Jenn202

Hi Guys - Emily and I correspond quite a bit and she gave me permission to give you another update on how she is doing.

As of this week she is getting IV fluids which is helping somewhat. She is a tiny bit stronger than last week and the goal of her Dr's is to get her stable again before continuing on anymore treatment.

She has a good Lyme Dr who is working with her POTS Dr.

Lyme Disease has been confirmed which is why she has been on a trial of Doxicyclene. Unfortunately the herxheimer reaction was too much for Em, thus causing this set back.

For those who are not familiar with a herxheimer: It is a reaction to the Lyme bacteria Dying as the antibiotics kill them. This can cause major exacurbations of any and all of your symptoms. Its usually a trade mark reaction for anyone infected with Lyme. In time The herxhiemers become less and you start to feel better, but its not fun to experience one.

Of course Em has one of the greatest attitudes I have ever seen and I am always in awe of her!!

Once Em is stabilized and feeling better her Lyme Dr hopes to try another antibiotic at a very low dose again.

For now she is taking it easy, and I know she thinks of all of you and misses posting on the board.

I also cant wait to see her back on here.... she is a real trooper through everything!

I'm sure She will continue to keep everyone on here updated through myself or Melissa.

Name: Jennifer

Birthplace: Danbury CT

Kids: 1 great nephew

Pets: 2 cats that act like kids! A mixed siamese ( all black) and a grey short chubby tiger.

Favorite Color: Blue

Favorite flower: pink roses

Kithchen theme: black, white, and stainless steel.

Favorite drink: I dont drink anymore but Pina Coladas, Malibu and pineapple.... Now I want one! LOL

Last TV show watched: Designed to sell

Last movie you rented: usually order from PPV.. ordered Skeleton Key...sholud have saved the $$!

Favorite food: Pizza and chocolate but I rarely eat either unless uits an all matural yeast/sugar free version.

Favorite TV show: House, American Idol, Dr 90210 ( dont know why this one gets me entertained lol)

Red or Pink: Pink

Favorite Ice Cream: dont eat dairy anymore, but chocolate is my favorite.

Favorite crayon Color: Pink or blue

ever bungee jumped: Nope ... I have enough adrenaline in my life

eye color: Green

Hair color: Dirty blond , but I get it highlighted

Farthest you ever been: Germany, california, washington state ( beautiful), montreal.

Siblings: I sister

Last time you cried: few days ago

Favorite Game: Trvial pursuit 80's version....

Black or white: Both

Rolling stones or the Beatles: Never really liked either

Last food you ate: Organic oat cereal with rice milk

Diamonds or saphirres: Diamonds

Beach or the mountains: Beach

sweats or jeans: Jeans

Ever went skinny dipping:

Married more than once: Married for almost 4 years to a wonderful supportive man...been together 12 years....

What book are you reading now: Shamanic Journey

Hobbies: Shopping, Spending time with my family and hubby, reading, surfing the web, TV, learning about holistic healing.

Favorite actor: Dont really have one

Favorite actress: Dont really have one

Favorite candy bar: M and M's hands down... But now I resort to Pre De lite low carb sugar free chocolate bars when I have a chocolate attack. Oh and russel stover makes a pretty good sugar free M and M.

Ever toilet papered someones house: Nope

Gatorade: Dont like all the jumk in it... I drink electromix all antural from Health food store ..cant leave home without it!

Favorite fruit: bannana

Men with facial hair: Dont like it, although it works for some.

Gold or silver: Gold

Dream Vacation: Florence Italy

favorite singer: I like lots of them so hard to say... Listen to lots of enya, sade, Nora jones, but also like staind and creed

I have a "mysterious" bladder issue that causes similar problems as you....burning, pelvic cramping into lower back, Hot urine etc etc....

I have had tons of tests done...everything inconclusive.....

My urologist feels its the Lyme bacteria that has invaded my Urinary tract or Interstial cystitis....

I take batrim to stop the problem and it works...

BTW: Theres a good forum for IC... I believe its www.ic-network.com

Lots of good info.

Feel Better

LuLu - I have been through what you are going through for years and years....

I finally found my POTS Dr, and then seeing Dr Grubb to confirm last year, they helped me get IV fluids in my home through a Home infusion company.

