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Old 03-10-2007, 06:20 PM #4 (permalink)
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Join Date: 2006
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Join Date: 2006
City: Elbert
State: Colorado
Country: US
Diagnosed: 05/2005
Posts: 2
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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 doesnít 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 Iíve done no real posting on this website. Thatís 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 Iím 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 questionsÖ

I had a Groshong CV Catheter implanted in early December of 2005. I have had no problems whatsoever with the catheter. I donít 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.

Iím 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 Iím 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 onÖ 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 doesnít 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 considerÖ 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 doesnít deal with insurance. They send you what will have to file with your insurance company). If youíve 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 treatmentÖ 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. RMCDSís 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 itís 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. Itís a real shame that answers to the whole ALS thing arenít further along than they areÖ 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 donít believe that itís 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 infectionÖ

I hope that I have helped a bit more.

Be well,

Edwin
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