Jenn202

I am not a Dr, but from my own many experiences you sounds dehydrated and probably need IV fluids.... I hope you can get to your GP soon. Feel Better.

I'll add to everyone elses post.. Go to a Dermatologist ASAP.... It is good to go at least once a year for a check up. I have had numerous moles removed...its not a big deal at all....

I a, also sorry you feel so dissapointed. I know how it feels to not get responses to very important questions... I have been on boards that have done this. I can assure you that everyone on this board are very caring people...... Sometimes with me I only have a litmited time so I scan the posts really fast and only answer 1 or 2..... Like the others have said... This is not a "clichy" site. I was a new commer this past winter..... Anway, hope you feel better

Mestinon is the other drug used to help consrtict blood vessles. Supposedly it does not have the side effects that the other do as far as raising your BP... Also Compression Hose

When I saw Dr Grubb in April he pulled up a picture of a woman slumped over a chair and a Dr taking her pulse... the pic was taken in the 1600's Dr Grubb also told me that he has found literature from archives in England from the 1800's documenting this problem. They just did not have the technology at the time to do anythiung about it.

Em - I'm on my way after this post to email you back! But yes if you can start Doxi, I would. Its a good basic Lyme drug....it definetly cannot hurt thats for sure! Ahhhhhh!!!! These Dr's Drive me crazy! I hate the stupid controversy surrounding this disease... Lyme controversy is POTS times 20...its just so ridiculous.....There are thousands upon thousands of people in tis country that have Lyme and rely on Long term abx treatment to function. I am one of them. I am not thrilled that I have to take abx to feel half way normal... BUT I am SO incredibly thankful that b/c of them I can have happiness and enjoyment from my life again...... Jess - Yes Lymenet it very difficult to navagate: If you go to the forum Part ( Lyme discussion) and click you will see on the top where you can Register...you just need a username and they send you a password...... They just redid the site so its even extra hard especially with my brain lately! LOL and I cannot imagine haveing 2 little ones running circles as well! LOL Let me know if that works for you or not. bamagirl : You just said it all in your post.... The people who are so ill they can not hold there heads up ( I was one fo them) are usually the ones with tick bourne illnesses...... I have never seen , and hope I dont again, a disease that can be so debilitating in EVERY way... I remember having to be helped into a Dr's office b.c I could not walk I was so weak, and Could not get my head up and the Dr's faces would have this perplexed look like they had NO idea what in the world coudl be wrong with me. It was the worst feeling b/c I was SO sick and SO scared and even Dr's looked like I was this crazy case! Welcome to the world of Lyme I guess lol

I hope this post is not getting too off topic..... Iknow this forun is for POTS discussion ... Michelle, Nina, please let us know if so b.c I would not want to disrespect the board,,,,, Also maybe all of us with Lyem can start an email chain to keep connected

Hi Jessica - I would definetly urge you to get treatment as soon as possible and a good LLMD.... Only a Lyme ltierate Dr knows the disease and will give you the proper tests, and treatments... Its very complex as far as abx goes..... You usually need several in combination or IV abx or both..... In my 8 years I have been on: 8 weeks of Doxicyclene 8 weeks of IV Roecefin 61/2 years of IM Bicillan injections 2 1/2 years of Biaxin and Plaqeunil and tetracyclene alternating 8 rounds of Mepron and Zithromax And I am currently on Bactrim, Augmentin, Malarone, Bicillan. and will be adding Erythromycin and Biaxin...... I think the fact that your Dr will not give you abx b.c you are breast feeding is not a good sign.... Lyme has been known to pass into breast milk....and its more important than ever to be on abx if you do decide to breast feed.... If you post on www.lymenet.org there are many women on there that are in or have been in your boat...... Please e mail me if you need help getting the right treatment.

HAPPY BIRTHDAY!! I wish you a happy and HEALTHY Year

Do you happen to see Dr Novak at Boston Medical? If so he is also my Dr.

The other difficult thing abut lyme is that there is so little research.... There at leat 250 strains of Lyme Bacteria alone that have been disovered, and Several hundred strains of the different coinfections.... Lyme is definetly not a "one sixe fits all" disease. It matter what strain or strains of Lyme and coinfection you have as well as your genetics and immunity, and how long you have had it. There so many factors in it. Also the longer you have the Lyme sphirochette in you, the more they penetrate deeper into you, and end up causing your body to stop making antibodies to the infections. After a while the body does stops identifying it as an "invader" This makes the current testing incredibly innacurrate Lyme also has a knack of changing form to evade the antibiotics after a while...they can actually change their DNA make up...... so its important to keep on going until you find the combp that is right for you. Also its important to address candida in your system...eat a healthy sugar free diet as much as possible and take lots of acidophillus as well as a good immune suppoty supplement...... I have gone into complete remission when I get on a high enough dose of Abx... I went from bedridden and completely incapacitated 8 years ago, to about 80% funstional..... I still have mild POTS, and my hydration issue seems to be my toughest point..... But I have recently switched from Salt tabs to Celtic and himalayan sea salt 1/4 tsp to every liter of water and it has helps along with some other supplements. I am SO glad you are seeing the Fog lifted a bit!! Lok forward to your me email

