pamyla

Hi everyone, Thanks for all your input I'm still a nervous wreck regarding having this done and will probably put it off for months! But I am glad to hear that the epi can be a possibility for some. Honestly I kind of wish they would just knock me out like they did for the wisdom teeth - I am a total wimp when it comes to dental work Thanks again, Pam

Hi Lauren, Thanks for the information on the supplements I'm actually already taking a few of those, so at least I know I've been doing the right things. How much quercetin and CoQ 10 did your doc tell you to take? For probiotics my doctor recommended Theralac. It's expensive but, in my opinion, worth every penny. I was starting to have yeast problems after about 6 months on antibiotics and this stuff really helped get it under control. I think the only place to get it is from their web site - http://www.theralac.com/. It looks like Jarro-Dophilus is also available on immunesupport.com - https://www.immunesupport.com/shop/product....uct__code/N0213. I'll have to try some of that next time (I often will take 2 types and alternate) especially since it's more affordable Good idea about the shot glasses Nina Pam

Hi everyone, I've been grinding my teeth for years and it's finally resulted in me needing a skin graft for 2 teeth on my bottom I went to the periodontist yesterday and discussed the procedure and he wasn't very encouraging about doing the procedure without epi. He wants me to talk to my doctor about whether I can tolerate a small amount of it. The last time I had a cavity I asked for the novacaine without epi and I felt the drilling. It was awful and I cringe about having another one. But I don't want my heart going crazy either. I'm really not sure what is going to be worse.... Has anyone ever had the novacaine *with* the epi? Did your heart race? I wonder if I took an extra dose of my beta blocker if I could tolerate it. Also, anyone else been through a skin graft? Thanks! Pam

Hi Lauren, That doctor sounds much better than the last one you saw for lyme Glad to hear he is taking the time to figure out the whole picture and treat based on that. Just curious what vitamins you are taking for supporting the immune system? Did the lyme doctor recommend them? I am definitely in need of any support I can get! Thanks! Pam

Hi Lauren, That's great that you found a doctor willing to spend time on your case and who sounds like he can help you While it's not great to have lyme, the way I look at it - if you have it you definitely want to know - and be able to treat it. Please keep us posted on how you do with the antibiotics. What do they have you starting off with? Glad to hear you are making progress in getting some answers! Thanks for updating us Pam

Katherine, I think you're looking at the wrong thing. Sorry, I should have posted a more direct link - I realize now the link was on the right side of that page. Dr. Burrascano was one of many authors. http://www.guideline.gov/summary/summary.a...amp;string=lyme Deciding about treatment can definitely be challenging. Until more research is done it's up to patients to be informed. (hey, sounds like POTS doesn't it )

Hi all, There is a lot of controversy in the lyme community and there are basically 2 sets of treatment guidelines that have emerged. One is what has previously been posted - the IDSA (infectious disease society of america) as they just published updated guidelines. This article here will give a good synopsis of how the guidelines were updated - http://www.docguide.com/news/content.nsf/n...52571FB00569D15 The other set of guidelines is given by ILADS (the International Lyme and Associated Diseases Society) - www.ilads.org. Treatment guidelines can be found here - http://www.ilads.org/guidelines.html Most of us with chronic lyme who are undergoing treatment are seeing a doctor who follows the ILADS guidelines, as the IDSA doctors do not advocate long-term antibiotics. I think this article does a good job of explaining how there are 2 sides - http://www.ilads.org/insurance.html I think it is important that patients be aware of both schools of thought so they can make an informed decision. There is research supporting both, and the guidelines are very different with regards to treatment. We definitely need more research.... Pam

Hi Robert, Welcome to the board Staying hydrated is definitely a challenge for me as well. What works for me is to drink water continuously throughout the day with a small amount of gatorade (the powder) thrown in. I have a tough time tolerating all that sugar otherwise. I also eat a can of soup a day - when I stop doing this I have a difficult time getting enough sodium in my diet. Let's see, switching to sea salt was also helpful. And when I need come extra hydration I start the morning with Emergen-C. I find the shakiness is always worse in the mornings for me. Probably cause we need more fluids when we wake up. I also need my beta blocker first thing before I get out of bed My blood pressure also rises upon standing. Just another way our bodies try to compensate and keep us from fainting. Pam

Hi Linda, I apparently have some type of vasculitis, although my primary care doctor did a blood test for it (I'm not sure exactly what test it was) and I came up negative. I was referred on to both a dermatologist and then a rheumatologist, as I had a rash on my inner thighs, which I later learned is called livedo reticularis. My rheumatologist says I exhibit signs of vasculitis and I know she keeps watch over it but I'm really not sure which of my tests led to that conclusion, or if it was simply enough to look at the livedo. I'm being treated for lyme and I believe that is what is causing the vasculitis in my case. As for being "a lot sicker" I'm able to work full time, so that part sounds like bs to me! good luck, Pam

