Guest guest Posted March 29, 2000 Report Share Posted March 29, 2000 I haven't posted for a few weeks. I've been working and needing to focus on putting some of the pieces of my life back together again. My private practice is nearly dead and I'm scrounging for extra jobs - writing and researching while I try to resuscitate it.The good news is that ever since the allergic reaction to Lamictal I've been 85% normal and not on any abx now for a month. I think the Flagyl really did the trick and the severe anxiety/depression and then allergic reaction were all med side effects. While I'm not in the best of moods because life (even without illness) is a struggle, especially financially, I am not anxious or depressed and my energy is fine except I do tend to crash mid afternoon. I'm trying to be steady and not let the financial pressure get to me. My cognitive functioning is not what I'd like it to be, but with extra effort I can do the work I need to. My vision has definitely been effected. Initially I planned on being on abx for 18 months. But since no one knows for sure whether this is appropriate, I'm going to give my system a rest after 7 months. I'm glad I missed the tension re: Gettysburg and sad, again, that I can't make it. I'm aiming for Washington DC in May. So glad to hear about your progress, Helen. Marta, sorry you're struggling so hard. About the swollen glands - I had them also - big and painful at the nape of my neck and under my arms. Seemed clearly related to herxing. They're gone now. You're all in my heart. Big hugs, beth Re: [ ] Re: Swollen Lymph nodes > From: " Marta McCoy " <mlmccoy@...> > > Hi , > Yes, I asked my doctor that, there is a cyclic time when they come out > every four weeks or so, and die a natural death. Unfortunately only some of > them, wish it were all. The swollen glands and lymph nodes are indications > your immune system is fighting an infection. I also heard just yesterday > that the antibiotics can last in our bodies for weeks. > Hugs, > Marta > > > >From: BBHMM@... > > > >In a message dated 3/29/00 3:22:16 AM Eastern Standard Time, > >lyme-aidonelist writes: > > > ><< Hi Pepi, > > > > Swollen lymph nodes that I have had on the left hand side nape of my > > > > neck just had to resolve themselves, I know what you mean when you say how > > > > painful they are, I have had them the size of eggs. I think it means your > > > > body is fighting the toxin die off. Come to think of it, haven't had this > > > > in awhile now. > > > > Hugs, > > > > Marta > > >> > >Marta, I was thinking that maybe there is more going on than just a toxin > >die-off because I am not on abx and I get them. They come and go and are > very > >painful. Can we have a toxin die-off even if we aren't on abx ? > > > >Your Lyme Friend, > > in VA > >P.S. I never had this until this recent relapse....still wondering what is > >going on ???? > > > > ------------------------------------------------------------------------ > LOW RATE, NO WAIT! > Get a NextCard Visa, in 30 seconds! Get rates > as low as 2.9% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > 1/2122/5/_/484634/_/954345741/ > ------------------------------------------------------------------------ > > Send to -Offtopiconelist messages unrelated to Lyme, please. > Archives can be found at: > /group/lyme-aid. > They are filed by month, pick a month and search those archives for subjects you are interested. > Lyme chat, go to this URL: > /chat/lyme-aid > Should you have trouble opening the page, go back to / and make sure you are registered with a password. You can ask ONELIST to remember you, and will only have to do this one time. > To unsubscribe, send email to -unsubscribeonelist > You may substitute " subscribe " , or " digest " or " normal " for > the word " unsubscribe " ( " normal " is the opposite of " digest " ). Leave blank both the message and subject header. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Hi beth, I am glad you are feeling somewhat better, save for those afternoon crashes. Your letter saddens me as it reminds me of the huge financial losses many of us struggle with when we become victims of this disease. I hope your idea of stopping abx after seven months works for you, the Flagyl meds may have helped get you to this point. I wish my doctor would rx them but he is adamant about it and I really don't understand why. You are in my prayers daily as are others on this list, that you can recover your normal life prior to LD. Keep us posted, hope we connect at DC. Big Hugs, Marta - >From: beth <elsbeth@...> > >I haven't posted for a few weeks. I've been working and needing to focus on >putting some of the pieces of my life back together again. My private >practice is nearly dead and I'm scrounging for extra jobs - writing and >researching while I try to resuscitate it.The good news is that ever since >the allergic reaction to Lamictal I've been 85% normal and not on any abx >now for a month. I think the Flagyl really did the trick and the severe >anxiety/depression and then allergic reaction were all med side effects. >While I'm not in the best of moods because life (even without illness) is a >struggle, especially financially, I am not anxious or depressed and my >energy is fine except I do tend to crash mid afternoon. I'm trying to be >steady and not let the financial pressure get to me. My cognitive >functioning is not what I'd like it to be, but with extra effort I can do >the work I need to. My vision has definitely been effected. > >Initially I planned on being on abx for 18 months. But since no one knows >for sure whether this is appropriate, I'm going to give my system a rest >after 7 months. > >I'm glad I missed the tension re: Gettysburg and sad, again, that I can't >make it. I'm aiming for Washington DC in May. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2000 Report Share Posted March 30, 2000 Hi beth, I am glad you are feeling somewhat better, save for those afternoon crashes. Your letter saddens me as it reminds me of the huge financial losses many of us struggle with when we become victims of this disease. I hope your idea of stopping abx after seven months works for you, the Flagyl meds may have helped get you to this point. I wish my doctor would rx them but he is adamant about it and I really don't understand why. You are in my prayers daily as are others on this list, that you can recover your normal life prior to LD. Keep us posted, hope we connect at DC. Big Hugs, Marta - >From: beth <elsbeth@...> > >I haven't posted for a few weeks. I've been working and needing to focus on >putting some of the pieces of my life back together again. My private >practice is nearly dead and I'm scrounging for extra jobs - writing and >researching while I try to resuscitate it.The good news is that ever since >the allergic reaction to Lamictal I've been 85% normal and not on any abx >now for a month. I think the Flagyl really did the trick and the severe >anxiety/depression and then allergic reaction were all med side effects. >While I'm not in the best of moods because life (even without illness) is a >struggle, especially financially, I am not anxious or depressed and my >energy is fine except I do tend to crash mid afternoon. I'm trying to be >steady and not let the financial pressure get to me. My cognitive >functioning is not what I'd like it to be, but with extra effort I can do >the work I need to. My vision has definitely been effected. > >Initially I planned on being on abx for 18 months. But since no one knows >for sure whether this is appropriate, I'm going to give my system a rest >after 7 months. > >I'm glad I missed the tension re: Gettysburg and sad, again, that I can't >make it. I'm aiming for Washington DC in May. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2003 Report Share Posted April 23, 2003 Joanne My thoughts and prayers are with you. Glo 1. Please no religious, political, race or sexual preference discussions.2. NO slamming of other members, advertising or vulgarity. Thank you!To UNsubscribe send a blank e-mail to -unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 Joanne, I hope you feel better soon. My prayers are with you. We miss you. the WV hillbilly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 thinking of you. love prayers and hugs anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 24, 2003 Report Share Posted April 24, 2003 hi karen, thanks for your email. i feel much happier now, i know that things can change, but i wont let that happen. i am going to visit a friend about an hours drive away who also has aih and we will celebrate together. i will try not to get to drunk lol. hope you are well love and hugs anita > from: Weston <karenw@...> > date: Thu, 24 Apr 2003 05:03:09 > to: > subject: Re: [ ] Update on me > > Anita, > so glad to hear you got such good news! That is really awesome. > > W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2006 Report Share Posted November 16, 2006 Ellen, In my experience, any protocol does not work for a very long time. My 'perfect' protocol works for maximum 3 weeks. Then I need a change. It's been like this since I started my recovery (since my health curve started going more upwards than downwards). The only thing I never changed so far is andrographis. All the other stuff, I keep changing. Last week I re-found my 'perfect protocol' (andro, samento, cats claw, houttuynia, different minerals, some yeast/ funghi killers and two mixes of essential oils rubbed on skin, plus all the supportive stuff I never drop like omega 3, milk thistle, magnesium, etc). I feel again pretty normal but it won't be an everlasting protocol, I'm sure. The more I get better, subtle symptoms emerge (or I realize they exist or have existed, while before they were probably hidden by worst symptoms). And the infections/ inflamations change, new parasites grow, others die, substances I needed are not needed anymore while I start needing other things. It's like chasing many moving beasts. Then I need to attack another part with heavy metal burden, then there's accumulation of metals somewhere else. I got my liver hit a few weeks ago. The curve, I feel, always goes up and up, but it still looks neverending. I'm on my 2nd week 'perfect protocol' now. I'm pretty sure next week will be done!! I'll be looking into my next step then. I now feel arthritic tiny pains in a few joints (the pain is so tiny, but borrelia is there, I'm SURE!!), I still hear my tinnitus sometimes (but much less often than before), I still get some brain fog, but that 'disperses' almost immediately if I rub some essential oils regularly... I still get some lung pressure (but it's slowly disappearing too). But the symptoms are still there. I start to wonder how to attack borrelia in these troublesome spots and I think I'll try rubbing other oils, the ones Farah suggested. Hope you'll find your perfect protocol again soon! Selma > > well, I think I'm going back on Buhner's protocol. I had felt so good > for a while, while on my own protocol, but the last week or so, feel > like I felt for a lot of the past 6 months: tired, headachy, leg > hurts. I don't understand why after some time on (my