Jenn202

Have a safe trip! Drink a lot and keep salty snacks with you. Also Compression hose worked wonders for me .....!

Thanks Ernie and Dawg! Dawg - I looked up the story.... Did they say which abx she was taking? I would be interested in case I pursue something with this GP. Thanks again!

Thanks for your support! I really needed it today Laura - Yes I did have her call me in some Zithromax.... She was going on and on about how she has exhausted ALL possibilities of abx for me.... ( There are only 100's out there) so I told her call in some Zithro..... and I literally hung up on her mid sentence b/c I was sick of her babble...she was so rude and condescending.. Dizzy Dame - Yes I would love to report her to our local hospital. but I am a little nervous that it would mean giving my name and possibly sabataging other good Physicians.... I could be completely wrong... I guess a call woudl not hurt...she has been negligent on many accounts.... Last year when I was ill and in the ER the ER DR wanted to admit me so he called the GP and told her she needed to come down to the ER to admit me b/c I desperately needed IV fluids in the hospital. Well it was her day off and I heard the conversation the ER Dr was having with her...he literally had to yell at her to get herself down to admit me...she reluctantly came...... ABout the heart palps.... Yes I wll get an EKG if it persists, but I also have Lyme disease and Lyem will do the same thing as dysautonomia so it is very hard to tell ....... Anyway Guys thanks as always for your support today.... It feels good to just let it out.... I also got on my total Gym and took out all my frustrations !! LOL

I believe "Autonomic Neuropathy" is kind a of catch all phrase for a problem with the autonomic nervous system...... It points to nothing specific, but I know a lot of Dr's use it. They also use this with Lyme Patients and say they have "neuropathy" which means a dysfunction in the nervous system.......

I just wanted to tell you guys that you encouraged me to call my GP's office back...... I get so tired of fightong sometimes... but you are right this is MY health and I am paying THEM for a service! SO I spoke to the nurse again and I said to her I have been having chest pain and heart palps all day, I have dysautonomia and I am not going to run the risk of hurting myself for a sinus infection and that there MUST be some other abx that she can fins to put me on! Anyway just got a phone call back from the GP herself......I am still reeling She told me she is just running out of options for me b.c I seem to react to everything and get this I quote " I need to have realistic expectations with my treatment" and that "there is no magic bullet and that is what I am looking for"!!!!!! Then I told her that I am worried b.c of my heart irregularites and she says " and what irregularities are you talking about" !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am SO SO angry.... I once again told her I have dysautonomia that she is well aware of and how dare she tell me that I have expectations of ANY kind. And if it were her who had to work with severe heart palps or dizzyness she wouldnt even think of it! How dare this women talk to me like that..... Sorry guys but I am so mad. I cannot wait to switch GP's....... the 30th cannot come quickly enough..... Thanks for listening.

Thanks for the support guys..... I have an appt for a new GP end of the month..... I am not comfortable taking the Biaxin..... Especially after I read a report from Neverlands , and it was one of the drugs that was classified to cause possible heart arrythmias and even cardiac arrest. I guess b/c it can cause an imbalance. I also read on the patient packet that it should not be used if you have an electrolite imbalance...! i AM so ANGRY..... I want to call back but I am so fed up with them...... Its so pathetic how this Dr would rather risk a major law suite..... She didnt even send me for an EKG!!!!!!!! I am beyond angry.... again thanks for the replies... I needed to just vent my frustrations today!

I have very little spare time. I go to achool online full time and with household chores and errands, and appts, My day seems to fly by..... I make sure to get some down time by watching TV and just zoning out for a while, or reading a book or magazine......it helps me unwind at night.

sorry for typos....

Hi Guys - I know its been a while since I have put a post on but I have to vent about my GP: I have been dealing with a sinus infection for about a month now. Augmentin did not work, so she put me on Axelox... Wel I got really dizzy from that and called the office yesterday to tell them. The nirse seemed annoyed that I was calling, but anyway my GP then switched me to Biaxin. Well I took one pill last night and had bad heart Palps from it.... I then tried it again this morning....same thing heat palps.... Upon furhter readin about Biaxin I read that it can cause Heart arrythmias and patients should use caution if they have a heart related problem. So I call this morning and tell the nurse what is going on...... She just called me back and told me my GP said and I quote " She is going to have to realize that there are side effects to all abx" !!!!!!!! I said but I have dysauonomia and I am worried that it could be serious. Once again in an annoyed voice the nurse says " NO its not" So now I am worried about taking another one.... I need to get rid of the infection, but I have a GP who dies nto care at all about my well being...... I am SO SICK of this kind of stuff as I am sure all of you are too. I just called a new GP today and have an appt for end of the month..... anyway, just needed to vent.... Still not sure what to do since I now do not have a Dr to help me with this problem....... Thanks for listening

Hi Deb - Are you on an antibiotic to treat your sinus infection? I have been battling a sinus infection for about a month on and off now and did 2 rounds of abx only for it to return. My GP just put me on a stronger abx that is doing the trick.... An infection will take you down, like everyone has said. Anyway I hope you feel better

Hi Gena - a Hepp line is also called a Peripheral line...its just a regular IV temperary line like you would get if you went to the ER.... It can stay in for up to a week as long as it flushes well and looks ok..... I MUCH prefer that to a PICC... Although if I was getting IV's on a regular basis then a PICC might be the better option.