Hi Lauren, lyme testing can be so frustrating Which lab did you have your test done through? I have only had a CDC positive test through Igenex labs. For awhile any other lyme tests I took were completely negative. (I think I had 3 or 4 over the years) Now after a year on antibiotics I am starting to show something on the tests through other labs as well, although still not positive by CDC standards. I agree with you that having 1 band, I'd investigate lyme further (just my personal opinion - I'm not a doctor!) I mean why would you show anything at all, right? And it's definitely something you want to be able to rule out 100%.... Did you have any testing for co-infections done? Feel free to email me if you want to chat further. Hang in there, Pam

Hi Corina, Glad to hear your doctor seems to have some knowledge of lyme - that's tough to find! Something else you might want to consider is to also test for co-infections. A lot of people who have been bitten by a tick end up with other things besides lyme (Bartonella, Babesia, Erlichia, etc.) In my case I had babesia as well and my immune system seemed to ignore the lyme in favor of the babesia. Once I got the babesia under control that's when my positive lyme test showed up, but I wasted years as no doctor ever tested me for the co-infections until recently. And yes, lyme does exist in Europe but I believe there are different strains of it than we find in the US. As for the prevalence of lyme, I personally believe it is very underreported in the US. Lyme is a confusing and difficult diagnosis to get and my best advice is to educate yourself as much as possible. I hope you find some answers! Keep us posted on how your test turns out. Take care, Pam

Ariella - I'm sorry to hear you have lyme, but happy that it showed up on the test results for you. Keep us posted on how it goes with the lyme doc. Hopefully you're treatment will be headed in the right direction now - getting you to feel better Pam

Sorry to hear you have to fly this week A wheelchair might be a good idea in case the lines are long. As for the water, I'm guessing that once you're in the airport you can buy whatever you need. I wonder if they'd let you take that on the plane as you would have already gone through security at the point... If not, I'd talk to the flight crew and explain that you have trouble staying hydrated and need extra water. I bet they'd be happy to make sure you get enough. If you have time to talk to your doctor, I bet bringing a doctor's note along explaining that you need to stay hydrated could be helpful. Good luck with your flight! Let us know how it goes. Pam

hmmm....interesting, I was recently given a prescription for zanaflex for insomnia. I don't have any problems with migraines. I know it's supposed to be a muscle relaxant though. I haven't started taking it yet because I saw one of the side effects was low blood pressure. Have you had any problems tolerating it? Has it gotten better with helping your migraines? I hope so Pam

When I first got sick with POTS I was out of work for about 2 years, then I went back to work on a part-time basis and within a few months went back to full-time. Since then I've basically had a full time schedule (going on 5 years or so now). I'm lucky in that I don't pass out though, and feel pretty normal when I'm sitting. Luckily my job is computer based and I can handle sitting at a desk all day Before POTS my job was not computer based, and I actually switched careers in order to have a job I felt I could handle better. It all works out in the end though because I enjoy what I do now a lot more than my previous job Also, I'm very lucky in that I can work remotely and so often work from home. Working up to full-time is a good idea. I find once I get used to spending that amount of time at work it's not that bad for me. In fact I sometimes find I feel more tired on the weekends because I end up pushing too hard on things like cleaning the house and I crash. At least when I'm at work I'm limited in physical exercise - lol Pam

Hi all, I'm on doxy as well, been taking it for about 3 weeks now I think. The 2 big side effects I am aware of are - 1 - you become very photosensitive. I asked my doc about this and she said you can actually get 2nd degree burns if you are out in the sun unprotected - so very important to wear sunscreen. I'll be at the beach in a few weeks and I will actually have to go off the medication during that time. The only other side effect I'm aware of is stomach upset. I'm trying to double my dose of doxy and so far my stomach hasn't been too pleased about that So, I'm taking it really slowly.... On a good note, I haven't noticed any changes in pots symptoms, so at least in that regard it's going ok for me. I think Emily said it well - listen to your body and go as slow as you need to go. I find that I usually am not able to keep up with what my doctor wants....I need to go slower....but that's ok. You have to do what is tolerable for you. Bad brainfog tonight, so hopefully this is making some sense! Have a good night, Pam

That is an interesting question. Before the lyme dx my doctor suspected EDS, and it kind of fit because thinking back I had one or two times as a child when I felt faint, and I have always craved salt. I've also always had problems with excess sweating (yuck!) But, I didn't have all the problems with fatigue or heart rate that I have now - and I can pinpoint the time when that started. Whether that was when the lyme started, I'm not really sure... My trigger for the pots was actually a nasty respiratory infection I picked up, so at that point the lyme may have already been there but my immune system may have been handling it. But, prior to that infection I would say my ANS was behaving normally. At least I felt like I functioned pretty much like everyone else

