jcadwell9

jpjd59 was your daughter able to fully recover from the Lyme and Pots? Any advice on what treatment worked for her? Nymph I appreciate your help too. I don't have any of the symptoms of Sjogren's so I don't think that is my problem, but perhaps you are correct that another autoimmune problem is also underlying.

Hey Katie, Thank you for the reply! I realize that the POTS is a result of a different underlying cause, but I think most of the symptoms that I'm experiencing on a daily basis are symptoms from a disfunctional autonomic nerous system. I know that Lyme is probably the real problem here which is why I'm seeing a Lyme specialist and I'm pulsing antibiotics, but I'm also excited at the possibility that I could have a specific name for these symptoms and a reason why I'm feeling this way. It might help me gain some short term relief of symptoms and give me some of my day-to-day life back. It's the first time I've felt like I can connect all of the dots of my symptoms to make sense of them, and I'm hopeful that if I can find a way to effectively treat the POTS along with the Lyme then I will improve even more. Before this idea I was thinking of all of my symptoms as an immune system problem and if I confirm that I have POTS then that will turn everything on its head and could change my treatment, that's all I'm trying to say. I might find more relief from increasing my exercise, fluid intake, and salt intake which were things that were not a big concern to me before. I'll talk to my doctor about Candida during my next visit. Thanks for that suggestion. I get the same symptoms from walking into a grocery store or lifting weights as I get from eating sugar so my gut instinct say that its the same problem, but I'll have to get things checked out to make sure. I haven't been thouroughly tested for coinfections. I was tested for babesia at the same time as the wester blot and it came back negative but that's all I've done. I'll have to talk with my doctor further about that too. Looking forward to hearing more from you! -Jcad

Hey all, I apologize for the long winded story in advance. I just joined this forum because I think I may have POTS. I'm still in the early learning stages of this so I'm looking for thoughts and advice from you guys. Here's my story: I'm a 27 year old male who lives in Virginia. This all started around 5 or 6 years ago when I started having issues with frequent bowel movements and diarrhea. I went to a gastro and had many tests done, only for the doctor to tell me that everything looked good and all he could tell me was that I had IBS and I needed to watch what I ate. I altered my diet somewhat but the issues still persisted. Then 3 years ago I randomly got shingles which is really weird for someone my age. The doctors said it was due to stress even though my job and life was pretty stress free. Then a year and a half ago the wheels came off and I started having serious problems with my brain and energy levels (all of my symptoms are listed below). Here are my main symptoms, I've listed the most bothersome at the top and least bothersome at the bottom: - Fatigue. I just don't have the energy to do things anymore. - Brain fog issues. I'm not sure what to call this. It's like a mixture of faintness, dizziness and vertigo, and an inability to concentrate and think clearly, along with my head feeling like it is completely inflamed. This brain fog issue is made much worse by stimulating and stressful environments. Things like driving at high speeds, going into grocery stores (this one is terrible), going to weddings or church, high stress meetings at work, or meeting new people for the first time, even video games, can all make my symptoms 10X worse than when I'm relaxing at home. Eating certain foods also makes this worse, ESPECIALLY sugar which gives me really bad brain fog for at least a day or two after. - Frequent bowel movements and diarrhea. I've gotten the diarrhea under much better control since I have changed my diet (no gluten, dairy, or sugar), but I still have frequent bowel movements that are really loose and inconsistent and occasional diarrhea. - Pain in my thigh muscles. - Exercise intolerance. I love to lift weights but lifting heavy weights makes things way worse. Running seems to be alright though. The combination of the lights and noises at the gym along with lifting heavy weights puts me completely out of commission. - Panic and anxiety issues even though I feel very calm. It's like it is out of my control completely. I feel calm and have no reason to panic but my body feels like it is firing off in full panic mode. - Dull pain in my chest on the left/middle around where my heart is. - Unrefreshing sleep. If I don't sleep for 9+ hours I wake up feeling super tired. I don't have a hard time falling asleep or staying asleep, I just wake up tired and have a hard time getting out of bed. If I get less than 8 hours of sleep then I usually feel much worse that day. - A constant desire to be sitting down, and sitting or laying down usually helps me feel better when it gets really bad. - Moodiness. I'm used to be so level headed but now it doesn't take much for me to get really pissy. - Heart palpitations. They are pretty infrequent but I do get them. - Lower back and neck pain. - I do notice that when I stand up after sitting for a while, I almost always get that "stood up too fast" feeling. It also happens sometimes when I walk up stairs. I've pretty much ignored this symptom up until recently because it isn't very bothersome compared to the other symptoms. Now I'm realizing maybe I should have taken it more seriously. I went to the doctor after doctor and all of my blood tests were coming back normal except for a low Vitamin D (now corrected), high DHEA-S, and occasionally a low white blood cell count. Doctors kept telling me that I was depressed and to go see a psychiatrist for anxiety and depression. I wasn't satisfied with that and I kept pushing. About a year ago I found out I have hashimoto's and my thyroid is swollen, but all of my thyroid levels are perfect (TSH, T3, & T4). For 6 months I got tunnel vision on the thyroid diagnosis and researched and tried to find solutions. I changed my diet completely to a paleo diet and found that it helped, but it still wasn't a solution. Then about 5 months ago I saw a new doctor and had a test for Lyme disease which came back semi-positive (testing for lyme isn't great, I had 3 out of 10 bands positive), so my doctor said that between the test results, my exposure to ticks (which is high, I like to fish in areas with tall grass), and my symptoms that we were going to start treatment for lyme. I've been taking antibiotics ever since the Lyme diagnosis, and while I think I've seen some improvement, all of my symptoms are still there. Feeling a bit frustrated a few weeks ago, I decided to research why my symptoms got so much worse from stress and stimulation, which lead me to POTS, which led me here. I know that I have Lyme but I think that the lyme has really screwed up my Autonomic nervous system which is what is causing the majority of my bothersome symptoms. I told my doctor about this and she said that we can discuss this further when I go to see her in a few more weeks. So I'm looking to you guys for advice. Can anybody relate to this? Does it sound like it's possible that POTS is behind these symptoms? What should I ask my doctor? Any specific tests that will help? What can I do in the meantime at home make myself feel better? Thanks everybody! -jcad