blsvlo Posted May 6, 2007 Report Share Posted May 6, 2007 i have been over at the lymenet finding very similar symptoms..... i was dx with ms in aug 2005 and now i have to question that dx. because it is rare to have pots and ms and it isn't with lymes and pots....i just wanted to know how many of you with pots has lyme as well??????by the way i got my new wheels........... a brand new powerchair that reclines and my legs are lifted as well....now i get to scoot down the road to the park with my kids.....i have alot of independence back and i am going nuts wooooohoooooo!!!!i do pay for it though because i am so wore out!my neurologist who was not wanting to help me out at all finally after i cried alot sent a PT to my house and he witnessed my disability and wrote a letter and then all of a sudden the scooter store calls and says i got my powerchair and the insurance is paying 100% of the $8000.00.............. i was so stinking excited....ok one more thing........... i have been on toprol (beta blocker 25mg once a day) for 2 months and i have not found a change except now my bp while laying is much lower... before avg. was 106/63 hr 69now avg. is 88/50 hr 55 is this ok???????????? or do i need to report that to my doc....?i do my readings and it goes from that to 126/82 hr 110 while standing after 5 mins.... i don't go any longer than that i really pay for it badly....any input????hugs to all>>>>>lisa Quote Link to comment Share on other sites More sharing options...
blsvlo Posted May 6, 2007 Author Report Share Posted May 6, 2007 i have been on toprol (beta blocker 25mg once a day) for 2 months and i have not found a change except now my bp while laying is much lower... before avg. was 106/63 hr 69now avg. is 88/50 hr 55 is this ok???????????? or do i need to report that to my doc....?maybe this will be an easier question for now......... thanks, lisa Quote Link to comment Share on other sites More sharing options...
DanniBunny Posted May 6, 2007 Report Share Posted May 6, 2007 I hadn't heard about lyme and POTS before, but thats very intresting I should do some research, because I suspected I had lyme before my diagnosis with pots.I've heard MS and POTS is rare, but I've spoken with someone on aother dysautonmia forum that has both. If you like I can PM you the forum site and you could ask around there? I'm new to this world so I don't know how much cross-over between the dysautonomia forums there mnight be.I'm on toprol as well, but I just started 2 days ago, so I'm afraid I'm not much health. If i've learned anything during my daignosis though its tell EVERYTHING that changes to your doctor. It might mean nothing, but keeping them informed is always a good plan IMO. Quote Link to comment Share on other sites More sharing options...
dmaejean Posted May 7, 2007 Report Share Posted May 7, 2007 Lisa,88/50 is not good for an average bp. Call your dr. tomarrow so they can adjust your meds. It usually gets lower while sleeping and you don't want that to happen.Donna Quote Link to comment Share on other sites More sharing options...
Rachel Posted May 7, 2007 Report Share Posted May 7, 2007 Hi Lisa,Yes, there are a few people on this forum who have POTS and lyme. There have been some topics on it in the past, so a search for "lyme" might be beneficial to you. I'm so glad to hear you got a powerwheelchair!!! That is wonderful. I'm sure it is good to have some freedom back. Enjoy it!88/50 is a low blood pressure. If you're feeling okay don't stress about it too much, but do mention it to your doctor. Your blood pressure might be dropping because of your hr being lowered. Sometimes our hearts compensate for low bp by beating faster. But if you're beta blocker is lowering your hr too much, then it could cause your bp to go too low. Just a thought. I'm not a doctor!The bp of 126/82 while standing is pretty good. Target bp (depending on who you ask!) is 120/70 or 120/80. So you're pretty close to that. The hr of 110, however, is not normal, but it is normal for us potsies! Does your hr lower a bit if you're moving some? For example, if you are moving the muscles in your legs just a little then the blood flows up more easily. But if you're standing completely still then your heart has to do most of it (since our veins don't constrict well). Did your hr go higher than 110 while standing before the beta blocker?Report all of your changes in rates and symptoms to your doctor. Hopefully he can help you and ajust your meds so that your symptoms are controlled better. I hope you can find the answers and information you need.Take care,Rachel Quote Link to comment Share on other sites More sharing options...
