juliegee Posted July 30, 2009 Report Share Posted July 30, 2009 Hey All-We just got back from Johns Hopkins where we saw Mack's doctor, Peter Rowe. He is a pediatrician who specializes in chrinic fatigue/ANS. He had a bunch of new ideas for Mack that we are excited to try. Some of the new drugs that we will try are clonodine, provigil, straterra, and minocycline- yes minocycline!Dr. Rowe has found that a substantial number of his patients may have had underlying lyme disease infections- even though they don't initially test positive for lyme disease. Many of you are aware of a huge controversy between mainstream docs who don't recoginze "hidden" lyme disease and lyme docs who treat regardless of test results- if the clinical picture fits. Well, Dr. Rowe has had enough success with relatively low doses of minopcycline with many of his patients. He isn't sure why it helps or what it's helping, BUT it's benign enough to try in most patients. He guesses that it's addessing underlying inflammation or an infection similiar to lyme that we can't currently test for. Mack tries each new drug one at a time so it may be a month or so before we get to the minocylcline, but I'll be sure to report his results. Some patients initially get worse and then show great improvement on the minocycline. I began taking a low dose of doxycycline for rosecea about a year ago. It is in the same family as minocycline. It not only treated ny rosecea, but over all made me feel much better- so I am one of those patients that Dr. Rowe is describing. He has prescribed 50mg twice daily for Mack. I thought this was different & new enough to share.All the best-Julie Quote Link to comment Share on other sites More sharing options...
all4family Posted July 30, 2009 Report Share Posted July 30, 2009 Hi Julie,I am so happy you have found something that will hopefully help. I have thought of lymes for myself also, but have so many fires to put out I have never asked about it. Please let us know how Mack does on them. I will be praying for him. HugsSuzy Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 30, 2009 Report Share Posted July 30, 2009 Good on him for thinking outside the square and trying new things. The lyme thing is a little controversial but plausible. Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted July 30, 2009 Report Share Posted July 30, 2009 Yes, good for him to be LOOKING! As a matter of fact - I feel better if I have a course of antibiotics once a year or so. Quote Link to comment Share on other sites More sharing options...
yogini Posted July 30, 2009 Report Share Posted July 30, 2009 I think it's worth a try - I think antibiotics are mild on the body compared to some of the other POTS treatments out there. But my only question is, if you and your son both have POTS, could Lyme still be a cause? Quote Link to comment Share on other sites More sharing options...
cordellia Posted July 30, 2009 Report Share Posted July 30, 2009 yes, i definitely feel 'better' when on antibiotics. bravo for the intrepid doctor. best of luck to mack. regards, cordelia Quote Link to comment Share on other sites More sharing options...
It'sMyLife Posted July 30, 2009 Report Share Posted July 30, 2009 Thank you so much for sharing! Quote Link to comment Share on other sites More sharing options...
juliegee Posted July 30, 2009 Author Report Share Posted July 30, 2009 I think it's worth a try - I think antibiotics are mild on the body compared to some of the other POTS treatments out there. But my only question is, if you and your son both have POTS, could Lyme still be a cause?Highly unlikely. I think Dr. Rowe is noticing that lots of patients have an inexplicable improvement with antibiotics. Does that mean they all had lyme- probably not all. He surmises that it helps with inflammation from many sources AND it may be treating a lyme-like infection that hasn't been identified (nor can be tested for at this point.) Seeing how they helped me, it's worth a try for my son. I'll let you know how it goes. Quote Link to comment Share on other sites More sharing options...
yogini Posted July 30, 2009 Report Share Posted July 30, 2009 Interesting...hope it helps! Quote Link to comment Share on other sites More sharing options...
runningshoe Posted July 31, 2009 Report Share Posted July 31, 2009 HiI live in an area severely affected by Lyme. 7 people on my street had it last summer - who knows how many this year. My lyme tests are always negative. I took my daughter to a lyme specialist who also happens to be a neurologist. When she read our medical history and saw the stuff about me she said get tested for Bartonella. It is a co infection. Maybe suggest that to your son's dr and see what he says. I guess Bartonella causes neurological damage.Good luck! Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 31, 2009 Report Share Posted July 31, 2009 Very interesting. Thanks for sharing. Definitely let us know if your son notices any improvement while on the antibiotic.Rachel Quote Link to comment Share on other sites More sharing options...