Boy I know the feeling..they make you feel like you LOVE to sit in hospitals and get a needle stuck in your arm for IV fluids, like you are some IV junkie!!!! It makes me so incredibly furious and if you look up this topic you will see I have vented about this many times...

Its ridiculous.... Dr's give out toxic, damaging drugs all the time without thinking but to get an order for some stupid sodium chloride or lactated ringers is like we're looking for cocaine!!

I;m not sure if you have a POTS Dr or an understanding GP? I would go through them..... I wish everyone could see dr Grubb b.c it is such confirmation that we are not crazy....and his write up is so validating when I bring it with me to appts.....

Anyway, I hope one of your Dr's can hlep you get this set up at home...

BTW: You have been checked for all possiblities such as diabeties insipidus right?

Also make sure to add salt to your liquids.. I use celtic sea salt rather then processed Sodium chloride...

Celtic contains lots of good minerals your body needs... Also Electromix By Alacer has all the esential electrolites without the sugar and other additived that they put in Gatorade/pedialtie and all the other store bought stuff...

You can get Electromix at your health food store.....

I hope you feel better, Keep us updated!

Hi and welcome!

I am just like you.... My hydration issue is my biggest problem I face.

I ended up in the hospital about 5 times b/c of it....

a couple years ago I got very bad and was drinking about the same as you hot, constantly thirsty etc... I was hospitalized for IV fluids or at the ER all the time....

I did a trial pf DDAVP which helped for a little while but not long......

I have now found some tricks that help me.

When I was drinkign all that fluid one thing that I was doing unknowingly was not adding the proper balance of electrolited to my drinks and in turn I was urinating out all my electrolites causing my problem to be worse thus this viscious cycle....

Now I drink about 3 t0 4 liters of Water with Electromix added to it....and for evert liter I put a 1/4 tsp or more of celtic sea salt into the drink... This helps keep the balance you need.

I also have a standing order for IV fluids at home which has been my lifesaver......

I also wear compression hose which seem to help keep the fluids up near my head.

I am still in the process of figuring this part out but for now these are the things that help me keep a baseline....

I will keep you updated if I find anymore info......

Take Care if youself and feel better!

Macrobid is a very mild abx...... And if you truly do have an infection the only way to get rid of it is to take a course of abx.... The alternative could be the infection getting worse and making your POTS worse...

Usually the treatment is only 10 days or less which is not a long time either......

I am STILL dealing with the flu that hit me about 3 weeks ago! It is horrible so I really relate to you.

Mine is mostly my stomache and I have run a high fever on and off,,,,just when I thought I was getting better...round 2 came! Or maybe it was round 3??!!

I wish I had some really great advise, but I think everyone here already gave you good suggestions.. I have been trying to rest as much as possible, but I am not too good at that.... Also trying to eat as well as I can with a stomche thing , drinking protein shakes to make sure I get good nutrients in no matter what.....

Feel Better soon!!!!

Alpha Lipic acid is good for liver detox... I use it b.c of my long term abx use to help keep my system clean.....

I also think it is a powerful antioxidant.....

Here a link abut the supplement:

www.nutritionreporter.com/alpha-lipoic.html

Hope it can help some!

I have the same problem.... I am so med sensitive and some drugs I have "pushed through" b.c the Dr's made me feel like I was the only one who ever felt bad on them, and I always regretted it b.c I would pay dearly and it would take a me long time to get back what the drug made me lose...

I have had a bottle of mestinon for almost a year now... I have tried every week to take a pill but something tells me not to...

I go with my gut now b.c usually if I follow advise of dr's and go against what I feel inside its the wrong decision.

For the 100's of times I have been in the ER the ONLY time I got immediate, constant care and attention was when I was having severe abdominal pains where I was screaming.....

After a whole day in the ER all the speicalists could not figure out what was causing the pain, although I was STILL in excruciating pain.

There was a snow storm comming in and they wanted to clear the ER so they decided to send me home and said I had some sort of virus, and gave me another pain shot.

Even the Nurses were Like " why in the world are they sending you home???!"

Long long story short, I got back home only for the pain to get even worse I was in agony and knew I was in danger of some sort..... Thankfully I ended up going to my mother's house instead of back to my own b.c it was closer to the hospital "just in case"

Well I had to get back in the truck we drove in one of the biggest blizzards the NE has had in years..Highways were closing etc....

