Jenn202

Thank you so much Roselover! I will absolutely let you guys know what happens. I'm a little stressed right now b/c I am going into a POTS flare and am nervous that I will not feel well enough to go.... The anxiety of worrying about that is not helping today I wish we could all do a group visit too! I think that may be overload for Dr Low though! LOL Thank you again and I will be sure to let everyone know all the details.

Hi Steph - Thank you for the good woshes Yes we leave on Wednesday.... We are staying at the Radisson, I think that is where you stayed right? They seemed very accomodating with everything. Is it a long walk from there to Mayo? As far as what I mean By "leaky Veins" The fluid I get just goes to my tissues so my legs get filled with fluid, arms, and around my entire body... This hasne always happened... There also times when like you I just pee it all out... That comes and goes in cycles... Right now I am haveing a semi POTS cycle that I am trying not to have get into a full blown one b/c I leave next week. One Question ABout Mayo : IS the testing very strenuous? I know that I am not supposed to eat or drink anything after 7 PM on the night I get there until I get blood the next day but honectly that is an impossibility for me especially if I am having a flare, and comming off of a flight...its just not something I am willing to do. How did that work for you? I am so glad that the last of your surgery is over. I hope you are recovering ok? I;m sorry you went through so much this last time around afterwards. Thanks again!!

Mary - You can contact Dr Jones. He is an excellent pediatric Lyme Dr in New Haven CT..... 203-772- 1123 I am pretty certain that he or his staff will be able to point you in the right diresting as far as testig is concerned. Email me anytime if you have questions.

I was wondering if anyone else has fluid build up in their tissue from Leaky Veins? Dr Grubb explianed that my Hypermobility breaks down my collagen as well as my veins failing to constrict properly will allow fluid to leak out. Everytime I get IV fluids It goes straight to the tissues ..... Its almost like the IV does nothing at all anymore b.c the fluid is displaced. Does anyone else have this problem?

Thank you so much Emily for your kind words You hit it all in what you wrote. I usually do not like to talk about Lyme Disease b/c I have realized through the years I have gotten negative responses from people like " oh well that is not me or I am not like that" So I have chosen to keep info to myself and help myself with what I have learned ( which is working very well) It gets very tiring to try and explain Lyme... I have become so educated in it and been through so much I can hear someones story and know if its Lyme or not... Anyway, I appreciate you understanding! About what cam efirst Lyme or dysautonomia... Lyme disease effects the central nervous system as well as the Autonomic system. Dr Grubb explained that b/c Lyme gets into the brain it disrupts the connection to the hypothalamus area which is turn causes all these problems.... Treatment can actually make dysautonomia MUCH better or even completely better. because it is going after the bacteria that is causing thr disruption. So that is the route I am taking since I have seen success already. Feel free to email me anytime if you have questions. Like Katherine I woudl be more than happy to offer any help That I can ......

Merrill - Congratulations on adopting a child!!! Thats such wonderful news I had posted in another topic about possibly adopting in the furture if I find trying to concieve a child will be too difficult. I wish you the very best Morgan: my husband was raised with a mom with a chronic illness and I truly believe that is why he is the caring and understanding husband he is to me now....he understands the adversity someone who has an illness faces and the ups and downs b/c he grew up with it. So I am sure your children will go through life with that same understanding outlook.

I'm so happy you are getting treatment Katherine! Remember that if you still have symptoms after the 2 week period you might need additional treatment.... Espicially b/c of your positive Lyme tests even before this bite. Email me anytime, I would be happy to help you in any way I can. Glad you got the doxi.. Take Care

Hi Katherine - thanks for your post. I hope you get some answers and help today at your dr's appt. I just wanted to clarify the thing about Lyme Dr's.... Many of the treating physicians out there right now cannot accept insurance b/c insurance will reject the testing... You can always submit and most insurance will pick up most or at least part of it. many of these physicians ( including mine) are good people that have put endless efforts into research and help for patients. They are the Dr Grubb"s of Lyme and have gone against the "yale" mentality to help people..... These Dr's saved my life. I am not exaggerating when I say that I most likely would of not made it if I had not gotten treatment. AT the least I would have been in a wheel chair..... Not every person that goes in is diagnosed with Lyme disease.... Although there are a couple I can think of who have the reputation.... but most of them are not. the others are a the Dr's who are interested in linking dysautonmia with Lyme and working with Dr Grubb..... and giving their patiens back quality of life which they would never have otherwise. I guess we could say the same for the Autonomic speicalsts , that they diagnose everyone with dyautonomia that goes to them. I think that is because the people that seek them out actually do have dysautonomia. On the flip side I fall suspicious to the supossed Dr's who treat Lyme who tote supplements and other experimental therapies which can be bought or done in their office. I would stay far and clear from that.... I just wanted to add that in..... I'm not trying to be a "know it all" I apoligize if it sounds that way.. Its just that I have gone through so much and seen so much the good and the bad that I know the ins and outs of the Lyme community.... Now I am having to learn the ins and outs of the POTS community!! For myself had I not treated the Lyme I would most likely still barely be able to stand in the shower without dropping on the bed afterwards for the entire day ( and that was a good day! LOL) Anyway, I am off the soap box too, and on to getting errands done that I have been putting off all morning! LOL