own) Esberitox > protocol, I felt so good, then nothing changed except I started to > feel not good. > I was even able to chase my kitty, now I am back to - cannot run. :< > well I'll decide soon...I don't want to go on like this. I'll let you > all know. > > ellen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 , for years we tried to find a mattress that would allow me to sleep without pain. I would wake up in so much pain it was hard to move when I first got up. We kept buying firm mattresses thinking that kind of back support was the answer but firmness never solved my problem. It was just by coincidence that my husband and I happened to be able to sleep on a Sleep Comfort bed (you know, the “number bed”). The first morning I awoke, I couldn’t believe how good I felt and how well I’d slept. I hadn’t changed the setting because I didn’t know what to change it to so left it as is. Turns out that it was set lower (softer) than I would have thought I needed. Thought the first pain-free night/morning was a fluke. Nope. Spent five of the most wonderful, nearly painless nights I had spent in a long time. We ended up buying one and have never regretted doing it. After my revision surgery, my husband elevated the bed so that it would be easier for me to get in and out of. Early on in recovery, I found that every time I tried to turn over in bed I was in agony. So painful. So I spent a few nights on the firm mattress in the guest room. It was awful; I hurt all night long. Went back to my sleep number bed because at least I could sleep comfortably when not turning over. Turns out, I just needed to heal more. Eventually, and I guess after more months of fusing, the pain from rolling from side to side went away. Just took time. We love our bed because it can be adjusted depending on what your body needs to feel comfortable. Bottom line, and what I’m really trying to say, is that for years I thought I needed a firmer mattress. I didn’t. In my case it was the firmness that was causing the problem. From: [mailto: ] On Behalf Of rebeccamaas Sent: Friday, June 06, 2008 8:18 PM Subject: [ ] update on me Hi everyone! I've spent the last few months battling UTIs and incompetent people in doctor offices, pharmacies, & insurance companies. But this past Monday I finally had my dose of novantrone - yay! It was only about 6 weeks after it should have been. I had a wonderful steroid high for 2 days (they give a small dose of dexamethasone with the chemo) which has unfortunately worn off now. But I was standing and walking better than I had done in months while it was there! I was really tired from everything - the UTIs and the chemo - but am doing better now. The chemo treatment was an interesting experience. Instead of home health, I ended up having to go in to my neuro's hospital 90 miles away. I won't go into the details of all the problems, but the whole ordeal took 10 hours, which was absolutely ridiculous since it should have been closer to 5-6 hours (including travel time). The nurse was horrid and among other things, at the very end of the treatment I had some blue drips running down my arm - not a good thing to have chemo leaking out of the IV and touching your skin! But it's all over for 3 more months anyways. I did see my new PCP this week too (my old one moved away), and I was very happy with her. She is very easy to talk to, and she is more than happy to coordinate care with my various specialists. Now next week I get to see my new urologist, due to the subpar care I got from the previous doc's office with my various bladder infections. So hopefully that will go smoothly too! I am at almost 11 months post-revision. My back is doing well for the most part. The pre-surgical pain is gone. But my biggest problem with pain now still is sleeping comfortably. I don't think it's my mattress (fairly firm), but more with the positioning. It doesn't matter where I cram or don't cram pillows, I just always wake up really sore. And oftentimes at the end of the day I feel really tight from sitting all day in my wheelchair. I've been trying to change positions more often, and it only slightly helps. But other than that stuff, things are going well here. My husband is putting up a swingset for the kids (now ages 3 and 4), and they are so excited It's fun to watch them! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 HI , Good to hear from you. Sounds like you've been through the proverbial ringer, but it seems you are doing better now, and I'm glad. I'm with Kay on the mattress. If your mattress really is firm, it may well be the cause for your pain at night. Years ago, the powers that be had us buying firm mattresses but now they know firm mattresses don't give the proper support. One way to test your mattress is to see if every part of your body is being supported by the mattress. When you lie on your back, does every part of your back and legs touch the mattress, including your waist and the back of your knees? If there is any air between any part of you and the mattress, then the mattress is too firm and not supporting you properly. In the same vain, if you can slide your hand easily between you and the mattress, then the mattress is most likely too firm. Some people find the sleep number bed the best; some think memory foam mattresses are terrific. I've never tried the sleep number mattress. Some find the Tempurpedic memory foam mattress the best. I hated it. It was much too warm for me and I found it almost impossible to turn over and it was just plain uncomfortable. I wound up, about three years ago, with the second softest