Get BACK to the ER....still screaming bloody murder, and of course they jump to get me back in.

My white blood cells went sky high, and my ultrasound showed fluid in my lower abdomen where my appendix should be....

The surgeon on that day told me it was not my appendix b.c he could not see it on the CAT scan or ultra sound.....

Come to find out my appendix was wrapped around my intestine in a hidden place, had burst and I was in serious danger...they did immediate sugery......

I ended up OK>...

But moral of this long story is:

I had a TRUE ER emergency that should have easily been diagnosed and helped, and even I was sent home being told I had nothing wrong when in reality I would have lost my life.......

ER's are Bad!

Wearing compression hose helps A LOT...especially running through the airports to catch connecting flights etc......

Also I get up and move around at least every 1/2 hour or so...use the bathroom, etc,,,,

When I am seated I extend my legs and rotate my ankles periodically as well........

and of course like your Dr said stay well hydrated and bring salty snacks with you.

I have never had a problem with flying yet so I hope you will have a safe trip

I drink a protein shake every morning called Jay Robb egg white protien.... Its all natural and does not have all that artifcial junk that those boosts and ensures do.... ANd does not have sugar in it either.

Its all protein though,,,,,

you can check it out on www.jayrobb.com

Wild Oats sells it or you can order it through the web site.

I blend it with rice milk, ice, and I add goat whey....

I used to use one but for me everytime I used it my ears got blocked up and painful.

I think it is good for keeping sinuses clear but if you have an actual infection in there the pot could push the infection further into your cavity.....

I am not Dr so look up that info just to be sure b.c I read it a long time ago and I saw an EN and Throat who told me that.

Hope it helps you get some relief!

Everyone gave great advise, but I VERY much agree with Michiganjan: I am 34 years old and have been dealing with a chronic illness for about 12 years now.....

The one thing I have learned is that I put myself ,my well being.,happiness and health first and foremost and make NO excuses to Anyone about anything that has to do with illness.. I also relaized that in this world if you have 1 TRUE friend then you have done very well.

I surround myself only with positive energy and people that make me feel good. I discarded many many "dead weight" so called friends such as the woman you describe that lives in your complex...life is too short... Be in tune with other peope and how they make you feel...you'll know right away if they are a good fit for you and if not never feel bad for letting them go.

Just a thought: I wonder if You could start some sort of group at your home....Either in a hobby you enjoy doing, or a group of people in your area with chronic illness...you would be suprised how many are out there that have health struggles.....

I have friends of all ages.... I have realized that age is only a number and you can connect with anyone if they are the right person in the right place at the right time for you.

Hang in there...... I can imagine how difficult it is for you to be far away from home and family but keep trying...you I think you will find some nice people that you will enjoy eventually.

I just wanted to add that it is very very important to have the proper medical care while testing and treating conditions such as these...... A good LLMD along with a POTS Dr and GP or whoever else is nessesary will monitor progress, admit to the hospital if nessesary, and continue to check blood work, vitals etc etc.....

there is a lot of grey area and I think it is very improtant to be able to sort out as much as possible through a Dr's supervision.....

When I was very ill I had so much going on that had I not had the proper testing and continued to endlessly seek out good Dr's ( lots of trials to find the good ones), it would have been very difficult for me to try and guess what was going on.....

Yes I did have Lyme disease and coinfections and still do , but these things have caused me to have POTS/dysautonomic like episodes along with some other new things I am currently exploring......

B/c of these other problems I need certain things to help me along with the Abx treatment such as monthly monitiring of Blood Work, IV fluids when nessesary, vitals checked, and additional testing when required...

So I think to really know what you are dealing with in ALL aspects is so very important so that you can treat feeling safe as you go along.

We have had a nasty stomache flu for about 2 weeks now... It has really got me ill and my mother just called me to say she is feeling sick to her stomache... Needless to say I told her not to come over until she is completely better.

Dont feel guilty for turning people away... Its your health and you are the one who has to suffer if someone brings a germ in...... I'm sure your mom understands.

I agree with blackbird....The Lyme tests are not accurate...they only drtect antibodies to the disease.

If some one has had Lyme for a length of time their bodies stop making antibodies against it b.c eventually your system recognizes that Lyme Bacteria as its own instead..

