ariella

Probably the best way to raise money for dinet is for us to get all our stories togethr and publish a book. Bestseller, guaranteed. lots of love, Ariella

Wishing you that it should be easy and productive. Ariella

Sara, Just read your other post, so I know you've been down the lyme path unsuccessfully. Familiar with lots of the tests. Do you have anything going on with your eyes? MG often hits there. My advice would be to see a neuromuscular specialist as opposed to a regular neuro, if you don't want a runaround. Hey, if it is MG, it is treatable. If you need anything, I'm here Ariella

Aye. Best described as "gotta sleep now or I am going to DIE!" I go to sleep. Usually only for about 10 minutes. Then I get up spontaneously.

I've had this big time. I was diagnosed with myathenia gravis. Even responded to mestinon at first. Then my muscle weakness worsened despite treatment, and the doctor started questioning the MG dx. Started looking for things worse than MG. Tested positive for lyme last week. Can mimic MS, MG, Parkinson's and ALS (which for one heck of a scary time, is what several people including a few doctors and myself thought this may be). Turns out it's not. Problem was that I was treated with steroids for the MG (which I don't have), which worsened the lyme, not immediately, but over time. If you need MG info, let me know, been there, done that Definitely worth a neuro evaluation in either case. Not fun, but necessary. How is your breathing? Ariella

Happened just a few days ago. Got real woozy, and had to sit down on the sidewalk. Rather sit down than fall down. Embarassing? yes, but if I didn't leave my house I would lose whatever is left of my sanity, so for me it's totally worth the risk. I find that the more I walk, the more I am able to walk, and get deconditioned really quickly. So as hard as it may be on some days, I force myself out (even in bad weather), so I don't get "out of shape" You may want to carry water. And a cell phone. Ariella

hey Corina! if your doctor knows that a negative lyme test doesn't rule out lyme, he's more educated than most. Any idea which test he ordered? The ELISA is known to be highly innacurate, especially for chronic lyme dx. Western blot is considered much more accurate. good luck with testing, and also with the ritalin. Why does your doctor think that ritalin will help your concentration? best wishes! Ariella

Good news is that my dr. today approved oral abx to get me to a place where I can fly to seek the opinion of an LLMD. Hoping it works! Thanks everyone!

thanks folks well, everything is at its worst now. We do not know what the pressure in head/stiff neck is, but encephalitis has not yet been ruled out (and a strong possibility with the positive lyme test). We've been ignoring it and taking advil. Going to the doctor first thing tomorrow If I was baseline now, I would consider the flight and ask for 02. Far below baseline for now. My brother is getting married in November, going to try to get someone to give me some oral abx until then. I was in an elevator today, went 4 floors, and felt very very bad. Hope this plan works. Very foggy now, having a hard time thinking.

wow I now see tha irresponsibility goes both ways. Sad to know that your doctor is not objective, just seeing what they want to see

very bad spot actually. possible encephalitis from the lyme. ID dr. rolled her eyes at me today and said that there are thousands of people with positive lyme tests who actually don't, would only like to believe they do. Then she admitted to having no idea how to read the western blot results, and said she is incapable of reading anything that doesn't go through her own lab. Next! IV and 02 not a bad idea. My whole family is in New York, and I would stay with my parents. I have 5 kids, though, and can't see myself leaving for more than a week. Using 02 now for POTS, as the medicines aren't working, it's usually helpful. I need to think this through and my head feels too darn swollen to let me think. Still waiting for GP to answer my "urgent" call. thanks

sorry for the brevity, pressure in head, can't sit at the computer. looks like it's unlikely I can get proper care for my lyme here. It is an 11 hour flight to NY. Last time my POTS was out of control as it is now, the autonomic doc advised me not to fly. Anyone given similar advice? thanks Ariella

Helped me (a lot) for a while and then stopped working. As did mestinon. Ariella

Nina, Sorry you are feeling unwell. ENT stuff is a misery. Last year I had lots of fluid in my ears, I remember going to the docttor and saying THIS I can't deal with any longer. Almost comical with everything else that's been going on, but that's how I felt at the time. Your story about your kitty reminds me of a Seinfeld episode-Kramer got sick and agreed only to see a vet. i think there's something to this. Just read somewhere, for example in regards to lyme, that most vets are better educated about lyme than the average GP! Hope you're feeling better! Ariella

Either sit (if that's possible), keep walking, try to drink water, and AVOID PEOPLE! Nothing like having a conversation when your heart is pounding and you feel unfocused. My experience is that people around me usually cannot tell when I am feeling unwell. Ariella

As someone who has recently had a positive blood test for lyme, I've learned a lot that had I known 15 years ago, I may not have been where I am today. Among those things I've learned is that 50% of lyme patients don't remember the bite or the rash. I have a positive western blot specific for lyme -active infection- and do not remember either. Additionally, the original screening test that is used, the ELISA, is said by lyme doctors to be worthless, as having a 50% false negative especially for chronic lyme pateints. Chronic lyme and acute lyme are not the same animal anymore! Some doctors would know to suspect acute lyme, but few would be able to identify chronic lyme. Some even deny the existance of chronic lyme. I've passed my arthritis stage long ago, cardiac/POTS symptoms began 12 years ago, and I am now a neurological mess. I use a cane or wheelchair , have severe breathing issues, cannot focus or read for too long, muscle issues all over the body to the point I was being evaluated for ALS (lyme can mimic that and many many other diseases) My point is not to tell you that you have lyme, just that IMO an evaluation is in order, and needs to be done properly. I had a negative ELISA 7 years ago when my symptoms were like yours, and was told not to worry about lyme. I didn't. And today I am not functional and have positive serology. If you would like a referral for a lyme specialist in your area, let me know, I can find the listing for you. Hoping you get some helpful answers soon! Ariella

