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Old 03-02-2007, 12:29 PM #1 (permalink)
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Default ALS Lyme connection

Has anyone research the ALS connection to Lyme Disease and Rocky Mountain Chronic Disease Clinic in Colorado. They claim to have success with intervenious antibiotics
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Old 03-02-2007, 04:04 PM #2 (permalink)
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Default Lyme Disease and ALS

Hi Lonny,

I can give you some first hand information about RMCDS because I have been on their therapy since December of 2006.

But I need to give you a bit of background on me. I have been diagnosed with PMA, which is similar to ALS but without any upper motor neuron involvement (to date I’ve had no brisk reflexes, spasticity, Babinski sign). There is an excellent description of PMA at the beginning of the PMA section on this web site.

I decided to work with RMCDS because along with my ALS/PMA symptoms I had constant headaches, whole body muscle aches, and most of the joints in my body ached constantly too. Within a month of starting on ceftriaxone IV, my headaches, muscle aches, and joint aches went away and have not returned. Elimination of these symptoms was like a new lease on life. HOWEVER, continuing IV antibiotic therapy has done nothing to slow the progress of my ALS symptoms. A year ago I was still able to walk short distances (100 ft. or so) with the aid of a cane, but now I am mostly confined to the use of a wheelchair (I can still do 10 to 20 steps with a wheeled walker, but that’s it).

I don’t want to give any false hopes here. My personal belief is that RMCDS is not the “cure all” for PALS. However, I do believe that there is some percentage of people (probably fairly small) that can have the progression of their ALS (as a result of Lyme or some other infection/s) symptoms reversed, stopped, or slowed, provide that Dx and start of therapy begin early on (before gross loss of neurons and muscle).

Ok, so if I’m still loosing ground on the ALS/PMA side, why do I continue with the antibiotic therapy? I’m to the point where I have no false hopes about getting the train stopped, but I want to continue to contribute (as a guinea pig) in RMCDS’s efforts to figure out what role/impact IV antibiotics truly play.

I hope that this has helped,

Edwin

PS: Here is a URL to a pdf of slides used by RMCDS when they gave a presentation at ILADS (International Lyme & Associated Diseases Society) conference last October. It is posted on Charles McPhee’s (The Dream Doctor?) website. McPhee has been diagnosed with ALS.
http://www.dreamdoctor.com/radio/ALS%20and%20Lyme.pdf
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Old 03-06-2007, 06:52 PM #3 (permalink)
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Default Thanks for the info

Thankyou for your information. I was also wondering how you have been tolerating the antibiotics? Have you had any adverse reactions or difficulties? Have you had any problems with the IV port? And, have you been able to get your insurance carrier to cover the treatment? And lastly, Did you ever show a positive on the Lyme D.WB test?

I would also like to say that I am very happy that you have found relief from some of your symptoms. I really appreciate your letter!
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Old 03-10-2007, 06:20 PM #4 (permalink)
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Default ALS, Lyme Disease, and RMCDS

Hi Lonny,

I apologize for the delayed response. One day last week I turned my computer on, it started to boot up, then: snap, burnt electronics smell, dead machine. Having been in the electronics/computer field for the past 39 years, I had the expertise to deal with the situation, but computer stuff just doesn’t interest me much any more, so I had trouble getting motivated to do something about it. But I finally got my nose out of a book and after replacing a dead power supply, here I am.

I will do my best to answer your questions, but first I have a few (off the Lyme and RMCDS subject) things to say. You can tell by the count that I’ve done no real posting on this website. That’s because (before your question about RMCDS), I felt that I had nothing really useful to contribute. With that said I want you to know that I’m so sorry that you have been diagnosed with ALS and you even have a need for this site. However, please know that the regular contributors to this site are a wonderful, knowledgeable, caring, and extremely helpful group of people that will help/support you in any way that they can (they are always in my thoughts and prayers).

