Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Less than an hour of sleep last night - I was up rewriting the letter to the Medicaid HMO, not happy with any of the drafts my sister and I produced. Got it down to three and half pages of clear, blunt language. The tone is as good as I can get it, makes no real assumptions about the motives of the people I'm addressing, good or bad. No iron knuckles, no pulled punches. Boy do I hate having to work so hard at saying the obvious. Still, it has to be done. When the response of the medical community to your illness is incoherent, it forces you to be very precise in asserting your right to meaningful care. Oh well, so I'm even loopier than usual when the neurologist sees me. I just am dreading the 5+ hours of driving, round trip, it will take to get us there and back. My BP's have been shooting up despite the medication. Gee, I can't think why, not like I've been subjected to any gratuitous stress? I think I may explore supplementing the ARB at a reduced dose with an ACE inhibitor, a class of drug that still has yet to be outperformed in the treatment of heart failure, which Cheney's latest missive suggests might be a more relevant model than we've realized. At least I don't have to worry about hearing bad news from the neurologist, at this point any clarification will be an improvement over the disturbing murk that I've been plunged in since that last brain MRI. As an empowerment exercise, writing the complaint to my Medicaid HMO has worked pretty well. I don't have that anxious feeling that usually accompanies seeing a new doctor. OK, time to shower, take morning pain, anti-seizure and BP meds, apply cold slimy testosterone gel to belly and go off to meet the day. Can I get you anything while I'm out? Agent Scha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Hey, Agent Scha, My best wishes to you on all of this. You are so eloquent and clear in your posts here, I can imagine that you've written a powerful letter to them. Warm regards, Laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 > OK, time to shower, take morning pain, anti-seizure and BP meds, > apply cold slimy testosterone gel to belly and go off to meet the > day. > > Can I get you anything while I'm out? > > Agent Scha , why are you on testosterone if you're still a young guy? I know hormone supplementation is popular among certain alternative docs but I am suspicious of it and think it is potentially dangerous. In addition, I don't think experimenting with the arbs is a good idea and haven't seen evidence of much success with that in lyme. Cheney's point about them dampening inflammation in way swe don't understand is well taken. We have enough evidence from other drugs that do that-- such as cox-2, or anti tnf factor drugs, in which we see elevated death rates from heart disease, stroke and cancer, to see how unwise it is to tamper with a whole inflammatory pathway that mother nature designed. If you know you have lyme, you probably also have a california strain of babesia, it sounds like antibiotics and antimalarials would be a good idea and otherwise lots of nutritional support. I don't mean to butt in here and sound obnoxious or sound like I'm prescribing over the internet, if so, I apologize. I just worry when people add all kinds of experimental things into the mix. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Jill, I'm not , but I remember him saying he has a known serious testosterone deficiency. Also, I believe he said he is taking the ARB for high blood pressure. As you may have noticed, ( Agent Scha) is not a Benicar fan otherwise. So I wouldn't worry that is experimenting in these areas. - Kate D. On Thursday, April 14, 2005, at 03:45 PM, jill1313 wrote: > , why are you on testosterone if you're still a young guy? I know > hormone supplementation is popular among certain alternative docs but > I am suspicious of it and think it is potentially dangerous. > > In addition, I don't think experimenting with the arbs is a good idea > and haven't seen evidence of much success with that in lyme. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Hi, . For what it's worth, Dr. V. said in his talk at the recent OHM meeting that it is best to apply testosterone to the skin in the genital area, rather than to the skin on the belly. He said that the same holds for women using transdermally applied female hormones. The cells there will absorb it better, and will not decrease their ability to absorb it over time. Dr. has about 20years experience with transdermal bioidentical hormone use. I realize that the package insert in AndroGel says differently. Rich > > OK, time to shower, take morning pain, anti-seizure and BP meds, > apply cold slimy testosterone gel to belly and go off to meet the > day. > > Can I get you anything while I'm out? > > Agent Scha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Hi , I hope that the neurologist treats you with the tremendous respect and care and clarity that you deserve. Sue , Upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2005 Report Share Posted April 15, 2005 Sue, I will be here if you and your daughter are coming down in about 10 days. I'm going to aconference this weekend so will be around the rest of the month. > Hi , > > I hope that the neurologist treats you with the tremendous respect and care > and clarity that you deserve. > > Sue , > Upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 In a message dated 3/10/2006 9:32:36 A.M. Eastern Standard Time, jaynbeth@... writes: I placed a call to my Neurologist today to have her write me a prescription for LDN. A couple week ago she told me she'd consider it if I really wanted to try it. Hopefully she'll follow through. Wish me luck!Thanks, Best of luck to you, both in obtaining the script and in good results in using it. I know you've been researching it for some time, so you know you have to give it a fair trial period. Keep us posted. Be well Arlene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Oops. Typo heaven in my last post. I meant it's cheaper for me to pay out of pocket. Wish me luck on my typing skills as well, Lol. On Mar 10, 2006, at 9:23 AM, Vaccaro wrote: > I placed a call to my Neurologist today to have her write me a > prescription for LDN. A couple week ago she told me she'd consider > it if I really wanted to try it. Hopefully she'll follow through. I > also talked with Irmat Pharmacy in NY and gave them my info. Turns > out there's a $50 co-pay through my insurance company (Ouch!) It's > cheaper not to pay out of pocket. $35.50 for (30) 3 MG capsules. > Wish me luck! > > Thanks, > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2006 Report Share Posted March 10, 2006 Skips pharmacy in Boca Raton-$60 for 90 capsules of 4.5 mg LDN including shipping. A lot of times he even includes a bag of candy with it. Skips Pharmacy 561-218-0111 Re: [low dose naltrexone] Wish me Luck Oops. Typo heaven in my last post. I meant it's cheaper for me to pay out of pocket. Wish me luck on my typing skills as well, Lol.On Mar 10, 2006, at 9:23 AM, Vaccaro wrote:> I placed a call to my Neurologist today to have her write me a> prescription for LDN. A couple week ago she told me she'd consider> it if I really wanted to try it. Hopefully she'll follow through. I> also talked with Irmat Pharmacy in NY and gave them my info. Turns> out there's a $50 co-pay through my insurance company (Ouch!) It's> cheaper not to pay out of pocket. $35.50 for (30) 3 MG capsules.> Wish me luck!>> Thanks,>> >>>> Quote Link to comment Share on other sites More sharing options...
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