DancingLight

So, I've seen briarrose post a couple of times...and esp. under the documentary section. So you're still out there! Check in if you can! But, still no news on Ernie or Gena or MaryfromOH or others... And, dizzygirl and dizzydame have been very quiet this week... And Sophia? What, are we ALL dropping like flies now????? Corina???? Morgan? Where oh where are all of our jabbermouths. Sorry, just teasing, but me, and sunfish, and morgan and dizzy and on and on...well we are chatty cathys! there's just no denying it! I never did learn brevity from Ernie, did I???? Check in if you are able ladies! You are missed! Love, Em

Rachel, I was watching for your update and then was down for the count for a few days! Sorry! I am soooo sorry the 'squeaky wheel didn't get the grease'. I can't say it always does, but sometimes it does. Grrrrrrrrrrr.... I am grateful you have a good PCP...and maybe this person will advocate for you and call and schedule with this doctor you want to see. I also appreciate that you are using precious energy to stand up for yourself and also to let the doctor and office know what happened b/c it is unacceptable. It's so hard to keep fighting that stuff. I am doing this with Ambien and have been for over a year now. Sometimes I just want to give up but I also don't like things that are 'unjust' to just be let go! As Sophia would say, tie another knot and hang in there! Love, Emily

The simple answer, as Nina said, is YES...you can be hypermobile without having EDS! A good geneticist would be able to make this determination. There is no skin biopsy for Hypermobile type EDS. It is a clinical diagnosis. I'm a person who has a few signs of it, but certainly not enough to say I have EDS or that it is the cause of my problems. If you want the down and dirty on EDS, it is a very frequent topic of conversation here on the boards...I would recommend doing a TOPIC search and seeing what might help you...we've discussed diagnosis, how we got there, etc. etc.... Emily

I am not a 'medical expert' by any means, but my understanding of the CFS and Dysautonomia are different than as stated above... I have not read Dr. Bell's website yet. I did read the points of the article posted, which are confusing b/c one point states that CFS may be discovered to be several different illnesses (this is what I believe will happen in the future. I think it is very real, but too often used as a waste-basket diagnosis that misses underlying causes). In another point he states that the Final Common Pathway to CFS is Dysautonomia. Not sure what the article is really trying to say. What I DO know is that Dr. Peter Rowe at Johns Hopkins, as Julie mentioned above, does connect the two. However, (Julie I hate to contradict you! )...in hi study Dr. Rowe took patients with CFS and gave them the tilt test. He found that a certain percentage had ANS dysfunction while others did not. This was the beginning for him of separating out two types of CFS patients--those with Dysautonomia (positive tilt test) and those without (negative tilt test). He emphasizes the importance of treating patients who have CFS AND ANS Dysfunction with meds for the ANS problems b/c this can often lead to improvements. He was the first doctor to differentiate b/w these two groups of patients. I wish I could remember the year of the study and/or the percentage of patients that had just CFS vs. those that had BOTH CFS and NMH or POTS. The diagram that you describe Julie...I think that it is actually showing that CFS can be one potential CONTRIBUTOR of OI for some folks just as depression, anxiety, EDS, allergies, cervical stenosis/chiari, infection (i.e. lyme), etc. OI is in the center with the other items listed as possitble causes/contributers. I may be totally off my mark b/c I am not as good at staying up on research as I once was. However, I still receive the CFIDS chronicle, etc. And from the latest issue, in which Dr. Rowe was interviewed, and also they listed even Lyme and other infections as possible causes of some cases of CFS, I still beleive that they are TWO SEPARATE illnesses. If they were not, we would not have DINET and NDRF and the CFIDS Association looking at such different things. The CFIDS Association of America, which just went through a huge deal to change the name to CFS/ME, has some funding with NIH, AND just launched a HUGE ad campaign certainly sees CFS as separate. They do, however, OFTEN address that many people have OI issues that need to be treated. Sorry this got sooooo long! I just was afraid that we might be sending out some misinformation. However, please correct me if I am totally wrong on this one! Tonight at dinner I was like, okay mom, do you remember that study by Dr. Rowe? This is what he found, right? Because I didn't want to mess up! I hope this helps! We have so much to learn about BOTH illnesses and many of us HAVE both! And then some of us like to get things really mixed up and get something like Lyme as an infectious cause of both. UGH! No wonder we need a documentary! Later alligators! Emily

