filed it away under "Check It Out Later" and we didn't take Bob up on his offer right away because no one was going to Vegas and frankly, we weren't persuaded enough based on one testimonial to take a special trip there. A couple months later it was near her birthday, (her 21st), and her boyfriend wanted to take her to Vegas. My husband remembered the conversation I'd had with Bob and suggested to my daughter that she might want to give the Medsonix a try. She agreed to do it. I dug up Bob's number and got it set up.
I told Bob that I wouldn’t be willing to recommend the Medsonix to anyone on the basis of just one treatment, and that there would have to be very good results from the first treatment or there wouldn't be a second treatment. But if we DID get good results from one treatment, we'd be back. (In retrospect, I realize it was kind of a high bar.) He was fine with that. We were looking for either obvious pain relief and/or increased energy, and I was not going to be the judge -- it had to be my daughter. She's living with Lyme. She’s living in pain. She’s got to be the one who says she’s feeling better or not.
So here's what happened.
First trip to Vegas November 19-22, 2009 (3 1/2 hour treatments):
She and her boyfriend drove from LA and arrived at Medsonix around 2-3pm. The office was very cold, and like many Lyme patients, her body temperature tends to run below normal. She came in cold and was now sitting in a cold room (an air conditioning problem). Once in the room, the machine is turned on and you sit by it while it makes an annoying acoustical tone, but each patient wears headphones and listens to music. So after the treatment, Al Cassone, the inventor of the Medsonix, asked her how she felt, and she said, "The same." "Did you feel anything during the treatment?," he asked. She said she felt a tingling sensation in her mouth, similar to when a limb "falls asleep." That was all. "Are your hands warmer?" he asked. She felt her hands and realized they were very warm! She was "very surprised" because, "My hands and feet are always cold." Al said, "Next time put your feet up on a footstool during the treatment."
Then she and her boyfriend went to find their hotel. He navigated and she drove. It was while driving that she realized that her mood was better, and she felt "lighter", meaning that she had less pain. They took a nap at the hotel and then walked out to explore Vegas. She usually has to be asleep no later than midnight, or the next day is a disaster, but they were out until 1 or 2am and had a wonderful time! They were up at 8am and went for her next Medsonix treatment at 10am.
She walked in feeling better than she had the day before. She was more relaxed and a bit sleepy during the treatment. She told her boyfriend that she wanted to go to Hoover Dam because her Dad had shot portions of the movie at the Visitor's Center and she wanted to see it. She drove. Somewhere along the way she called us and reported that her headache was down and her energy was up. They took the tour of the dam, which included going down in an elevator. As the elevator descended the pressure changed, and her head pain immediately increased, and her energy went way down. Her boyfriend drove them back to the hotel, and they showered and rested. After her rest, her pain diminished (meaning it was now less than when she had initially arrived at Medsonix) and she felt MUCH better and her energy was good. They went out, walked all over Vegas ("miles" I am told), went to a Cirque show, then out to dinner, followed by walking a couple of miles more through the humongous casinos. Got to bed at 1 or 2am. Plus she had 2 alcoholic drinks (no comment), which she could not have done normally without getting nauseous after one sip.
Next day, third Medsonix treatment. She walked in feeling the best she had felt in years, and left the treatment with increased "lightness". Her explanation of "lightness" is that "When you live with pain for so long, you don't realize how much it weighs on you." She and her boyfriend shared the 4.5 hour drive home to LA. "Feeling the best she had felt in YEARS???" Unbelieveable!!!!
Over the next 3 weeks, it was like living with a different person.
We could SEE her energy, and it was remarkable. About her headache, we have to ASK, and we did. The reports were incredible. Energy (obvious to the eye) was way up, but the headache was waaaay down! She was doing more than usual, by a huge factor, including pouring herself into a design class at Art Center School of Design (she got an A!). I have to say; her Dad and I were thrilled. It really was like living with a different person.
