DancingLight

Lois, I printed the article and read it...and it was dated way back from June of 2006??? The case against this doctor has been ongoing. The article in Forbes was just recently... Doctorguest, I will agree that Lyme is overdiagnosed...but I think other things are too. And I will agree that there are doctors who are out there just for the money in Lyme, but I think we need to remember this happens in other areas of medicine too. I understand from a traditional medical point of view that Chronic Lyme is not believed in. I have weighed the pros and cons very, very carefully. I also chose my LLMD VERY carefully. You are right in saying that they abx can have anti-inflammatory effects. They are now finding, as I am sure you have read, that the antibiotic, Rocefin is effective in treating ALS patients--not b/c of the antibiotic properties but b/c of other properties of that medication. Still, I don't understand why one pill of minocycline would make me deathly sick with a herxheimer reaction if I didn't have more going on than just some 'inflammation'? I can tolerate such a teeny amount of abx that this seems to indicated something else might be going on. If I were to take the amount of abx needed to treat a sinus infection, I would be hospitalized from the reaction it causes to my ANS. Hence the reason I am still only at 4 doses of minocycline a week. Also, I have heard the perspective that any person with a multi-system illness that does not respond to all other treatments deserves a three month trial of oral abx such as doxycycline or minocycline (Dr. Sam Donta who studies Gulf War Syndrome, Lyme, etc). I fit the category of being refractory to ALL treatments up to this point and I have given them the 'college try' and I have seen the best docs in the country. I am willing to take this risk b/c, honestly, I can't bear the thought of living the rest of my life the way I have the last few years. I would rather take this risk. Right now, I am starting to sleep, having less forceful heartbeats, a bit calmer ANS overall (less shakes, sweats, etc), and less neck pain. It's something. Not a lot, but something. Is it okay to say, at this point, I don't care WHY they are working, I just know they are working?? That is a question for those who disagree with my choice to think about. Sometimes I think the diagnosis we get depends on what doctor we go to first...do we get a CFS diagnosis b/c we went to an ID doctor or do we get FMS b/c we went to a rheumatologist? Or do we get POTS/NMH or some other ANS dysfunction b/c we went to a cardiologist or electrophysiologist. I have consistently stated the risks/benefits of Lyme diagnosei and treatment and encourage people to make a very educated decision based on a LOT of ruling out of other diagnosis, etc. Unfortunately, as you said, we don't have the studies right now. And Lyme is hugely controversial. But, we make a diagnosis of CFS based on clinical diagnosis...and diagnosis of exclusion. It's our best guess sometimes, as with FMS. As with Lyme. I don't know...the testing has a long ways to go, so for now it is like CFS or FMS--a diagnosis based on clinical evaluation and exclusion of other illnesses. I'm just doing the best I can and making the best choices I know how. Sophia, I understand where you are coming from. But, I suppose 'offense' was taken. I don't know...I haven't logged on much b/c I haven't been well enough. So, I'm a bit out of the loop.... I still appreciate these discussions though b/c I think they are important. I think we need to be aware that we could be duped or misdiagnosed...and a healthy discussion is good so that we can each then make the best choice for us. I wish that all doctors did no harm and remembered that rule. Sadly, that rule is broken every day in every field of medicine. Doctorguest, keep 'doing no harm'...it is honored and appreciated. Emily