I forgot to add that I have a regular Hepp line put in, which stays in for me very well...... I never went the PICC route. I also infuse over a long period of time b.c that is what helps me .....if I tried to infuse it fast I would end up peeing it all out along with my sodium which would not be good. I do a Liter in about 8 to 12 hour drips.... That way I hold on to the fluids and it makes a big difference.

I have been getting IV at Home for about a year now. I had it set up by contacting my local hospital who gave me the name of a couple home infusion companies. They just needed a script from my treating POTS Dr, and it was all set. It has REALLY saved me in the past year. I ad a stomache vorus this summer that would of landed me in the ER on Fluids, But the beauty of this is you just make a phone call, and they come, put your line in, and they teach you how to start your IV..which is a piece of cake! I am very lucky that my insurance covers 100%.... I am not sure how it works with other isnurance companies though. Anyway I highly recommend doing it if you can b/c it saves SO much angst having to sit in an ER and go through your whole saga to an ER Dr that is looking blankly at you like you need to be commited

I have found strength training to be the best excersise for me... I have a total Gym and It is the best piece of equipment I have ever bought..... I like it b.c you can lay on an incline for many of the excersises, It functions as a pilates performer, plain strength endurance, and aerobic as well. I have learned to listen to my body and adjust my excersise to my day... SOme days I do 40 minutes nonstop, others I only do 15 minutes or so.... then there are days I split it up throughout the day...... The one thing I cannot do is heavy duty cardio stuff..... and I know that many Dr's do not get the fact that this kind of excersiseisnt always good for us. Anyway hope you can find a good balance!

That is A lot of fluid a day , Do you produce excess urine or is your urine still minimal and dark with this much fluid? Withouth the proper electrolites along with the water you could be flushing your system of important minerals which is not good. Have you tried adding electrolites to yoru water such as electromix? What about trying celtic sea salt...I just add it right to my water, but you can also use it on food. I do 1/4 tsp to every liter a drink. At one point years ago I was drinkign like you and got very ill b/c I was overdiluting myself and flushing minerals from my body. My sodium got dangerously low and I was hospitalized for it. I am not trying to scare you, and not saying that this will happen to you sonce I do nto know your complete history, But I would definetly sit down with my Dr and discuss it. I think the key is to add some salt and electrolites..... Feel Better

I have to add that I cannot remember a rude post by you either. I am so sorry that you feel you need a break. I wish you the best of health and maybe you can rejoin us when you feel better?? Take Care of yourself.

I've done lots of salt experiments in the past coule years an dI have to say using the Celtic sea salt has been the very BEST! I use a 1/4 tsp to very liter of water I drink and like Calypso, I am now used to drinking salty water amd liking it! The Celtic salt has a different taste than regilar sodium chloride....kind of a richer taste to me and MUCH mroe enjoyable...anyway, I have bee able to put away my salt tabs b/c of this and Am doing well so far on just the celtic.. My sodium is higher than ithas been in a while.. I was 137 last blood work up where I am usually 130 range and soemtimes 120's.. I hope to continue seeing improvement.

From last year until now my POTS symptoms have improved quite a bit. I upped my treatment for Lyme Disease, and I think I have that to thank for it. I still have not so good days, but nothing where I cannot function.... and I do not have trouble with standing long periods of things of that nature..... So I feel fortunate to be ok for now..... and I hope that I will at least conitnue on this level or possibly better.

I have an ulcer and I can tell you from personal experience that yes it can cause tremendous pain... I got diagnosed last year and was in the hospital a few days b/c of it... I take portonex every day and try to avoid trigger foods like anything spicey or too rough... I still get flare ups... I would definetly see a gastro...he will most liely want to do some testing.... My tests included an endoscopy, Cat Scan, and Upper GI series.... Good Luck and hope you feel better

I tried Noni Juice years ago along with lots of other alternative treatments I was doing at the time. I cant say it did much... I am always cautious of supplements when they seem to good to be true.....

Oh Forget it... I figured it out..Multiple Tick Bourne Infections = MTBI... took my brain a minute...! LOL Actually I am not on that much compared to most Lyme patients , especially my doses.... What are you on?

Hi Fin - I have a Grubb appt in March also...when is yours? I think mine is the 24th... I was not sure what MTBI is?? I am taking Malarone, bicillan, and Bactim, for Lyme alternating Augmentin.... And yes it has helped me get functional again..... I am also doing a lot of alternative stuff as well...... All in combo has helped tremendously.

At this point I am pursuing my Masters Degree in Phycology...I do it mailny online with testing done at college..... I spend the rest of my time running errands, cleaning the house, making lunch/dinner or whatvever falls in between. And working on neverending slew of house projects that need to be done..... I ulitmately would LOVE to work out of my house doing holistic counseling... Thats my long term goal... I definelty have more energy than I have ever had since becomming ill.... Although I have my Lyme treatments to thank for a lot of that I think.

www.lymenet.org has a section that is for Dr referrals... If you email me I can give you the info I know. jljlc@sbcglobal.net

I just wanted to add that even though your electolites came back OK in blood Work that still does not mean you need fluid.... People who are hypovolemic do not have ENOUGH volume to go around..even if the volume that is there is OK as far as numbers go. Dr Grubb explained to me that it is a disconnect somewhere in the brain that the signals to properly hydrate the cells get lost... I use 1/4 tsp of Celtic Seas salt to every liter of water, and add Electromix to the water...... It definelty helps.....