One thing I forgot to add out of respect to this wonderful forum: This is my personal experience with Lyme Disease. When I speak about treatments etc...I am speaking from years of research of information given to me by Dr's, my own reserach as well as other patients....... BUT I am not a Dr myself and in no way intend to try and diagnose anyone when I give advise for Lyme.... I would advise anyone who thinks that they could have Lyme or want to explore it futher to seek a dr's opinion. They know more about your health than anyone.

Hi Katherine - I cannot tell you how important it is to get treated right away for this new Bite...... Also its important that you get the right treatment, and find out if you have any coinfections as well since these are separate illnesses transmitted by the tick that need to be treated separately.... Lyme Disease when treated right away and treated correctly...which means a minimum of 1 month of an abx such a doxicyclene, will usually take care of it, but if symptoms continue then I would definetly seek out more treatment and a Lyme literate Dr who understands more about Lyme and the different treatments. Please do not think that I am trying to be alarming..... But Lyme causing permanent neurological problems like POTS can be avoided if it is found and taken care of. If I had any of this information years ago I most likely would not even be on this board today..I would be healthy and living life. Take Care.

Hi Jessica - I didnt realize you had tested positive for Lyme Disease..... Definetly get treatment for it... I cannot stress this enough, and have your children tested periodically as well. Isnt it just great to have 2 misunderstood diseases?!?!?! It gets so frustrating. I wish that mainstream Dr's would get more educated on how aweful Lyme is, and understand that most people with Chronic Lyme need long term treatment. DId he test you for coinfections also? I would definetly get tested for these as well since they usually go hand in hand. Also if your POTS is brought about by Lyme Disease then you have a chance at getting much better from that also! E mail me anytime if you have questions..I would be more than happy to help I wish you a safe and healthy delivery...

Hi Emily - Thanks for posting this on a separate topic.. I am computer illiterate in that respect! LOL I grew up around 14 acres of land as a kid... I remember having numerous ticks taken off me.... I have learned that Lyme disease can Lie dormant, and your immune system can keep it in check , and it can come out later with a stressor to the body either physically or mentally.... AT the time I got sick I was working about 50 hours a week, and had quite a bit going on in my life..... So I am not sure if was bit again in this time period or if it was just the disease surfacing from the childhood bites. Also the tick that transmittes Lyme is the size of a poppy seed, so it is VERY easily missed. Also only 40% get the classic bullseye rash which makes it more tricky since mainstrean Dr's seem to like to go by only that piece of info. As far as being able to tell POTS from Lyme... Its so difficult b.c the symptoms can be SO much alike... For me, as I got further along in my Lyme treatment, and had resolution of many of my symptoms, it made it easier to see what was doing what. I would say that 90% of my problem right now is POTS related. My next goal is be able to up my Lyme treatment..... I leave for Mayo next week so hopefully I will get some confirmation from my Grubb Appt.... Have you ever had a tick bite that you remembered? Again thanks for reposting this!! Have a Good night

I just wanted to say how happy I am that this site exsists. There are many forums out there that are not positve and "clichy" and left me feeling bad. I definetly understand why there needs to be some regulations to keep it such a positive place. This site makes me feel great, suported, understood, and I look forward to checking in daily to see what is going on. I seem to always want to get here at some point in my day to read what is happening whether it is before I start my day, or before bed.... I have to say I usually enjoy every post written here, and the people on it. You have done a great Job Michelle!

Thank you Corina! I am so gald that it worked out for you and you were able to have your children! I seem to really react to hormonal changes in me.... It seems to flare up my symptoms.... I am not sure if it came down to it if I could do hormone treatments....but one never knows. I guess I can cross that bridge when I get to it. I have never been against adoption either.... I would explore that route as well... But like I said when the time comes LOL Thanks a lot!