Lois, Thank you for posting that article. There was also an article in Forbes or Fortune (mental block, sorry) recently about the controversy surrounding Lyme treament and that doctor in particular. It focused on the money making aspect that Lyme doctors can get into. I AM being treated for chronic Lyme disease, but it is a huge leap of faith. I DO believe in Lyme and chronic Lyme disease. I just think it is so important to make sure that you feel safe about the doctors making the decisions and that you have ruled out every possible diagnosis. Lyme can mimick many other diseases. I AM seeing improvements on treatment...but it is very slow. Still it is the first thing that has helped me in a long time. As most of you who've known me on the boards for a long time know--I have been sick for nine years and refractory to all treatments--both conventional and more unconventional ones. I am seeing a doctor that practices out of the basement of his home...and he sells no supplements or high-tech alternative treatments...so I know and feel sure that he is not in this for the money. Some LLMDs I fear are also too quick to diagnose Lyme and not cautious enough. One doctor I called only used on test called the Bowen test, 98% of which come back positive. I did not feel this was thorough enough. I've seen Lyme popping up on the board a lot lately and I just haven't been able to post lately...so I wanted to chip in on this thread and hope folks see it. I just want those who have or think they might have Lyme to be careful. There are good and bad doctors in the field just like in ANY other field of medicine. Lyme gets and extra bad rap for many political reasons that I won't go in to. Chronic Lyme I really believe is REAL. I believe that one day we will say...why did we dismiss those people? Like we used to do with CFS. Or MS before there was a 'test'... Just be careful and be smart about the decision to be or not to be treated for it....that's all. And weigh the pros and cons of treatment carefully. I have chosen to take oral abx (well, honestly, my doctors believe there is NO choice for me b/c I would be too sick from IVs). At this point, I've taken fewer doses of minocycline than a teenager with acne would take for a course of treatment! Still, it's a risk and it's a leap of faith. It's a very personal choice. Sorry, went off on a tangent. I just don't want people getting hurt by bad LLMDs and I don't want people missing Lyme if that's what they really and truly have. It's so very hard and we still need the research to show more--but it's not there b/c there is no funding and the CDC does not really believe in it. I have found with my LLMD that he is so passionate about what he does and cares so deeply for his patients. He sort of ended up in Lyme by accident b/c he is in one of the most highly populated areas for ticks and lyme disease. He went into general practice after medical school and then just started seeing Lyme patient after Lyme patient, until that became his specialty and his passion. He is also very conservative about the meds he uses and very cautious. The medical folks are definitely out watching LLMDs VERY closely and trying to put them out of practice...so it is prudent it they are responsible! Oh my have I rambled. Lyme is controversial, complicated and it's extra fun on top of an already confusing illness such as Dysautonomia! Okay, off of my soap box. We have several Lymies/POTsies on this board who have truly found that Lyme was the cause of their ANS problems....and I think I might be on that track. I hope so! Later alligators!!!! Emily

That's what I get for not being on the board for a few days! I totally missed your post Melissa! And, I guess I slacked off on being a very good Sunfish correspondent! Sorry! Thank you for checking in....we'll talk soon I hope! Love, Em

I take .5 mg of Clonazapam 3x daily for adrenaline surges, myoclonus, forceful heartbeats, sleep, pain, etc. It's helped me a lot. However, I haven't found that it lasts all day as Doctorguest said...hmmmmmmmmmm.....but I DO like that it is not so short acting and addictive as xanax. Emily

Linda, Hershey Medical Center is another teaching hospital in PA along with U. the Penn and U. of Pitt. For you, Univ. of Pitt woudl be the closes I think? But you'd have to see if there were specialists in what you want to see there. I'm not sure Pitt is a teaching hospital? Hmmm....still a good hospital though. Also, there is still the Lyme possibiliyt right? Have you ruled that out for sure? With all of your neuro symptoms? I am sorry you are at your wit's end...I hope something will work out in scheduling another appt. so you can get the help you so need and deserve... Sorry, gotta scoot, so gotta keep this short! Emily

cardiactec, you've gotten quite a bit of feedback, so i just wanted to add one more quick thing... i noticed that you want to have an ablation if it is IST and not POTS and how much you want your life back. i just want to encourage you to see other doctors, get more opinions, or whatever it is you need to do before making such a decision. there are so many people on this board who have had ablations and it absolutely ruined their lives...it was the worst decision they could have ever made. if you do a search for ablation you will hear their stories. i would hate for you to think this would 'fix' you and do it and then be sicker. one other thing i thought about is that ANS disorders CAN be secondary to other conditions. so, for instance while i meet the criteria for POTS and NMH it is not thought that these are all caused by Lyme disease. there are other causes also....so that's another direction to look. many of us feel like we are in a league of our own. my doctors also say they have never had a case like mine. we are each very different. many pots patients on this board can drive, work, etc....and the fact that you are able to do some of these things is great, although i understand that you want 'more' from life. emily