I am SO sorry you have Lyme, But on a brighter note, Lyme is absolutely a cause for dysautonomia, and with further treatment you could feel much better. Of course I am not your Dr, but just from my expereince and knowledge of Lyme and dysautonomia. Are you seeing a good LLMD? Its important to have one of the Lyme literate Dr;s so that you are properly tested, as well as tested/treated for all the coinfections as well. www.lymenet.org is a very good site to go to with all the Lyme info you can ever read and adiscussion forum as well. You can also email me anytime... I would be happy to help you any way I can. Its hard to get through the treatments but believe me you will come out the other end. And you are right Lyme is just as or if not even MORE undiagnosed and misunderstood than dysautonomia.... Its a true nightmare of an illness to have... It also takes time to find the right combo of abx that will help you..... Again feel free to email me anytime..... jljlc@sbcglobal.net Take Care

Hi baby boy - I agree with Morgan that you should possibly seek some counseling. There are lots a good meds that can help with your level of anxiety. As we all know anxiety along with POTS is plain aweful and can set us into a tail spin. I know that I can get episodes of not feeling well if I know I HAVE to be somewhere at a certain time or have some big obligation comming up... For me I thik its the anxiety of not knowing how I will feel and if I will make it to the event or not..... Anyway, I hope you feel better soon

Hi Nina - No one here thinks your nuts at all for having goals! I am a BIG believer that Physical health follows right behind Mental and spiritual health. I have seen it happen time and time again. Good luck and glad that you are on the mend a bit

I have always been very thin my whole life anywhere from 95 - 100 lbs.... I am at my highest weight now at 5'5 and 109lbs..... I do feel better with the extra weight on, I also contribute it to working out and a lot of muscle development since I am still a size 1 -2 in jeans.....

I was at Mayo 2 times this summer . Dr Low never brought up anything about a new drug... Only mestinon.... I was not oneof the chosen ones for his study... Wont get into anymore except to say I am very intersted in this article/research that Chad has found.

I just have to add my experience with a flu vaccine back in 1995..... I was not feeling great at the time, and still unaware that I had Lyme Disease so I was pursuing testing and dr's trying to find out what in the world was wrong with me. My Dr at the time suggested I get the flu vaccine so I would not get the flu. I got it, and it was the biggest mistake of my life. I passed out 10 minutes after getting it and from there I became debilitated, bedridden, the room spun for 8 months with no let up, I could not lift me head without help.... This went on for 2 years ..I finally got siagnosed with Lyme and as the years and passed and I got more Lyme treatment things got better. But I believe the flu shot was the catalyst that triggered my immune system and brought out lots of things in my body. I will never touch a vaccine again as long as I live. I am not writting this to scare you and to make you think that it will happen to you, but just to give you another perspective...and maybe to research these vaccines a little more.

I get what is called "third spacing" where my water goes into my tissues. I mainly get this in my legs and arms and at times have had it all aorund. I learned from dr Grubb that in my casemy Hypermobility and collegen issue come sinto play as well as my lyme disease. Both have weakened my collegen and my veins become "leaky" as he called it...this in turn displaces my fluid intracellular.

I am comming down with a cold today and the best stuff for me is Zicam Nasal gel...its homeopathic and if you get the cold in its early stages it will cut it in half... Also I take lots of vitamin C.... I use Emergen C by Alacer and take a packet every few hours the first day I come down with the cold, then a coupel packets a day after that. Of course check with your Dr about taking vitamins etc...since we all have different reactions to things. I hope you feel better soon!

I would definetly discuss this with your Dr. I spoke about this with Dr Grubb my last visit with him. I am similar to you where my POTS is mild. He was optomistic that with proper meds, and the right team of dr's such as himself and a good high risk OB/GYN that pregnancy could be an option. I think if you are comfortable with your current Dr, then you can discuss all the pros and cons with him to make your decision. For myself I am on the fence about pregnancy... I am 34 so I have been actively thinking about it. Good Luck with making the right decision for you

I have been doing home Iv saline for about a year now. That have been a lifesaver for me! I ususally use them when I have a bug of some sort and have also used it when I was in a slump... It has kept me out of the hospital and ER more times than I can count...... It also helps my body to get through the hard tome much easier... I would definetly try it. I hope you feel better very soon

Thats great news Ernie!!!!!!!

I opted not to have anestisia and instead went with Versed which is a relaxant , as well as novacain. I would so glad I didnt end up with the anestisia b/c it was such a QUICK procedure.... I was done in less than 10 minutes from the time I entered the room....! I had 5 teeth removed in all. 4 badly impacted.... The whole thing went vert smoothly.

I have had 3 MRI's with the contrast dye... I did fine each time ...no reaction at all....

Its definetly interesting since I have been told time again to "stop drinking so much water"