Second Medsonix treatment session Dec 10-13 -- 4 1-hour treatments:
On the 10th, she had been feeling so good that she thought that if a half hour treatment was good, then an hour treatment would be twice as good. Ah, young people. After the 1 hour treatment she felt "ok" but not as good as she had after the prior treatments 3 weeks before. Next day she did another hour treatment. After that one she started to feel a little better afterwards. Dec 12th she had another hour session, and then she and her boyfriend drove up to Mt. Charleston. Her energy was down, and she was not feeling well, with a lot of nausea. They stayed "in" that night. Dec 13th she had another 1 hour treatment and she felt a little better, but she was really tired. And then the next day, back home, she "bottomed out." She had severely reduced energy, and the headache had climbed back up into the Red Zone. She was a train wreck for 3-4 days. Her Dad and I had that same old feeling of disappointment in our stomachs. Damn. What we didn’t know and couldn’t know was whether she was having a Herx or if the treatments were making her worse.
The following day she felt better, and the day after that she felt GREAT! Energy back up, headache down. She was able to do a lot of stressful work in a TV studio (a real "screamer" of a director) for days and showed no signs of slowing down. We now attribute the worsening of symptoms to being a Herx.
Lesson learned: go easy on the 1-hour treatments. More is not necessarily better. And, because you are sitting there just listening to music, it doesn't mean that you aren't getting a powerful medical treatment. You are.
In between the December and January sessions in Vegas, she was much improved, however her headache spiked more frequently, and her energy did come down some.
Third Medsonix session -- Jan 12-14, 2010 -- 3 :30 min & 1 1-hour treatment:
This time she drove to Las Vegas with her Dad, who did the Medsonix treatments with her. He had broken his neck in 1993 (I swear I didn't do it) and had fusion surgery. He has good rotation for a fused guy (thanks to physical therapy every month-- $$$), but it's not normal rotation. He reaches a certain point and it's painful. So the two of them did the treatments-- one 30min. the first day, two 30mins. the second day, and one 1 hour treatment the third day. She was not feeling great when she arrived, and after the first session she noticed that she felt much better and remained that way.
My husband noticed during the first treatment that his neck became more painful but right after leaving the building the pain was greatly diminished and he had increased rotation! He was VERY surprised. And happy!
We are nearly two weeks beyond the last treatment and she's feeling VERY good, and has plunged into another class (package design) at Art Center. Headache is reduced, energy is very good. Muscle testing from our fabulous Chiropractor in Montrose revealed that the inflammation in her head is at the lowest level since this illness began. Yessss! (This guy has been spot-on the whole time.)
For Tom the relief in his neck has lasted. He said that doing the Medsonix was "parallel to getting physical therapy." Clearly he has benefited from the treatments. I live with him, I can attest to it as well.
So what's the bottom line from Medsonix treatments?
Significant symptom reduction in a long-term Lyme patient-- an intractable headache moved down the pain scale and energy brought up into a normal range, due to the Medsonix treatments, resulting in very happy patient and very happy parents. It has "lifted" her and brought her baseline up, though within the new baseline there are fluctuations. I did not expect to be writing this post, and I'm thrilled that I am. She's MUCH better!!!!
How long do the treatments "last" for?
I can't say. It's probably an individual thing. She's had three sessions consisting of 3-5 treatments each, and since the first Medsonix she has been living with less pain and more energy with the exception of when she did the series of 1-hour treatments, though she "came back up" after 4-5 days.
Could it be a cure for Lyme?
Nothing makes me think it kills bugs. I think a better way to think about it is: can it improve quality of life by bringing down pain quickly and have it last for a while? The answer over here at Chez Feldman is that it does.
Might the improvements "stick" for longer periods of time after more treatments?
I wish I could say that they do, but we don't know. However, the more Lyme patients that use the Medsonix, the more data we can gather. Silver will continue to go to Vegas on a regular basis and I will post updates.
For patients who mention my name, or Silver's name, or LymeSucks.org, they will give you a substantial discount: normally a package of 4 treatments is $399, but for you it will be $299. The more Lyme patients that go, the more data that can be created and analyzed and we'll see if the Medsonix has some consistency with Lyme patients. Also, rooms in Vegas are dirt cheap. We can even make a few recommendations. Our preference are ones with kitchenettes.
Anyone who wants to email me with questions or comments about this, you can track me down at firstname.lastname@example.org. I'm also more than happy to talk to people on the phone, but remember I'm on Pacific time. 818-790-7418.