Lois, I do have an 'aunt' who had this and also had to have surgery. She did well with it and is doing well now except she does already have so much of the osteopenia stuff--she's very bent over at 60ish. She also found a top-notch surgeon and I am blanking on the hospital, but my mom will remember...if you want more info. Although aren't you in Florida now? So, you may be looking for someone a bit closer then PA! How's the pool treating you? Emily

Lisa, It was a HUGE blessing. A total 'God moment' as I would say! I feel so much better when I get to hear her voice...I know I'm so cheesy, but I'm used to hearing it almost every day! Emily

Lisa, I just got a general page to come up, but nothing specific to what doctorguest was saying. Hmmmm.... Doctorguest, I haven't yet had a chance to thank you for your services and dedication to DINET. I'm a little behind, as always! Thank you for chiming in with a medical standpoint on topics and for your commitment to helping not only our 'little community,' but people with ANS disorders in general. I wasn't able to read the article you posted either, but I have been very blessed with a wonderful ANS doctor. And he is very sensitive to the issue of depression and anxiety in chronic illness and ANS disorders. I had been hesitant to say anything to him, even though I knew he would NOT dismiss me or minimize me. When I finally said, I'm really having a hard time right now and I don't even want to admit it. He just said, 'Okay, you admitted it. So now let's do something about it!'. We then worked to find meds that helped. He is also very supportive of any counseling or other psychiatric services. I do think it is so important to realize that depression is so often a symptom/consequence of chronic illness and not the cause. I am not well enough to leave the house for counseling anymore, but I did do it for the first 7 years of my illness and I feel that it was an absolute LIFESAVER. I am pursuing options to have someone come to my home, and also work with someone else who counsels me a great deal (spiritual counselor and massage therapist in one! lol). I think just having you state that depression is an issue for many with chronic illness is important, and perhaps will help more of the folks on the board to feel validated as well as feel that they are not inadequate if they do struggle with depression. I've been sick for almost 9 years and am homebound and very ill...Most days I'm very 'up' but I have times when the grief hits hard. It would be, in my opinion, incongruent to feel like crappola and not ever get down about it! I have more of a tendency to anxiety than towards depression, but acknowledging that I do get depressed and I do need medication to stay more level has helped a great deal to have one less thing to feel guilty about or to have to deal with unmanaged (like all of the rest of my symptoms! lol) Okay, that's my two cents. Another jabbermouth here on the boards... Welcome and thank you. Emily

Just a little update on MELISSA ON MORPHINE! She's on mega-doses of morphine. She started telling me stuff and I said, yes, I talked to your mom last night. And she said, 'oh, you did? she didn't tell me you called.' I said, 'well, maybe she did and you just don't remember?' She said, 'that is quite possible'. I love how she can be so funny in the midst of such pain and suffering. Anyways, she's really drugged. Last night despite heavy-duty doses of morphine she was in so much pain she only slept about 1/2 hour. And was like a 15 on the pain scale she said. Now she said she is a 5-6 with the bigtime doses of morphine. She hopes to sleep a bit more tonight than last night! I was so glad that she called. I have been in the midst of a several day long ANS storm and just a couple of hours ago, I totally crashed and had almost fallen asleep (which never happens wihtout my sleep meds). I happened to wake up to pee, and as I was lying back down I saw the phone lighting up and saw that it was Melissa (my ringer was off)...I felt so grateful that I didn't miss her call. And, flop...it WAS Meckel's Diverticulum! How do you know all that stuff? I'm sure you've said, but do you work in the medical field. She said it is usually found in males. I said, 'do you have something you need to tell me?' She was so drugged she had no idea I was teasing her. When she said they had found something else I was able to say 'was it Meckel's Diverticulum?' I felt so smart! hahahaha. She was like how did you know that? It was several inches long...but didn't look as if it had been inflamed or infected. Also, her appendix was enlarged, so probably a good thing that came out along with the other stuff! She hasn't gotten any meds yet...and can't until tomorrow now. Also, it seems like now that she is back in the hospital, the doctors are back on her case...and the surgeon is hopefully going to call a meeting with all the doctors to consult more. I really hope something comes of this. Of course the surgeon said he had never seen a sepsis case like hers--which is the problem to begin with...no one has seen this! Grrrrrr............. So, please send thoughts and prayers that the doctors will put their heads together and try to really solve more of the puzzle. And that Melissa's pain starts to settle down SOON. I am sure she will not remember a word of the conversation she and I just had! But I will and I feel so happy to have heard her voice! Later alligators! Emily

