ariella

believe it or not, computer was down again--this time the monitor. Just want to say that just because I've been out of touch, you guys are still in my thoughts.

Generally doing much better on lyme treatment. Finally got over significant trouble in starting the antibiotics, including seizures. I am walking MUCH better. POTS MUCH better (but not totally gone). Still very difficult breathing.

So, hello to all!

Ariella

Any idea if you have an underlying condition causing the POTS?

hi

I just flew 11 hours each way. How long is your trip? I had oxygen on the plane, which helped a lot (could not have done it without the oxygen). The flight back had more turbulance, so it made the POTS worse. It was very tiring, so it may be good to plan some down time into the schedule.

Enjoy!

had I not been persistant, I would have still been undiagnosed.

Persistance is difficult when one is sick.

My POTS doc told me that autonomic stuff is a separate and complex field of expertise, and no, neuros and cardios are not routinely trained to deal with it. Have had to educate more than one neuro, and my cardio seems to think it's no big deal to have POTS, just a little annoying syndrome.

Now that I have been dx, it has helped my family doctor with other patients. Every so often I will get a call from my PCP's office, asking how they can get in touch with my POTS doc (they finally realized the number is in my chart!)

But I know that my experience has educated them to be able to direct someone else.

just got the results today.

problem is we no longer live in the US, and there is no one here familiar with treating or officially dx lyme. I had to fly into NY for a consult for myself.

My kids will be in the US next week for a family wedding, so I'm trying to set up an appointment with a lyme pediatrician somewhere. Gosh this is expensive!

What would be interesting is to see if my youngest has antibodies. She is the only one who couldn't have gotten her "own" infection because she was born after weleft the US. I only tested the 3 symptomatic children. Did not test the two others, or my husband.

Feeling a little overwhelmed. What will I do with a teenager who just started high school with a neuro-lyme herx?

Grateful we caught this, though.

so, my hunch was right. Being that I'm pos for lyme, I checked 3 of my children who also seem symptomatic of something as of yet undefined. All 3 positive. Apparently it can be transferred in-utero.

(although it is possible they got their very own infections. Never saw a tick on any of them despite being in a highly endemic area.)

Gonna be a long year!

Ariella

don't know about the pneumonia shot (but did have pneumonia last year!), but I strongly advise any lymies or possible lymies to speak with your doctor beforehand.

I had a major exacerbation that lasted a long time following the flu shot last year. Now that I know I have lyme, I've been reading that those with the infection are advised against, for this very reason.

thanks for the post

Ariella

so happy for you! congratulations!

Ariella

ps-you're inspiring me to think about going back to school as well.

I've been known to say "sometimes you have to live a little even if it kills you"

at least it was for a good cause.

feel better soon.

hey, at least eyes and kidneys are things the doctors are used to treating....

all the best

Ariella

Dizzy,

Have you had you potassium levels checked? I just looked at a link about diamox, and it said that it can cause real problems if your potassuium levels are low.

You may want to check online about other possible drug interactions, from experience I wouldn't rely on my doctor to remember what I am taking.

Be safe,

Ariella

sorry you are going through this. When "friends" don't support us, well, it's hurtful, but you're not stuck with them.

Does she have some other gripe against you that she is using this as an excuse to ridicule you?

No one needs to accept abuse from anyone. I wouldn't bother trying to educate her. It probably won't work, and be perceived by her as you grovelling for her acceptance. Even if it her accusations were true, for someone to come along and make you feel worthless and invalid is abusive. I would try to keep distance.

I hope this didn't come out as too strong, just really feeling your pain now.

Ariella

unbelievable...but really too believable

almost surprised they didn't insist there is no reason you can't drive...

your new plan sounds good. hope it works.

thinking of you

Ariella

had a HORRIBLE reaction last year that nearly landed me in the ER.

Severe muscle weakness including breathing. Turns out that many lymies can't handle a flu shot (didn't know I had it when I did the shot). So those potsy lymies out there, please consult an educated doc out there before trying this at home!!

Grateful they were able to handle the sepsis...gosh, that's really dangerous. You've come this far to tell the tale, you'll be sticking around a lot longer too!

Time to buy stock in gatorade

luv,

ariella

Hi

I actually mentioned lyme to my endo and she didn't think it was necessary to be tested for, so I don't really know what's next..I would just like some answers, like I'm sure all of us here do!