I think it's important to be able to discuss how lyme affects pots and vice versa, because it can make for a complicated situation. Do the rest of you post on lymenet as well? Maybe we can exchange user names and start a discussion on there regarding more of the treatment side of the lyme. Just a thought. I was also diagnosed with reactive arthritis due to a salmonella infection. These days I have no clue what makes me feel badly - too much going on! I think a lot about the healing aspect as well. In fact my husband really got on me about changing my thinking from 'I'm trying to get rid of the lyme and hopefully my pots will improve' to 'I'm working towards health (not just the absence of disease)' He's been a big support, pushing me to have hope and imagine myself doing things like riding bikes, hiking, etc. Right now that still seems very far off to me! I find I typically limit my thinking - I think I'm almost afraid to get my hopes up - but I'm trying to keep a positive attitude and just take it day by day. On that note, I hope everyone has a wonderful weekend! Pam

Hi Amy, That's great news that you got an appointment so quickly! Let us know how it goes with the new doctor Hang in there, Pam

Hi Amy, Sorry to hear you didn't get the confirmation of what you suspected I'd take it with a grain of salt though, cause there are so many reasons you can end up with a negative test while having lyme. That's why it's very important to see a lyme literate doctor who can diagnose you on symptoms if need be. But definitely important to let a doctor who understands lyme guide you through this, if in fact you do have lyme. Frustrating I know I tested negative for lyme 3 or 4 times myself. It took almost a year of treatment on antibiotics before I showed up positive. I had a co-infection that was taking priority with my immune system, so the lyme was basically getting ignored... I had to get lab work done through Igenex to show that I was positive for lyme, still not showing a complete positive with the local labs. I wish you the best. Keep us posted on how your western blot turns out. Pam

Hi Lauren, I also pm-ed you my llmd's name. Keep us posted on how it goes It seems like we do need to have a lyme/pots group - It'd be nice to talk to others who understand both. Who would have guessed that lyme would be just as hard to figure out as dysautonomia.... I was dx-ed with pots almost 9 years ago, and just got the lyme diagnosis last month officially. My positive test came from Igenex. My quest labs are showing a little something, but not enough to be a definitive positive. That was after a year on antibiotics though....before that I had 3 or 4 negative lyme tests. Sometimes it really is a leap of faith on whether to pursue treatment. But then, I'd probably try anything if there is even a chance at improvement Luckily, in the last year I've had a lot of improvement from the treatment I find my bad days are worse now (probably herxes), but my good days are better. I can stand longer and I have more energy overall. I'm hoping it all continues :-) I'm not on the forum much these days, but would love to hear updates on everyone. I'll try to check in more often. Emily - Sorry to hear you're having a rough time. Those herxes can be brutal. I often get that horrible neck pain too - not fun Malosp - I was on the biaxin/plaq combo for many months and I didn't do that much herxing either, but I did have more energy. I just switched from biaxin to omnicef and after 2 weeks I herxed like crazy... Funny how different drugs will affect you like that! Take care everyone, Pam

Hi, I wasn't quite sure how to answer the poll question, because I'm really not sure if the lyme is the cause of my pots.... I've had pots for around 9 years now and just recently tested positive for lyme. Most likely the lyme has been around since the beginning, but I'll probably never know for sure. All I can hope is that with treatment the pots symptoms diminish or go away completely I've been in treatment for almost a year now for tick borne infections. I also had babesia and had to treat that before the lyme could be successfully treated. So, I guess I've been concentrating on just the lyme for about a month now. I'm currently on omnicef and doxycycline. I also get blood work frequently - I was getting it weekly for awhile - depending on how harsh the treatment is. And I've switched antibiotics a couple times over the last year. A lyme literate doctor is a must because the treatment can be complex.... And lymenet.org has also been immensely helpful to me. hope this helps, Pam

I have had diarrhea for the past year, so I can't even imagine dealing with it for 8 years!! My doctor told me to take Fibercon once a day. It seems counterintuitive to me cause it mentions being a laxative... but I think the fiber bulks things up a bit. It works pretty well for me and has gotten things under control. Hope you feel better soon! Pam

Hi Nina, That's awful that your doctor wouldn't approve you getting a handicapped permit! I got mine 2 years ago when I headed back to school. The parking situation is awful and I told my cardiologist that I was not able to walk 1/2 mile to class. Maybe you can tell one of your doctors you're having trouble getting to class? good luck, Pam

I just wanted to chime in here with the others that if you even suspect lyme it is really important to find a lyme literate doctor. I have had pots for almost 10 years now, and have been tested numerous times for lyme - all negative. About six months ago I ended up at a LLMD for another condition and tested positive for one of the co-infections (babesia). It's amazing to me that I had never been tested for that before cause there is a lot of overlap in the symptoms. With treatment I have found that my good days are better, but my bad days are worse, so it can definitely be a long road. Radha, I had a lot of trouble tolerating one of the medications (plaquenil). I had to take the smallest dose possible every 2 or 3 days and build up from there. Maybe you could try a tiny dose once a week or something? It took me about 3 months but I did eventually adjust and am doing better now. Also, here's a strange one, the night sweats actually make me feel better (after I have them). It's like my body is getting rid of the ick... Pam