Flop, Maybe???? Her mom talks as fast as she does! It did start with an 'M'...that a rare thing that form that you mentioned? Btw, I've never really formally welcomed you to the board I don't think! I see you've been on a lot in recent months...and I haven't been able to welcome folks as much! So, welcome to our little world! Emily

Just a little update for all the other fishies worrying about our Sunfish! I just called her mom to get a quick update...we just spoke very briefly b/c her mom wanted to go be with Melissa. Soooooooo.....the good news is that she made it through surgery well (so far). She didn't go in for prep until 2:30 this afternoon and didn't get out of recovery until about 7:00. So, her mom was really just getting to see her and get a sense of things. Melissa is in a LOT of pain, which was to be expected. She's on morphine right now. Her mom said that she had a really wonderful nurse...always a Godsend AND they weren't busy (another miracle) so Melissa was the nurse's only patient tonight! This is good...and may mean her mom can go home and get a little rest before coming back for rounds at 7 tomorrow morning. Melissa can start getting her meds 24 hours post-surgery...which was better than they thought--which was 2-3 days without meds through the jtube. They removed her appendix, placed the jtube and also found a piece of some diverticuli something or another which i didn't catch the name of. Not regular diverticuli...somethign that only 2 % of people ever get and only 2 % of those people have problems from it. It wasn't inflamed or anything, they removed it, but don't think that it is contributing to the sepsis. Bummer...that would have been a nice find if it was the answer. But, there are no easy answers anymore. So, that's the latest scoop I have. I know Melissa will be totally out of it for a couple of days. And when she can talk...oh that is always so funny to hear her on morphine. Plus, she never remembers a thing I've told her or she's told me. Reminds me of those 'this is your brain on drugs' commercials with the eggs! Sorry, need a bit of humor after stressing about her getting through the surgery... Later alligators! Emily

Amy, I was definitely thinking you must be due any minute now! So, I was right that my 'timer' was going off! My mom always says to me, "You were five days late and you've been late for everything since then!" So, let's hope you will go into labor ASAP as you are hoping...using whatever things to 'push' it along as you want! Laxatives, sex, spicy foods, lots of walking around, etc. etc. I hope you won't have to induce...just for your sake as I know that can make the labor tougher... Can't wait to hear the news! And I hope that the wellness you feel during pregnancy will continue. Maybe you can keep on some of that weight you've put on! That would help in your case, right? We need a picture of you prego on Faces! Best, Emily

Oddly, I tolerate Celexa better than Lexapro... I too started at 2.5 mg...and worked up. I was very nauseas and miserable, and I need to give my body at least a month on an SSRI to decide, unless it is too unbearable. We each tolerate each anti-depressent so very differently. I've tried almost all of the tricyclics, SSRIs, SNRIs, SSNRIs, and the inbetween class (forget what it is called) that has trazadone and serzone. Celexa, at 10 mg (after starting at 2.5 mg) has been my best choice. I LOVED Effexor for energy, but it also created insomnia... I assume you have already done a topic search for names of variou SSRI's or just anti-depressants or SSRIs in general? It's a common topic b/c so many of us struggle to find what works for us... Hope you find a solution soon, Emily