Hi emily - It is funny how we all seem to connect there on different topics... I think thats what is so great about this forum! I have gotten so much information that has changed my life I would be happy to share information and my personal experience with Lyme..... I became ill in 1993.... Too many symptoms too mention but mainly severe fatigue, muscle weakness, problems with coordination, heart palps, dizzyness, trembling, Cognitive problems, fevers, headaches, numbness ..... Etc.... I went to tons of Dr's at the time and nothing showed on any tests... I was diagnosed with CFS, and told I was just depressed and it would get better. I had Lyme tests at the time that would come back either negative or as they put it "boarderline positive" Like there is such a thing! It didnt get better, for the next 4 years I got worse and worse... I was so ill and weak I could not lift my head off the pillow. I was nonfunctional and bedridden.... I sought out more Dr's with no answers, and many alternative health practitioners who could not help. It wasnt until 1997, that they ran another Lyme test...It came back VERY positive. From then until now I have been on Lyme treatment. I have hit some road blocks along the way with Bad Lyme Dr's and not the right treatment which hindered my progress. ABout 3 years ago I found a great Lyme Dr and got on the right combination of abx which slowly but surely worked... I have gotten better and better.... I can say I am about 80% functional now. And many of my symptoms are completely gone or mild. In the wake of all this I was diagnosed with dysautonomia... Which was caused by the Lyme Disease. I was also just diagnosed with hypermobility By Dr Grubb as well. All these things contribuited to this dysautonomic like conditon. Dr Grubb is pretty positive that with continued treatment that I will start to reverse the dysautonomia.... He has about 30 patients with Lyme that triggered this condition and he said those have the best chane of recovery b/c it is still a treatable condition, Treating the source of the dysautonomia is the best thing you can do. Although there are times when this is not possible such as if it was triggered by a virus, or is genetic.... The biggest problem I have is tolerating the higher doses of abx, b/c of med sensitivities..... As You know its hard for anyone with dysautonomia to take an antibiotic, and for people with Lyme as the cause it is the thing they have to take. Bottom line is that abx have saved my life, and I am so thankful for the progress I have made. Lyme is a debilitaing disease that left untreated can wreck havoc... ABout testing: Its very hard to go by any of the testing available to tell you whether you actually have Lyme Disease... The tests are not accurate... when you have the Lyme bacteria in you for a long time your own body stops making antibodies to it b.c it views the Lyme as part of the body... This makes any blood test irrelevant. There are specialized tests that if sent to the right Labs have a better chance of showing up such as a PCR or FISH test. I was lucky I got some positive tests,,,as well as Positive tests for babesiosis, erlichiosis, and bartonella, which are coinfections that more people than not have along with the Lyme. Those also need to be treated to make a full recovery. Most of the good Lyme Dr's are here in the Northeast. What makes it difficult is that most mainstream Dr;s do not understand the complexities of the Disease and go by testing alone, and not symptoms..... ANd even if they do decide to treat the person for Lyme they di not out them on the right disage, combo of abx as well as not wanting to keep them on it for long term. www.lymenet.org is a good website to go to that can help give you info on Lyem disease, and also info on Dr's..... Let me know if I can help in any way, Maybe I should have made a separate post for this since it is so lengthy.....! Anyway, I hope this could help you a little ......

Hi Ling - Hang in there.... I understand how you must be feeling right now b/c I am in a similar situation as far as wanting children in the near future, but unsure about how my body will react. Keep your faith.... I know things will work for you. Your doing all you can do. Keep really hydrated like tearose said and also if you are not wearing compression hose I highly recommend them. The best thing you can do is try to relax as much as possible. Are you able to meditate? or just have some quiet time to clear your mind in the day. Have you discussed with your Dr's any "saf" med you could take to help you right now? Corina - I was wondering when you did the hormones to get pregnant did this aggravate your POTS?

I forgot to add that anything such as a cold/flu can throw me off again, and I will end up dumping a tom of urine in that time... I usually do IV fluids if it gets like that and it helps me get through it. I can imagine sugery would definetly throw all that stuff off for you... Are you able to get IV fluids at home?