Now to answer your questions…

I had a Groshong CV Catheter implanted in early December of 2005. I have had no problems whatsoever with the catheter. I don’t know if I am an exception, but I can tell you that I follow the rules about its care to the letter. Before and after every infusion I do a 10ml flush of saline solution and I change/replace the needleless connector (at the end of the catheter weekly.

I’m sure that you know that insurance can be a tricky thing. I have been fortunate in that my insurance covered the cost of the catheter installation (a pleasant surprise to me) and continues to cover most of the costs in regards to the infusions. For a typical 30 day supply of infusions I receive thirty vials of ceftriaxone (in powder form), for which I have a $10.00 copay. I receive thirty 100ml bags of saline solution, for which I have a $10.00 copay. The pharmacy that I deal with attaches the vials of ceftriaxone to the bags of saline solution for me at no charge, so when I am ready for the infusion all I have to do is break the internal sealed connection between the two, mix the powder into the solution and I’m ready to go. I receive sixty 10ml saline flushes (one for before and after each infusion) for which I have a copay of $10.00. So, you can see that for the drugs and saline solution I wind up with a total copay of $30.00. However, there are still a few things needed that my insurance does not pay for. The needleless connector needs to be replaced weekly at a cost of $3.00 a piece ($12.00 / month). Also, you need an IV solution set for each infusion (goes between you ceftriaxone setup and catheter, allowing you to control the rate of infusion). Thirty of these cost me $77.63. So, you can see that even with insurance it costs about $120.00 a month for me to do this (a bargain in this day and age).
Oops, almost forgot that you do need to buy alcohol wipes and antibacterial soap too, but these are minor expenses. And one more thing before I move on… this scenario is for infusion of one antibiotic. At present I am still infusing ceftriaxone (low dose maintenance) along with two other antibiotics to deal with Chlamydophia Pneumonia (another bacterial infection), for which I tested positive (for more information, if you are interested you can check this out on Wikipedia or get detailed information at CPnHelp.org). The two other infusions doesn’t triple my out of pocket costs because two of the infusions are done back to back, but it does double them to around $240.00 a month.

Other expenses to consider… RMCDS does not deal with insurance. It will be up to you to file with your carrier (mine has covered about 70% of the cost of office visits but none of the cost of telephone consultations).

I did not test positive for Lyme Borreliosis, but I did test positive for one of the typical co-infections (Bartonella) that go along with Lyme, so we went under the assumption that the Lyme bacteria was present also, but undetected. Tests were completed by Igenix in CA (this lab doesn’t deal with insurance. They send you what will have to file with your insurance company). If you’ve done your homework, you know how iffy the Lyme tests are. FYI: my reasoning for going forward with the treatment was because I had so many of the chronic Lyme symptoms.

Regarding tolerating the treatment… I did have a reaction (herxed) after about six weeks of therapy (flu like symptoms for about five days), but have had no trouble since that time. RMCDS’s philosophy has changed since I started with them. They used to start fairly aggressively with dosage, but have learned that low and slow is better. I have had occasional bouts of diarrhea, but it’s from when I forget to take acidophilus (chewable form recommended by RMCDS) to counter-act the effect of antibiotics on the digestive system.

I know that this is a lot to digest, but I wanted to be as up-front with you as possible. It’s a real shame that answers to the whole ALS thing aren’t further along than they are… but nothing really happens in this world without huge amounts of money/funding or the potential for making a whole bunch more (money). I bring this up because at RMCDS, strange as it may seem, I don’t believe that it’s about the money. At 65 or so years, Dr. Martz could be off fishing somewhere, but since he had all of the ALS symptoms (was diagnosed with ALS by a leading neurologist), and was restored to health by antibiotic therapy, he opened RMCDS in the hope of helping others (and giving back to the world community).

The sad part is that antibiotic therapy is known only to be a help for those with ALS symptoms that are actually being impacted by some kind of bacterial infection…

I hope that I have helped a bit more.

Be well,

Edwin
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