Roselover and I were both getting ready to post on Melissa's behalf at the same time...THANKS Melanie for writing the update... I started a new topic since the other one is getting so big, and I was afraid that folks might miss that there was an update of sorts, as there haven't been many updates lately. Melanie, I hope that is okay! Here's Melanie's post from the other thread: UPDATE: Hi everyone... just a very quick update for you all. Melissa did not go home today as planned. Instead, she is having a j-tube put in tomorrow (Tues) and so she has been transferred back to the hospital today for this surgery. It is hard to face surgery and the pain following the placement of the tube (pretty big abdominal incision), but this is in many ways, a relief for Melissa who has been very concerned about how often her current tube becomes clogged. The new tube is placed differently and larger so less likely to get clogged. The care center decided that she must have it replaced before going home or she would be unable to get meds. This won't solve the sepsis issues, however, it is something Melissa was hoping for and it has just come about very quickly and smoothly. Though she wants desperately to be home... this really is the easiest way and best time for this procedure to be done. Please pray for her tomorrow during surgery (time unknown) and the couple of days of recovery before she really gets to go home. And we may not hear anything for a couple of days... so no one panic... :-) Just keep our Sunfish in your prayers! ~Melanie Addendum from me... I know there haven't been many updates posted lately on Melissa. Mostly it is because so much is up in the air and she is really going day by day. There are no easy answers, only hard ones. Melanie summed up everything really well... Inserting the new tube requires general anesthesia as well as a fairly decent incision...so she will definitely be uncomfortable for at least the next couple of days. She said the surgeon said it would be painful (I said, "My surgeon never told me it would hurt to get my GB surgery!") Laughing, she said, maybe her surgeon was just more upfront. Oh, and Lois, he asked her if she still had her appendix and she said, 'yes'...and the surgeon said, 'well, while we're in there we might as well remove that too!'. Having it to do over again both of us would have gotten our appendixes removed as you did when you had your GB removed, but now she will have hers out so it is one less organ to get infected by the sepsis. Given Melissa's condition, the surgery certainly won't be a breeze and it is risky, but it's a risk she wants to take b/c, as Melanie said, she cannot keep having to go without meds, particularly the midodrine which is working for her some right now. I know that whenever one of us hears or speaks with Melissa's mom about how Melissa did with the surgery we will post... Just thought I'd start a new thread and Melanie was feeling very brain-fogged while posting so told me to add stuff...so for those who wanted a big more info...hope this helps! Oh, and don't panic???? Melanie?! You are talking to an entire board of worriers here! Please continue to keep Melissa in your prayers and thoughts and also hope that her stay post-surgery is as short as possible because she is sooooooooooooooo ready to be HOME! Also, continued thanks to all of your for the funkiest and most fun gifts and cards you are sending. You are all quite creative. Loved the Bonsai tree with the little pond! Emily

I have been having the same issue also since the forum upgrade....so just thought I'd chime in from another PC user...it seems to be happening to all of us (computer literate or not! lol) Nina you really are a computer geek! lol Hope you take that with humor. Holy cow! I'm truly envious of your computer savviness. Emily

Amy, I really agree with Lois and Doctorguest... I am not doing IV abx and am seeing slow improvements. Doctorguest put into precise words what I was trying to express to you in my last post under your last topic before this one... It may take a lot of tweaking, but there are ways to treat your Lyme without needing a port or a picc...if your Lyme doctor sees it as 'his way or the highway', then perhaps you need to work with a different Lyme doc? Emily

Amy, Did you see my post under your other topic? I just don't have any more words of wisdom....sorry.... I hope your docs can work together, particular your Lyme doc, to find a solution... Emily

Morgan, I'm glad you posted...I wondered sometimes why my urologist didn't do testing just to be sure...but he seems content going by symptoms and med trials. This is how my ANS doc does things also, so I went along with it. I wonder if I should insist on testing? I am glad urethral dilation has been helpful to you. In my case I feel that he did it without paying any attention to my symptoms and did an unnecessary procedure. Also, he certainly failed to significantly numb me as the pain was horrible. And I'll take most procedures pretty well...I was just mad b/c he hadn't listened to a word I had said. Can a urologist tell by looking at your urethra if it is too small??? Before just going ahead and doing that procedure? Do you haveit done on a regular basis to keep the urethra more open? You said the Rimso helped? Did you do more cycles of it or just one? I think I have to go six times total--once every two weeks, but got the impression that sometimes you need to go back every once in a while for some? Not sure... Is the cyto the best place to start? Vs. the urodynamic study? That one sounds harder than the cyto for some reason...yes, you are right the full bladder can wreak havoc for the ANS...it's a big problem for me... Yes, the Rimso is just DSMO...nothing too fancy! And, yes, I actually told the urologist I didn't care if I smelled badly afterwards b/c it wasn't like I had a bed partner to upset! My mom just enjoyed calling me 'stinkpot' for a day or so! Sounds like you hit it better than I did in the urology department...but well, you deserve that considering all the other marvelous (NOT!) docs you've seen out there in covered wagon land. Thanks nursemamamorganwealthofinformation, Em