Hello all! I am glad that I logged on for a second. I haven't talked to Melissa today at all and just briefly over 'chat' the past couple of days to check on her. She's having HORRIBLE, excruciating stomach pain that she is not sure of the root cause of. I hope that she will not mind me posting this update. She's really not feeling well at all...she had been a bit more stable, but these past few days have been really, really bad. Also, it just takes her so much energy to do all of her meds and ivs and such that she doesn't have time for much else. All of the new adjustments and dealing with new realities are a lot right now... THANK YOU FOR CHECKING ON HER....YOUR TIMING COULD NOT HAVE BEEN MORE PERFECT AS SHE COULD REALLY USE SOME EXTRA HEALING THOUGHTS AND PRAYERS FOR COMFORT AND PEACE. She has been able to read on the forum and post a bit before this latest saga...so you are right that she has been posting a bit more. Emily

Tessa, I don't know if this helps you since you are not in the states, but my ANS specialist strongly believes that milk is a big culprit for many POTS/NMH patients and he always refers me to the following pharmacy, which he says does a good job with compounding meds without too high fo a cost. Abrams Royal Pharmacy 8220 Abrams Rd Dallas, TX 75231 Tel: 214-349-8000 Fax: 214-341-7966 He requests the meds to be 'compounded without milk protein, lactose, or other food protein additives'. (I just had this email exchange with him a few days ago). Unfortunately, many, many meds have some form of lactose in them. It's very common and very difficult to find meds without lactose. Also, if a medication is still under patent, it cannot be compounded. Hope this helps, Emily

UnicornIsis! Yes, I DO remember you! It sounds like you are having a tough time... We had a wonderful discussion about service dogs with TONS of links. It's a long thread, but worth it and hope it helps. Plus, I did a search for service dogs and only four posts came up, so you should be able to get through those also, but this one is the 'meatiest' of them. Sunfish supplied us with a ZILLION links about service dogs....hope this helps... http://dinet.ipbhost.com/index.php?showtop...0dogs&st=30 Later alligator! Emily

Persephone, Congratulations on achieving your dreams and perservering despite your limitations. I don't want to minimize your accomplishments in any way b/c for anyone, sick or not, they are a BIG deal. Getting a masters or a doctorate is a huge accomplishment and I am very proud of my friends who have pursued them. However, I think it's perhaps unfair or unrealistic to say as a general statement that any of us can do what you have done if we just perservere. This is the second time you have posted a topic with the same title. And, I have to admit it stung. Some of us are so sick that willpower alone could never get us through school...or many other things. Willpower for me means getting dressed, getting through the day as best I can and staying as positive and hopeful as I possibly can. However, I must balance my tendency to be cheerful and optimistic with my reality. I'm not trying to rain on your parade. But please remember that each only walk in our own shoes and we only know our own reality of limitations from POTS or another form of Dysautonomia. We celebrate your successes and are proud of you. Please, however, remember that no matter what, some of us want to be out in the world right now and simply can't be. Emily

Linda, Melissa's post is really interesting b/c it seems most folks with ANS stuff tolerate abx if they need them (besides the general icky side effects). I remember thinking when Melissa was getting such high doses of abx that I was so grateful she could tolerate them to treat what was going on with her. I felt, for me, that getting sick on such teeny tiny doses of abx (less than anyone would take for even a sinus infection) was a real sign that something else was going on. I used to take abx a lot before I got sick without such ill effects (other than GI junk and feeling yucky from the infection I had). Anyways, I don't want to turn this in to a Lyme thread b/c I am soooo not an expert in Lyme. I'm still taking such a leap of faith in that direction. But, I did want to comment on your post about your PCP and the Lyme test. FYI...non LLMD's will take that test as an 'answer', but it's not too helpful if you have chronic Lyme. It would be a surpirse to me if it did come back positive. Even EIGHT years ago, mine did not come back positive and I never knew to pursue it further. No one EVER mentioned Lyme to me as a possibility until my new ANS doc did in 2005 after my surgery-gone-wrong. So, the test you get done not at specialized labs is pretty useless. The testing for Lyme even at the good labs is hard and still needs lots of perfecting. Hopefully your new PCP would be willing to refer you without a positive test result....b/c it's not relevant. I didn't find any Lyme docs who even took my insurance, so I didn't have to worry about referrals. It was my decision.... Best, emilyturtlegirl

Hi Pamyla! Thank you so much for helping me out. Our feelings are very similar. I will try to PM you soon so that we can talk about Lyme and not get too off-topic on the board. But, you know that double-edged sword. I feel like if I want to kick this in the butt (the Lyme) I am going to be even WORSE about being able to keep up with email! And folks here know, I'm the queen of slowness in that department! Anyways, I would like to tell you more about the massage and tolerating it (it's actually been really interesting sicne I started Lyme treatment vs. when I was not). But, first, I wanted to ask you why it was so surprising to you that I tolerated massage so that I could better tailor my answer! Thanks! Later alligator! Emily