Hi emily - When I was inititially put on the DDAVP I was drinking up to 2 gallons of water a day and had extreme thirst.... This was about 2 years ago. I was hospitalized and put through all the tests which came out ok except for my Vassopressin being low and my Electrolites , especially sodium being very low. The conclusion was that I was in a catch 22 where the thirst was causing me to drink too much plain water, which in turn was making me pee buckets and flush out my system. At that point they sent me home on DDAVP.. I immediately stopped having the need to urinate and the thirst got much better. I also along the way learned to watch my fluid intake and take salt tablets which helped tremmdously along with drinking only water with elecrtolite solution in it. I really felt great on it for about 6 months... Last summer I started having the severe thirst , and urinating again...it would come in spurts for me.... Through the fall up until March I was feeling more sick than I had been in that past year as far as POTS stuff, hypovolemic stuff, and Low sodium, Plus I was retaining all this water.... I went through the water deprivation test at that point and it concluded that I was making my own vassopressin and that my kidneys were functioning normally. Thats when I went off it... And for some reason going off it actually put my body back to "normal" ........ Since March ( and knock on wood of course!!) I have not had the excessive urinating epidodes...only a few times, and the thirst is not bad...and the good thing is now if I do feel thirsty I can drink and not worry about the hyponatremia part... I cannot explain why it got better... I usually get up about 1 time maybe 2 in the middle of the night... I used to be up 6 times! During the day I urinate pretty normal...except for some episodes when I have a POTS flare. When I saw Dr Grubb he believed that my Lyme disease treatment is what is reversing some of this stuff,,,, I guess I will wait and see..... I also had a 24 hour urine sodium test which showed that I dump a lot of sodium....... I would say that if you are feeling good on it, and your DR thinks its ok, and it helps your quality of life than there would not be a reason to go off of it. Have you had your sodium levels checked? Like Sophia just posted.... There are tell tale signs to hyponatremia...water retention, puffyness, iritability etc etc.... Your Dr would definelty know what to look for. Sorry for the lengthy post! I just wanted to share the enitre thing so that you could get the whole picture.. Now you know the ins and out of my daily peeing schedual! LOL Take Care.

FOr me DDAVP was initially a life saver, but as time went on I noticed complications that at the time I was not aware were from the DDAVP.... I had Monthly blood work ups to check my electrolite levels on it. I was developing Hyponatremia from retaining too much free water, and my sodium was very low...... I was feeling pretty bad and ended up stopping it in March...since March I feel MUCH better...... My sodium is back up and I lost all that extra fluid that was in my tissue making me sick, also my POTS symptoms improved dramatically as well. Upon more research with the drug I learned that it can have an inital good effect but over time the body can become desensitized to it,,,, This is only my experience... I know many people take it a do great on it like Emily and Sophia.....And I was one of them that for a time was helped by it. Talk to your Dr. I am sure he/she could give you some more insight on whether it would help you. Good Luck and I hope that this might be a key to getting you feeling better

Ernie - I am SO HAPPY for you!!! Its so nice to be able to have your freedom...you deserve it!

Acidophillus is a MUST when you are taking abx.... Abx not only kill the bad bacteria, but also the good bacteria that live in your intestines.... You need to replace this with a good probiotic. I like PB8, and Flora Source...also the ones made by Natren are great ... You can purchase all these online....You can never take enough of it .... I have ben on long term abx for Lyme Disease for 8 years, and have never had one stomache problem b/c of probiotics. Feel Better!

Hi Persephone - I really know how you are feeling, and after so many bad experiences its like you fear what is around the corner.... I have been there more times than I can count. The one thing that I can say to you is that no matter what you are told never give up finding a Dr that will confirm your diagnoses and help you. I have had more doors shut in my face than ones that opened for me... I have been ill since I was 22..now 33..... Its been a long journey and along the way being told I was depressed anxious, crazy...etc etc... But I finally have answers, and help and have been able to get functional again.... From what I know of the hospital you are going, you are in good hands... I have tried to get a hold of my Friend this week , but have not had any luck. When will you be leaving? Hang in there.... I have faith that you will get the answers you need.....

I think most people that have this problem are drug sensitive. I have actually cut off a tiny little bit of a pill, like a crumb to put in my mouth b/c I am so sensitive to things. Some stuff I tolerate better than others. Some drugs I feel sick in the beginning then mybody gets used to them, and some just make me ill and I never can take them. I've learned its trial and error..and if I dont try a particular drug then I will never know if I can have success with it...even though it is scary at times and I look at the bottle for a few weeks before going for it!!

I use it when I get into a real slump and cannot get out with drinking liquids. This usually happens when I get a virus.... and sometimes it just happens on its own, but more so the other. The IV saline increases my volume, gets blood back up to my head... I get very dizzy, weak, and get "rushes" like I will pass out. Iv usually does the trick.... Do you actually insert the needle yourself? Thast one thing I dont do. The nurse comes and does that part... I have all the supplies so I start and stop myself at home.....

I love my compression hose. For me they make a big difference. I can definetly tell the difference when they are on. I have a couple pair of Aimes Walker and a couple pair of Jobst.. The Jobst are the most comfy, but ames Walker are ok as well. I have also found excersise to be the most important thing I have done... Since seeing Dr Grubb, he told me one of the reasons I never passed out was b/c I have consistently lifted weights, and had very muscular legs... I have upped my workouts since then and it has made all the difference. I have a total Gym that I use 3 times a week and an elliptical trainer I use 2 to 3 times a week. I know that many on this board are not well enough to do that type of activity , so check with your Dr about what type of strength training is right for you. Good Luck