WE, Hopefully at your first appt. the urologist will not do any procedures and will just thoroughly discuss the problems you are having and then decide what tests may or may not be necessary. I have had mixed experiences with urologists...and I really recommend that if you DO NOT feel comfortable with him/her that you try to find someone else. I find that it is such a private, personal 'area' to be dealing with that I need a doctor that I am very comfortable with. I am currently seeing a urologist in town whom I like very much and he is very gentle. He has mostly based his decisions on symptoms and trial and error of medications. He has not had me do a cytoscopy or urodynamic study as of yet. I just started (last week) treatment for IC using Rimso which is inserted into the bladder via catheter...I really didn't mind it one bit. I stunk like garlic for the next two days and my mom kept telling me how much I stunk, but other than that no problems. I've been cathed many times before so this procedure really doesn't bother me one bit. It is non-systemic and I hope it will help a bit, but if it doesn't I didn't lose a lot but some time and energy going to the appts. every two weeks. But, I'll take my iPod and hang out (you just lie there for thirty minutes with the solution in your bladder). He is still completely puzzled by some of my issues, and the large amoutns of urine I put out in short periods of time. But, he admits that he doesn't know what is going on and how complicated my case is. I really appreciate that humility. I also take medicine for OAD. After you posted about the clitoral stimulation and such, you gave me courage to speak up to this urologist as I was also having that along with urethral pain, so we decided to give treatment for IC a shot. But, it could just be the Lyme rearing it's ugly head. Who knows. There are also medications for IC but I didn't chose that route simply b/c I didn't want to add another one to my already LONG list of meds. I DID see two other urologists in town who were downright MEAN and both left me in tears. They were both dismissive and I won't go into details about the things that they said to me. BUT, I was very clear that I wasn't going to have studies like the urodynamic one done by them. I 'fired them' lol. One of them, who is supposedly incredibly well respected in town, suggested that perhaps my urethra was too small. He performed a procedure called urethral dilation. He really rushed me into the procedure and I wish I had said I would come back in another day or think about whether it was worth it. He said it was easy and simple and blah de blah. I was completely misled. It was excruciatingly painful and I almost passed out on the table lying down from the pain. Then, I had to take an abx afterwards which he did NOT tell me in advance of the procedure that I would have to do, and this didn't mix well with the Lyme tx. So, I guess what I am saying is that most importantly...just be sure that you feel comfortable with the tests or procedures the doc wants to do and feel that there is legitimate reasons behind them. I had heard good things about this doctor and went against my usual gut instinct...just saying yes to what he wanted to do. With the urologist I see now, I feel very comfortable and never, ever scared. I wouldn't be scared...as I think the first appt. will give you a good chance to decide whether you want to pursue further tx or diagnostic procedures with the doctor. You DON'T have to do any procedures tomorrow at the appt. if you are not ready or not comfortable with this urologist. I guess that's my advice. So, no worries, k? You'll be fine and YOU are in control of what is/is not done! Usually they don't have nurses available or time in their schedules to do any procedures without rescheduling you for another date (unless your gyn scheduled tests? do you know????)... Still, if you don't feel comfortable, say adios, and find another doc! There are some docs I'll put up with more crap than others, but not from a urologist b/c the issues are so sensitive...no pun intended. Let us know the scoop!!!!!! I'll be interested to know since we have similar symptoms and complaints.... I'd like to be able to see a urogyn, but the nearest one is two hours away... Later alligator! Emily

Patti! Yeah! I do have crazy memory about stuff like that...I would have done a search for you but I was soooo tired and needed to lie down ASAP... I'm so glad that you were able to find that information! Thank goodness for our archives, eh? I'm also sorry that you have a situation to deal with similar to leah's...you're in my thoughts. Emily

Patti, I don't have memory of someone doing this...although I do remember leah a couple of years ago having a case. Can't remember what she did about it though! Can you search her posts? She's not on much and hasn't been on for a while so, maybe you could find the stuff? Since most lawyers at least give you a free consult...you could start there???? I hope someone will have some insight... Emily