My ANS doc doesn't like his patients to get the flu shot, and prefers that if we do get the flu we use one of the new meds out there to tackle it.... Not sure which one he uses, but that's his method of choice...so maybe you will tolerate it okay!? I hope so! Emily

I just wanted to send out my love to Pooh.... and see if anyone knows how she is doing at home.... and let her know that she is still in my thoughts... Singing your song for you Pooh.... Emily

Linda, I remember for some reason this topic coming up before and I did a quick search (use the advanced search option, type in 'antibiotics' and then choose 'search topic titles only') and you will get about 10 topics related to what you are asking....Hopefully they will help you. I was curious what others had to say on this matter, b/c it's so hard to sort out what's what. And, I don't want to be all 'lyme, lyme' but that's my filter right now. It looks like others have problems with abx and POTS without having Lyme. But, I did want to ask you if you were ever able to pursue the possiblity of Lyme and what you found out. When I first decided to pursue it, my ANS doctor asked me three questions (only two of which I can remember at this moment, sorry!). 1. Do you feel worse when you take abx? 2. Do you have memory of a tick bite? Or a bull's eye rash? You have some symptoms like your bone pain and such that others with the ANS issues don't seem to have. And you live in a Lyme area right? So, I don't know. It's impossible to know and I don't want to suggest anythign unreasonable at all....just throwing some things out there. Hopefully, it's just a temporary deal with the POTS and the abx not cooperating with each other. Not to mention that ANY time we are compromised with a virus or an infection and our body is fighting that...we are going to have a flair in ANS symptoms...so it could be that and not the abx? Just some thoughts... And, no, you may NOT be the green girl! hahahahahahahhahahaha. Later alligator! emilythegirlformerlyknownasgreen (however, now i think i will be turtle girl, so if you want to be green, i guess you can! sorry just a little teasing!)

It took over a year for my B12 levels to improve...and I'm still not sure what accounted for the sudden change. They stayed the same and then, poof, went up to a nice level. Too bad I didn't notice any change in how I felt! Oh well! Emily

Karyn, That is so interesting that you take Aless continuously and have had no problems with breakthrough bleeding. I have to admit I am envious! I, too, take Alesse, but they switched it to the generic, Aviane (wonder if that is making a difference)? Hmmm.... I had my first period in three years in December to supposedly lessen the breakthrough bleeding. However, it's as bad or worse than it was before. I am keeping track now on a calendar and spottend I think 16 out of 28 days this month and as many or more in January. Often it is a LOT of breakthrough, esp. when I pee or poop. I know you are a doctor so it was interesting to hear your perspective. I know that the whole issue of suppressing continuously is controversial, but I am not sure that I really understand why or how having 4 periods a year makes it any safer or 'better'.... You mentioned a small increased stroke/blood clot risk (did you mean b/c you are over 40 or b/c you take it continuously).... When I do the math, it seems like such a small amount of hormones extra over a year or even several years to make much of a difference (b/w 4 periods a year and suppressing continuously)...ya know? I just wish I didn't have so much breakthrough bleeding and spotting, esp. b/c I am having so much trouble with vaginal/urethral/bladder irritation. Different doctors have given me different opinions on suppressing continuously. But, the do 'get' that periods make me so sick it's pretty much unrealistic to attmept them....which I learned for sure in December. Emily

Oh morgan, I don't have words....I am so sorry...so sorry.... sweetieemwhoisspeechless (that's a new one! me, speechless!) Sorry, inappropriate humor.

P.S. I just thought about this--with the issue of babesia. We never got a positive test for babesia, but my doctor suspected it b/c of the severity of how I felt. He called it an 'indescribable feeling'...and I thought, 'YES!' it wasn't just that I couldn't articualte it all these years. Maybe though, I really do have Babesia and that is why even more than a teeny bit of malarone is so intolerable and perhaps why I am feeling sooooo much worse since starting the Plaquenil. Food for thought.... Emily

Pat, I look 'beautiful' on paper too! That's what often is so tricky for us....blood work coming back normal, ekgs normal, etc....I just had this discussion with my PCP at the last appt. b/c we finally did a 'physical' after all these years b/c we're always so busy averting a health crisis we never got to a 'physical'. So we joked about how on a surface level like that I look all 'perfect', but I'm soooooo sick. B12 is a very reasonable test to request and low B12 is not uncommon! Emily