Same here. My GP didn't even take me seriously when my western blot came back positive. My neuro couldn't believe it either, and would have been more comfortable telling me I had ALS. Everyone involved had no problem maintaing me on 40 mg of prednisone!!!but didn't even want to explore the possibility of lyme.

They were taking what they knew about acute lyme and applying it to chronic neuro lyme, which is a different animal altogether.

I went on for further testing, and was positive in another (not-tick specific) lab as well. I do not recall a bite nor a rash. (possibly a bite, for sure don't remember a rash) This was probably 16 years ago.

It angers me that they let their "lots of crazy people think they have lyme and don't really have it" attitude get in the way of me even having proper testing done, let alone proper treatment that may help make me once again functional.

Not saying this is what you've got, but it angers me that, especially as there is no differential being considered, that they won't even test you for this. I'll bet they tested you for lots of much more obscure things.

Sending hugs

Ariella

hi

have you been tested for lyme/coinfections at a reliable lab? Babesia, a coinfection that comes with lyme, is famous for what you describe. I also get seizure like shaking chills, sweats etc. at night. I come out of it with a massive headache usually. ( I am positive for lyme)

Anyway, seeing that you're from the NE, it may be worth checking out. Problem is the tests for coinfections are known to be even less reliable than lyme testing. The lab report said they pick up the coinfection in only about 20% of cases. So sometimes the only option is to try specific antibiotics for a couple of weeks to see what happens.

Ariella

Hi Lauren

apologies for not keeping up with the posts, neuro lymie here (confirmed with two positive western blots from 2 separate labs). and having a really hard time reading, especially from the computer.

I am happy for you that you found a compassionate doctor. It makes all the difference.

Ariella (currently tripping on antibiotics)

I'm starting on CoQ10 for the brain fog, I'm not remembering to take it often enough to know if it is working!

Good luck with the homeschooling.

Happy Birthday Friend!

A year of imroved health and lots of happiness

Ariella

hi folks

just a quick note to say that my hard drive crashed. I'm now at an internet place. Looking forward to saying hi again when we straighten this out

love

ariella

you may find this article helpful

http://www.canlyme.com/leigner.html

---

LOL I have the symptoms for MG without the definitive test results--how 'bout we go to the dr next time together, between the two of us we shoulkd get a good treatment plan going!

from what I understand, 41 indicates a tail, the way a spirochete gets around. There are other spirochetes besides lyme, so this alone doesn't prove lyme. Or disprove it.

Many patients, and from my understanding, often those who are worse for the wear, are seronegative, but actually turn positive once antibiotics are given and the germ begins to fight back. You may want to ask for a trial of antibiotics and retest.

To put things in perspective, I was put on steroids for life for a supposed autoimmune disorder based on one suspicious test result (same as indeterminate) and a positive response to medication. In light of this, I personally don't see the harm in giving you a trial of doxy for a couple of months. Except that lyme is a politically heated and controversial diagnosis, and MG is not....ah, frustrating.

Corina,

You mentioned that you aren't happy in your current house. It may be worth giving a lot of thought as to why, it may help you make the decision.

good luck!

Ariella

about myasthenia...

I don't wish it on anyone, but, the positive achr and emg (was it an sfemg) should confirm a diagnosis, even without symptoms. You may want to do a google search about achr antibodies, but to the best of my knowledge, unless you were bitten by a snake (yes, there is some lit. about that!), a positive achr should be diagnostic in and of itself. There are a couple of possibilities that would cause a false positive, but highly unlikely.

here's one link:

http://128.252.151.78/neuromuscular/mtime/mgdx.html#AChR

I was (mis)diagnosed with MG for about a year, so I've done lots of research (my achr was negative). My doctors also wanted to blame everything on POTS, but my POTS doc wouldn't hear of it. Is it possible that the overlap is going in the other direction---symptoms that you may be chalking off to POTS may be MG?

In my experience, MG is something that should be dealt with by a neuromuscular specialist, not a regular neuro. They are often clueless. Braintalk forums should be back on the internet the first week in September. You may be able to get some useful direction from the MG forum there.

Sorry you are going through a runaround again. You must be very exhausted from it. I find the runaround more draining than the disease sometimes.

All the best,

ariella