Reglan should only be used for short-term use.... I have posted on this med before as it can have some nasty side effects...and irreversible ones at that. I agree that there may be better, safer, milder choices out there to take for your problems... Emily

Amy, For me, treating the Lyme has been one horrible series of herxes...I had my first 'window' after nearly a year of treatment. My quality of life was so low before treating it that I feel I have to try treating it... As for the PICC line, I had one in before knowing I had Lyme and it caused tremendous discomfort and pain and I could not sleep on that side. I also got excruciating chest pain if I tried lying on that side and near fainting b/c it was pinching. After finally figuring out that I may have Lyme, my ANS doc suggested that perhaps I had so much inflammation and irritation in my veins that I could not tolerate a PICC line. I don't know if this is a possibility for you or not. I also know that some antibiotics are easier on the tummy than others. Also, if you want to stick with IV abx, could you try something like Bicillan which stays in your system for several days--which would mean that you would just get a temporary IV each time and not have a PICC or port? Just throwing some ideas out your way since you feel caught b/w a rock and a hard place. Also, with the fluids, sometimes we can reacha point where they are not longer helpful...I was scared to stop them as I was doing them every other day, but I found that I no longer got a 'boost' from them and we pulled the PICC and stopped the fluids. I actually did better without them. Now, I just do them as needed at the Medical Treatment Unit at our hospital. When I am in 'crisis mode' I get them up to three times a week and just get a new IV inserted each time. I have crummy veins, but honestly the good nurses can get a vein. Or phlebotemist can come and put a heat pack on to raise one... If I have to go on IV abx, I would rather just use up all my veins with individual IVs than get a PICC again! I know the Lyme treatment seems never ending, and it seems like there is never going to be a light at the end of the tunnel. I'm still afraid of that. Very afraid. The treatment is horrible and it wreaks havoc on ANS stuff. I have been trying to find a balance b/w amoutn of abx I am taking and keeping it so that I can do a little activity each day...and not be in the hospital. It takes a great deal of trial and error and tweaking... The best comparison I have heard is that treating Lyme is a bit like chemo b/c you are literally killing off all this stuff and dumping huge amoutns of toxins into the body much like chemo does. (NOT minimizing anyone who has or has had cancer). Well, I must try and get a nap... I hope you can find some solutions and perhaps have your Lyme doc do a bit of tweaking to make you more comfortable and balance treatment so that you are still working towards treating the Lyme without being at your wit's end. Remember too, that it can effect your mood. When I am herxing I am much more depressed and anxious. Hope this helps...just trying to brainstorm a bit... I haven't been on the board much at all either for the same reason as you...Lyme, lyme, lyme... Emily

Hello all! I apologize, as I am the one who started all of the confusion about what address to post for Melissa and whether or not to post her last name. Nina, that is a good idea that folks can always send things to DINET's main address... But, I also know it's just one more thing for Michelle to do! Soooo.......... Here's an address for Melissa that will always be 'up-to-date'.... Melissa Mambort 4623 Penridge Road Toledo, OH 43615-1103 Keep the cards coming and the fun stuff too! Every time I hear from her I get a report on the fun cards and things she has received (Katherine, she got your cute card! And Rachel, she loved the sunfish! ) As for an update, I'll try to post more a bit later today. Melissa is still not at home--she's in the short-term nursing facility, mostly for the purpose of getting her antibiotics. She will be home at the EARLIEST later next week. I think the only highlight of being at this place is the OT--which comes in the form of getting a shower in a reclining wheelchair. So, she is enjoying getting those on a regular basis. Her kitty Czar, came to visit her as the 'Easter Kitty', and she has had some friends come to visit. I haven't posted more updates recently b/c there just isn't a lot to post right now...there are a lot of things to figure out and how to make things managable at home and what in the world to do to keep the sepsis from coming back... Persephone--I know you mean well, but Melissa will never be able to take a long soak in the tub. She is lucky to get a very quick shower (which exhausts her for the whole day) once a month. That is why the showers at this facility with the help of the OT and the special wheelchair are such a treat. Even at home, Melissa is very sick...but still her own bed is better than the ones at the hospitals! Thank you all for your support...I can tell you how much it means to Melissa....A LOT. Love, Emily