blsvlo Posted May 7, 2007 Author Report Share Posted May 7, 2007 i have called my doc. today to report the bp change he needs to call me back...since they have sent the PT to my home he has been doing very little excercises with me while i'm laying flat but when he tries to get me to walk with my rollator(walker) i can go aprox. 10-12 feet and i become very shaky and sweaty and feel faint and he checks my hr and it is always around 150bpm and we get to the bed asap........ i am very sick and then it seems i pay for it for 2 days...... he no longer wants to do that anymore.... this is even on the beta blocker..i had a positive ttt but the cardio has not come out and said it is POTS..... they don't seem to be knowledgeable about it in my area.... i am going to vandy june 13th!hugs to all>>>lisa Quote Link to comment Share on other sites More sharing options...
pamyla Posted May 7, 2007 Report Share Posted May 7, 2007 Hi Lisa, I'm one of the people who has been diagnosed with both lyme and pots. I am currently back in treatment for babesia (2nd go around as I unfortunately relapsed). When I went through the first round of babesia treatment my pots symptoms improved greatly. I was able to stand 2-3x longer than before treatment, which was encouraging Now if only I could permanently get rid of the babesia! I don't know much about how common MS and POTS together are, but there do seem to be a lot of people with lyme who were misdiagnosed with MS. Probably a good thing to get checked out if you're questioning it. Have you been to a lyme literate doctor?On the beta blockers, I've found it helpful to split the pill in half and take 1/2 in the morning and 1/2 at bedtime. Hope you find some answers Pam Quote Link to comment Share on other sites More sharing options...
AJVDK Posted May 8, 2007 Report Share Posted May 8, 2007 Hello,I am also on of the ones that have both Lymes, and Pots. I am On IV Rochphin right now for the Lymes. I am gettign treated with the POTS with meds and IV fliuds. One thing I found is its been a long road in treating the Lymes and POTS. I am also in Beta BLocked I take it three times (lower dose to help with the lower b/p)Do you have a LLMD. THe one I have said there are a few Lyme/ POTS people on his office, one nice thing about that os that hes treated them before. Also the one thing I found is that some Cardio doctor don't know about POTS, I had to go though a few doctors before finding one that new about it. The one thing I am finding is it kind of trail and error. Right now I having a hard time with the abx. I am hoping things imprive soon. I am just going to keep fighting untill I beat this.I wish you luck in finding whats all going on. Amy Quote Link to comment Share on other sites More sharing options...
blsvlo Posted May 8, 2007 Author Report Share Posted May 8, 2007 aj, can you message me and tell me what doctor you see for both...... i'm thinking i may have to travel out of my small town to find a good doc. i decided to leave my cardio alone because he doesn't know enough......thank you for the replies you guys are great!!!!!!!hugs>>>>>lisa Quote Link to comment Share on other sites More sharing options...
blsvlo Posted May 8, 2007 Author Report Share Posted May 8, 2007 Amy, i seen on your condition list that you have slipping rib syndrome..... i have been all over the internet looking for something to explain the pain i have in one of my ribs and then i seen that and read more on it and wow that is probably what is happening to me........... has the doc. said if this could be related to lyme????? lisa Quote Link to comment Share on other sites More sharing options...
corina Posted May 8, 2007 Report Share Posted May 8, 2007 lisa,as mentioned there are several people around here who do have pots and lyme. so you might get some answers here!i hope you really enjoy your new scooter and am very glad that you got paid for it. as my cardio said: nobody wants to BE in scooter/wheelchair. you wouldn't ask for it if it weren't necessary. when you do ask for it, you NEED it. it gives you so much more freedom. when i am able to go out on my scooter, i will, and yes i have to pay for it, but it is sooooo worth it!!!have fun!corina Quote Link to comment Share on other sites More sharing options...
yikespanic Posted May 8, 2007 Report Share Posted May 8, 2007 hi, I am one of the ones to have lymes also. I had been on antibiotics for one year up untill a couple of months ago. It was sometimes hard to tell if my symptoms were pots or lymes related and a few months ago I had a period where I felt my lymes symtoms had abated. My lyme doc took me off antibiotics for a trial period to see what happens. It's been a couple of months and I am almost afraid to say the lymes is gone, for fear it will come back. I have had several weeks now where I am beginning to feel almost myself. The pots symptoms flair up but it is nothing like when I was really sick. If you want any info on where I went just pm me. I see Dr. Grubb for my POTS, if there is any way you can see him ,do so, he is the best there is in my opinion. Take CareKim Quote Link to comment Share on other sites More sharing options...
blsvlo Posted May 9, 2007 Author Report Share Posted May 9, 2007 wow, so many more responses then being on the ms message board...... i so appreciate all the replies and i am wondering if dr. grubbs deals with lyme also or is there someone else really good you see????hugs to all>>>>>>>lisa Quote Link to comment Share on other sites More sharing options...
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