I had lots of negatives , but that does not mean anything... Only someone who is Lyme literate can actuallyu diagnose properly......

Its hard to have been through what I have been through and then see so many on here in similar boats ...it brings me way back when I was SO ill with little to go on and Dr's telling me it was all in my head...

Believe me I am not saying everyone with dysautonomia has Lyme and coinfections, BUT I would never not thouroughly rule that out... Had I not been treated I have no idea where I would be... As is I have damage that the antibiotics cannot fix from so many years of misdiagnoses....

Anyway feel free to email me if you have any questions...... Take Care.

I have had my appendix out ( emergency Surgery) as well as all 4 impacted wisdom teeth.

I did fine..... I never really saw a major problem.... I made sure I had IV fluids.....

I am sure everyone has different experiences though so its hard to say how you will feel

I think the biggest advise would be to make sure you have set up what you need that helps you feel better...such as meds or Fluids.....

I hope your surgery goes well if you have it. Take Care

I have Lyme and it is a very common link with POTS......

If you in any way suspect Lyme I would definetly get to a good Lyme literate Dr

www.lymenet.org is a good place to start.. most of the good Lyme Dr's are on the East coast but I do know there are others as well and Lymenet has a section where you can post for one.....

Like Dr Grubb Said: POTS is usually an effect from something else.....its very rarely just comes on by itself.....and to isolate the true reason for it is important if you can...

Lyme needs proper antibiotic treatment and can cause a bunch of neuro problems. Mine went undetected for years and I have payed the price unfortunately, although antibiotics have saved my life and gave me a life back as well.

Good Luck and feel better.

Just remember with all antibiotics you take to take acidophillus to replace the good bacteria that the abx wipe out of your system..... Take them 2 hours after you take your dose of abx....

Feel Better

I agree with everyone who has responded that the ER is such a stressful and cold place that it only makes me feel worse whiile in there.

I am lucky to get my fluids at home..... I only do well with a slow infusion of 8 or more hours b.c I retain the fluid in my tissues if not....

It is also SO mush less stress at home... You are comfortable in your surroundings and I just go about my business while hooked up ....... Just drag my pole aling with me! LOL

anyway if you do not feel better with them then maybe they just do not help you or maybe you could give the lactated ringers a try...they have much more in them....

When I am sick wityh a flu bug I do 1 liter bag of saline a day and it is one of the biggest helpers I have ever found!

I used to have to go to the ER and go through tons of nonesense just to get a couple bags.. Now I can hook up whenever I feel like it and my Home infusion company is great,

And I agree with the other poster that insurance most likely wont bark at it b.c it keeps you from the ER/hospital which is a FAR greater expense....

When O have my fluid issues I feel like I am in a shock like state... I get very pale and I feel like I have no blood in my head... I dont pass out but I get these waves that come through my head and I get shaky and hot.....weaker.... The fluids usually correct it.

Thank you so much for the links calypso! Any info I can get on this helps!

Gosh I am SO sorry you are going through this ordeal b.c I have been there.... I have needed IV fluids for years especially when I get down with a virus, or have a procedure done and I have had to fight for YEARS to get them to give me any...

I always would end up in the ER and have to go through all the crap to finally get a couple bags....

My POTS Dr in Boston after 3 hospitalizations in 2004 for IV fluids finally got the picture that there was NO WAY I could orally hydrate...

Then seeing Grubb he helped confirm that I could DRINK FOREVER and NEVER hydrate properly b.c of improper signals being sent to the different parts of my body... Way cant they GET it!!

Sorry to vent on your vent, but this topic always urks me b.c it is so ignorant not to give IV fluids when they will easlily give out pain meds, antidepressents and a slew of other toxic thiNGs without thinking.....

DId you try contacting a home infusion company?

I hope you can find some help soon...and I hope you feel better....

Take Care

I take Zorvirax a prescriptinon antiviral for mine.... It has helped tremendously! Although I owuld like to so somethign more natural long term . I have been researching L Lysince since this was what was used to keep the herpesd virus at bay years before antivirals came out.

Funny thing is my cat has active HHV6 and when hers gets activated I give her 500mg 2x a day of L Lysine in her food...

Of couse talk to your Dr about that one before you take what my cat seems to feel helps!! LOL