Read in "the guidelines" that lumbar puncture is only accurate for neuro lyme in late cases such as mine in only about 13% of cases, even when meningitis is involved. Discussing it with the dr., but to me not worth the risk. My experience is that although a test is known to have only 13% reliability, if it is negative, it will be used to "rule out". Doesn't sound too scientific or therapeutic to me. Anyhow, if I'm being treated anyway, not sure what even a positive LP would add to treatment.

Unfortunately hitting a little red tape in terms of treatment. PCP is misunderstanding significance of results, as I am positive for current infection and negative for exposure. Lab says that it's typical of late stage/chronic lyme. Pediatrician says the same. PCP is misinformed, and he is the one who needs to order treatment. Very frustrated...but working on it! Didn't come this far only to drop dead knowing why! Even PCP says that "if" this is lyme (which has now been established in bloodwork), I have neurological lyme. If that gets left untreated, my friends, I can develop some serious psychiatric symptoms! One interesting thing, spoke with the doc at the lab, he said that he worked with a doctor in Israel--guess who? The first neuro I was sent to to rule out MS! Small world. This dr. was my dr. up until my POTS dx. Middle of the night here, gonna try to go back to sleep. Thanks for everyone's good wishes. I'm not going anywhere so fast---POTS symptoms are raging now! Ariella

The getting up on time thing is challenging. Not only do I have POTS, but pretty sure my 14 year old daughter does as well. You can only imagine the struggle to get her up in time for school---teenager with POTS I have (probably wrongly) accused her of being "unmotivated" many times.

Kim, I'll PM you. I hope you are improving with treatment?

results are in. glad they found it, as POTS meds are no longer working and I'm a mess. Getting a consult with a lyme doc. Ariella

Hi Want to congratulate you on your pregnancy. We have 5 children, onset of POTS symptoms occured after the birth of our second son. We managed to have another 3 healthy children post diagnosis. I do remember fainting a few times during the pregnancies, and being more fatigued than even a pregnant person should be. I also had premature contractions and was on bedrest. However now I'm unsure if it was caused by POTS, as I just tested positive (western blot) for lyme. Impossible it's a recent infection, my area has no ticks whatsoever. So, turns out, can't blame everything on POTS anymore. Many people here will tell you they feel better during pregnancy because of added blood volume. My advice would be to drink a lot and get the rest you need. Congrats again! Ariella

hi Here to tell you about single fibre emg's. I was dx with MG because of a suspicious sfemg (only to be undx a couple of months ago by a negative one). SFEMG is highly sensitive for myasthenia gravis, as opposed to a regular emg. There are other conditions that can cause a positive sfemg, but my understanding is that MG causes the strongest jitter on the sfemg. Not a pleasant test. I went straight from the test to the wedding of a close friend's daughter and couldn't eat a thing. I'm currently checking out whether or not I have lyme, and have lookied into emg's in lyme. The general consensus is that they aren't useful for lyme. My neuro, who was looking for ALS or at least a bad case of MG due to worsening of weakness, told me to check for lyme when the test was negative. Lyme can produce positive or negative results. Anyway, it's more likely to have one condition such as lyme or mito causing both ANS dysfunction and muscle issues than to have two unrelated rare conditions. Please be on top of any thymoma possibilty, it can turn dangerous. Very. I hope this post makes sense, not feeling so great right now. Please feel free to PM me for info about MG. There is a great online forum for MG questions, but their computer crashed and is currently offline. Ariella

It's all very confusing. Pharmaceutical companies are big business, and alternative health products are also big business. "Research" funded by either interest can be misleading. I personally wouldn't pay money for something that hasn't been recommended by someone with the same condition I suffer from. If the distributer is claiming it helps with circulation problems, I would ask him for contact info of someone who has been helped in this way, and follow up before spending money. So, you are off to a good start by asking around here. Good luck! Ariella

Although I do have a friend with arthritis who feels that the magnets help her, I am very skeptical of any product which may claim to heal you no matter what's wrong with you. When I was pre-diagnosis, a close friend of my husband's who sells magnets was trying to push them on me (with good intention--he was giving them to me for free) and insinuated that if I don't take them, I am rejecting my possibility to heal. I live in a community with a lot of new-agey kind of friends. So the pressure can be enormous. Once went to a macrobiotic dinner where the speaker was adressing autoimmune diseases. Just eat macrobiotics (and don't take drugs) for lupus, MS etc etc and it will go away. I thought it was pretty irresponsible. Didn't get a chance to tell him so though---after eating a serving of very delicious whole-grained carbohydrate, I promptly blacked out. Must have been a detox reaction, right? Sorry for the sarcasm, I believe there are some alternative treatments that do help, and I'm for whatever works. I'll even take a placebo if it would help. I'm pretty desparate! Just that a lot of these treatments hurt in the pocketbook, my pocketbook is not exactly overflowing these days, and I have unfortunately been the victim of guilt trips for not parting with whatever little money I have to try something that is meant to cure everything... Ariella