Seally Posturpedic mattress. I just love it. It made a huge difference for me. I hope your chemo gives you the results you need. Bonnie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 , Well what a delight to see you are feeling well enough to give us an update! Your presence was missed and after a few weeks I really began to worry that you had encountered another difficult health problem. I am relieved to hear that you finally have gotten your chemo and hopefully will rebound quickly from this most recent trial. Its a bummer that you cant take more of whatever med (or something similar)that was giving you such a boost of energy/stamina. Even for a short while I wonder if getting stronger from using your body more wouldn't give you better abilites and comfort in the longer run? I know that steroids are a difficult drug to be on for the long term, however I do know that some diseases require that the patient take a longer course than the usual 10 day deal. But hey, I don't really know anything...just wondering! I think Bonnie gave an excellent guide to how to best determine if your mattress is right for your body. Now that my spine and pelvis are permanantly attached whenever I travel and am on a firm mattress I PAY big time. This permanant union, on a firm mattress, forces your hip into the mattress if you are a side sleeper, and sleeping on my back the mattress pushes up against an unyielding tailbone. In either position I feel somewhat unsupported in that L3/L4 area....which was mighty uncomfortable in the year following fusion....to the point where I was very reluctant to travel and endure unknown beds. (Today I can tough it out much better...but I always know I will be sore the morning after a bad/firm mattress. There is nothing like a mattress discussion to liven things up....and I know that we all have our favorites (I actually love my Tempur and can't wait to get home to it!) but I do have one suggestion. Over here in Denmark there was no way I would/could afford the Tempur with the US dollar in the toilet and high V.A.T (25% goods tax)so I had to compromise. The mattress in our rental was mighty firm. I went to the bedding shop and bought the best quality memory foam topper I could find. The one I bought was about 2 " deep. Amazingly it has been pretty darned good. It's not quite as supportive as my full Tempur mattess, but it does keep my hips form aching in the morning. Its true they are not cheap either, but perhaps you could justify one as a medical appliance with a doctors script? Anyway, it would be a lower cost way of finding out if the mattress is the problem, and maybe tide you over until you can make a bigger financial commitment to any one bed. (And no matter what you do if you take the plunge and get a new mattess be sure there is a period of time whereyou can send it back if its not to your liking.) Okay...thats my $.02! Glad you are feeling better. Take Care, Cam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 , Bonnie hit the mark with the methods to determine how to tell if your mattress is supporting you. It wasn’t until after I spent time sleeping painlessly that I began to examine why. Cam’s suggestion about the memory foam topper reminded me of a solution we found as we were preparing to go camping one summer. We would be sleeping in the back of a van and knew the hard floor would be a killer. My husband went to a place in town that sells all types of foam for bedding, etc. He found a four-inch thick version that he believed would be a better option than padding the hard floor in the van with blankets. Only thing was the price. It was more than we wanted to pay for a one-time deal. He discussed our situation with one of the store guys who, after scratching his head a bit and pondering the problem found a solution for us. Turns out there was an end piece that had pretty much gone unsold because it was a weird size. They had removed it but it was still in the back. It was the perfect size for our needs, would fit the configuration we needed, and we got it at a discount price. What could have been a miserable four days of not getting sleep turned out much differently. We kept the piece and have since found several occasions where it has come in useful. It could be that such a topping on your already firm mattress, though you wouldn’t likely need one four inches thick, could go a long way in helping alleviate some of your pain. And it would be cheaper than having to buy a whole new bed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2008 Report Share Posted December 17, 2008 Well I had been on LDN for 11 months when I ran out of money to buy my next 3 months supply. The few Capsules I had left I put in water and eeked out at a lower dose for as long as I could, then went without LDN for 2 weeks. Happy to say I now have my 3 months supply. How did I go without my LDN? BLOODY AWFUL!!!!!!!!!!!!!!!!! Fatigue slammed in big time, I got tremors in my right hand, bladder issues, bowel issues, felt depressed, spasms and generally felt lousy. I'm still not back to normal (as normal as 1 can get with MS) but today is Wednesday and I only got my parcel Monday. I have felt less fatigue today, yesterday was still major fatigue. Greens Pharmacy (Adelaide, Australia) was very prompt in sending me my LDN via express post once I paid for it to which I am very grateful. I honestly did not expect to go downhill like I did, did expect some but not that much so yes LDN WORKS. Sal Quote Link to comment Share on other sites More sharing options...
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