I take 500 mcg of B12 daily. Have you had your levels checked? That would be a good starting place. Mine were 'low normal' and my ANS doc recommended I take oral B12. I highly recommend that if you haven't already, you do a search for B12 as a topic. It's been discussed a LOT, and both in terms of shots and oral form. Hope this helps, Emily

Pamyla, THANK YOU so much for replying. This journey has be so befuddled. To answer your question about going off of meds, yes, I have to be very slow and deliberate also, just as I am with going on them. It takes me months to get off of something. I think I am sort of in that 2-3 month ballpark with the plaquenil. I wonder, though if I will get past 200 mg a day. I decided to go two days on, one day off of 1/2 pill for a week and then go to 1/2 pill every day for a couple of weeks and then go from there. I also added in one more mino a week. Pathetically slow! 4 50mg tablets a week! My massage therapist can tell a difference in my response and I can feel a difference in pain when I am getting a massage, but otherwise the change isn't tangible yet. I AM seeming to have that extreme exhaustion you spoke of. The biggest challenge for me (and it seems you also? you seem to have a fairly low baseline as well as low tolerance for the med increases?) is that I already feel HORRIBLE all of the time. So, increasing meds just means feeling unbearable. It's hard to strike a balance, b/c without the treatment I will just stay feeling horrible, but the treatment is so grueling it's hard to keep at it and not want a break from feeling so awful. The past 2 months I haven't had a 'window' of seeing any changes manifest. I feel like I am just so busy herxing and dumping toxins. And I am wondering how much the Plaquenil is contributing to this (although I already felt so badly at the time that I started it). It's very hard to sort out what is a herx and what is just how sick I am from the Lyme. Am I making one bit of sense? It takes so much blind faith to just keep making myself feel worse in hopes that someday I will feel better than this. And what is better??????? I'm struggling....sorry to dump on you all! Right now, I am just trying to strike the difficult balance b/w taking enough meds to make progress but keep the ANS symptoms in check. At this point, they are bad and I feel like a wet dishrag, BUT I also feel stable enough to keep going. I know what it's like to go too fast and end up in the ER and having to stop the abx, so I'm just hoping that if I can mentally/emotionally/spiritually get through this level of physical pain, I'll be able to make progress. Does any of this ring true for you too?????? Just wondering? I knew the process would be hard...and I think I knew it would be this hard or harder. But knowing that still doesn't help me when I feel so yucky!!!! Okay, Morgan needs to call whine-1-1 on me. That was a major vent. Just know that we are travelling this journey together....that's what gets me through!!!!! Knowing I'm not alone.... Take care as best you can, Emily, The Turtle Girl

Hey morgan, How did the test go? Did they do it RIGHT? love, sweetieem

Rachel, I'll be interested to see how you do with the new Juzos--the sheer ones. I am pretty sure the style tearose was referring to is the one I have, but I get them mixed up b/c there is a 4601 too I think? I have really found that the fabrics for the different brands are VERY different and make a lot of difference in ease of putting them on, comfort, and texture. For instance the Juzo are by far the softest, silkiest ones I have ever tried (in the sheer)...I don't care for some of their other styles as much. They also have two-way stretch fabric, which makes a huge difference. Gee, the things we become experts in eh? Good grief! Emily

Baby powder is a good choice to help with hose... Also, for those of you having trouble getting it over the heel? Are you following the directions that come with them illustrating how to put them on? Just curious, b/c when I do it that way, it is a breeze. Any other way and it is impossible. It's hard to describe. But, I start with the hose right side out. Put my hand through them, and pull them up on my arm all the way to the foot. Then, pull the off of my arm by turning them INSIDE OUT. STOP pulling the hose this way when what you have left on your hand is the foot and heel of the hose (still right side out) and the rest of the hose wrong side out. Then, gently pull it off of your hand keeping the foot part right side out. Pull the hose over your foot and heel. Then, finish putting the rest of the hose on, turning them right side out while you pull them over your foot. Hope this helps! Later alligators! Emily

MNSue, There are a handful of people on this site who have tried or are currently trying IVIG. Were you able to do a search and see if that helped you find an answer to your question? Just do an advanced search with IVIG as the TOPIC search (don't search all posts for the word or you'll be bogged down! ) It's been discussed several times before and maybe you will find some help that way.... Melissa knows a lot about IVIG and some others, but many arent' up to posting much.... So hope you find some help in a search... Emily

Morgan, Hey, don't I get called sweetie? Later misscrankymorgan, Emily