erik Posted August 6, 2009 Report Share Posted August 6, 2009 Some antibiotics exhibit neuroprotective effect, separate from the antibiotic effect... so there doesn't even have to be an underlying "infection" being tidied up, it might be treating a neurological problem directly.In other words, the Lyme disease hypothesis isn't strictly necessary to explain why some antibiotics might be effective... if they are. Hope so (and other experimental neuroprotective agents could be handy too). Quote Link to comment Share on other sites More sharing options...
yikespanic Posted August 7, 2009 Report Share Posted August 7, 2009 I'm one of those who had lyme and didn't know it. I was treated with antibotics for about a year. I believe that's where my POTS origionated. I am much better that I was before treatment, but I am left with my POTS. Kim Quote Link to comment Share on other sites More sharing options...
Lenna Posted September 14, 2009 Report Share Posted September 14, 2009 Hi Julie,I was just wondering if Mack ever tried the minocycline. I have read some of your recent posts that said he hasn't been doing too well lately, (I hope things have improved by now!) and was wondering if this could have been triggered by the antibiotics, or if he had even started on them. Would love an update on this topic. Thanks!Lenna Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted September 14, 2009 Report Share Posted September 14, 2009 For awhile I was having recurring sinus infections and my ENT had me on antibiotics and I noticed I felt my POTS symptoms were slightly but noticably improving while on the antibiotics! The doctor said that some antibiotics have an anti-inflamatory effect on the body! So maybe they are both neuroprotective and anti-inflamatory...all I know it that I felt better. Too bad I have developed many allergies to antibiotics! Quote Link to comment Share on other sites More sharing options...
juliegee Posted September 14, 2009 Author Report Share Posted September 14, 2009 Hi Lenna-Thanks for checking in No, Mack hasn't tried the minocycline yet. His doctor likes him to try one new med at a time and he's really struggled with clonidine. He worked his way up to .1mg and decided that it helped him relax and sleep better, BUT made him too tired in the AM. He backed down by a half tablet and had awful symptoms. He's still leveling out from that and has decided to stick with .05mg every night. He plans to give provigil (in lieu of concerta) a whirl next. THEN, he'll give the minocycline a try. Tiny baby steps around here Have you given minocycline a try yet? I'd love to hear if they helped.Julie Quote Link to comment Share on other sites More sharing options...
Lenna Posted September 14, 2009 Report Share Posted September 14, 2009 No, Dan hasn't tried it. Please let us know how Mack does with it. Hope he's feeling better. Quote Link to comment Share on other sites More sharing options...
Tammy Posted September 14, 2009 Report Share Posted September 14, 2009 I really think the antibiotic might help. I think it has to be very low dose over a long period of time for best results, but however his doctor feels will work is worth trying Hoping for good results for your son. Quote Link to comment Share on other sites More sharing options...
iheartcats Posted September 14, 2009 Report Share Posted September 14, 2009 Let us know!I grew up in a lyme-heavy area and I read it could lie dormant for years, so one never knows. I remember flicking off ticks as a kid. Obviously there's a lot of controversy, but like you said...it could be something SIMILAR to lyme. We all know medicine hasn't found and solved everything out there yet!Thanks for posting, this is something I'd been reading a lot about lately. If I don't get more improvement soon, I'm considering flying back to see my old (open minded) EP about this. I feel a low-dose antibiotic for a while isn't a huge deal compared to other meds. I know people who've done it for acne! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 19, 2009 Report Share Posted September 19, 2009 Its interesting - doctors like Dr Stewart and a few others have commented on the connection between POTS and inflammation in general. Many inflammatory markers used by the immune system are quite vasoactive - either as vasodilators or constrictors. Quote Link to comment Share on other sites More sharing options...
It'sMyLife Posted September 19, 2009 Report Share Posted September 19, 2009 ram- Where is Dr. Stewart located? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 19, 2009 Report Share Posted September 19, 2009 New York I think : www.syncope.org or www.nymc.edu Quote Link to comment Share on other sites More sharing options...
goldicedance Posted September 19, 2009 Report Share Posted September 19, 2009 Good for Dr. Rowe.When I first got sick in 1994, my internist pulmonologist investigate many possible causes, including LYME. I even tried IV Rocephin.Good luck to Mack.I take Provigil and find it quite helpful.Lois Quote Link to comment Share on other sites More sharing options...
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