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    Old 10-21-2005, 02:24 PM   #181
    Betterdaysforme
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    Re: PICC line people

    Dear TamKs,

    Welcome to the board.

    I was on rocephin for about 9 weeks but had to stop due to liver enzymes elevating. I wish I could have continued because I might be well now. We did have a member named samaya who was on the IV for 6 months and is symptom free. A success story.

    I have never been on Diflucan but am now just starting with a new llmd in Missouri and may be on it someday. Dr. Crist's attitude is that yeast is a huge problem in overcoming lyme. I guess your body can't fight 2 things at once so the lyme wins unless you get hold of the yeast. So far with all I have done I don't really think I am dealing with it but Dr. Crist is ordering Nystatin for me anyway. Taking no chances. I am not sure if the Diflucan helps in the same way.

    We have a lot of members who have had to basically find their own way through this maze because they have encountered the same kinds of doctors you have. Some feel detox must be handled before anything else will work and unclogging your intestines of die-off and bacteria. Some are on antibiotics while others are doing natural cures. We do have a lot who are combining the two also. I am sure you have seen how we support one another and hope you will post with both your ups and downs. I guarantee you will gain a lot of lyme knowledge here. Good luck in your journey and do consider posting when you want to.

    Maureen (BDFM)

     
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    Old 10-21-2005, 05:17 PM   #182
    TamKS
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    Re: PICC line people

    Maureen,
    Thanks for the warm welcome! It seems like a lot of very nice people are here on the board. It is nice to have each others support. I certainly know that my life could be much worse. I have many, many blessings. It is so nice to know that those here know exactly what I am going through. It is impossible for those around me to understand how I feel. It is hard to describe just hurting all over.

    It is great to compare stories and see what works for others. I haven't tried detox, but should probable look into that. I have been seeing a chiropractor for about 9 months and he does acupuncture also. I think it helps, especially with the headaches. I have gone down on my duragesic patch (pain meds.) since i started seeing him. Although my pattern has been that I feel better in the warmer months and worse in the colder months. I guess this winter will be a good test.

    I love hearing the sucess stories! Was she doing anything other than the Rocephin? How long had she been ill? My doc has told me of others who had been sick for many years and are now better. I think it is just going to be a very long journey for all of us, but eventually we will get better.

    It is hard to imagine not being sick and having a normal life. When I have a good day I get so excited because it reminds me of how much I used to get done in a day. Now the laundry just piles up right along with the dishes. I have three daughters and a hubby who make loads and loads of dirty laundry!
    What is sad is that my girls don't really remember a time when I wasn't sick. They were 4, 4, and 2 when I first got sick. I still manage (somehow) to do a lot of stuff with them and I try not to let them know how badly I am hurting, but I would love to be able to do those really active things with them that I just can't do right now.

    Thanks again for the warm welcome!
    TamKC

     
    Old 10-21-2005, 07:49 PM   #183
    Betterdaysforme
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    Re: PICC line people

    Dear TamKS,

    I don't know what else she was doing but if you key in her name at the top of the page you will be able to find some of her posts. I want to say that she occasionally posts but it seems like a long time since we've heard from her. I know we all promise to continue posting so we can help the newbies even when we are healed but I am sure there are times you just want to put it behind you and only visit periodically. Look under samaya and see if you can find anything. I am probably the least computer literate on here so if that doesn't work let us know and somebody will point you in the right direction.

    I know what you mean about the chores. I used to keep such a clean house you could eat off my floors but now you can probably find enough food on them to eat. My mobility is severely impaired but I try to keep up with the cooking and laundry and that's about it. My husband picked up my meds tonight from the pharmacy that the new doctor ordered and it looks like I will be in for quite a ride for the next few weeks. I guess no pain no gain. I won't mind and will get through it if it means recovery. I am sure you feel the same way.

    You said your kids are 4,4,& 2, do you have twins? My husband is a twin and we have tons of twins in both sides of the family. The every other generation doesn't hold true for us. My daughter just had a baby and we kidded her that she might have twins. She didn't think that was funny. Some day you will play with them and they will forget how sick you were. You just have to look forward to that day. Have a great weekend.

    Maureen

     
    Old 10-28-2005, 11:07 AM   #184
    Roman77
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    Re: PICC line people

    Hi all...just checking in on everyone. Not much new with me. No news on the insurance and have scheduled to have my hickman taken out on the 16th of Nov. Hopefully by then we'll have a definitive answer on whether they will decide to cover my iv for another round or if it's a big no. Other than that I seem to be adjusting well to the orals that dr c has me on...zithro and flagyl. I think the 2 rounds of rocephin and primaxin really cut down on the amount of buggers in me since I'm not herxing nearly as bad this round of orals as i did this summer....which is great news. I'm feeling crappy but not nearly as bad as I have before...still pulsing the flagyl (1/4 a tab every other day) but am really thinking i am finally on the up side of this monster. YAY!! Just wanted to share....so how is everyone else?


    brennd8 ~ how is the new port doing? healing? seeing any good signs yet?

    derek~ was so happy to hear that you're finally having some good days...are they still around in bigger numbers? i sure hope so.

    teedee~ haven't heard from you in forever. you must be feeling great these days, at least i hope so!! let us know how you are doing.

    lesley~ how are you and sara doing? is she still feeling better and better? what meds is she on still or has her iv been continued? i sure hope that she's enjoying school and her part in that play. also any word yet on your own lyme tests? hope to hear from you guys soon.

    alright gotta go for now. take care you guys...i'm sure motivated by the fact that we're not all on here every day posting about how awful things are so that must mean things are going better for most of you. at least i can hope.

    shanna
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    "Be joyful in hope, patient in affliction, and faithful in prayer." - Romans 12:12

     
    Old 10-28-2005, 12:36 PM   #185
    TeeDee
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    Re: PICC line people

    Hi All. The last time I posted I said I was feeling very bad about not being on top of the posts and promised to improve. Then I went into a pretty nasty Herx (4-months now) after feeling real good for several days. During that time I overdid and paid for that but now am feeling better.

    I went to see an orthotic specialist who built me a nifty brace-type device that will train my toes to uncurl and help me build up some of the muscle I've lost in my leg because of the goofed-up gait. In just 3 days, I see a marked improvement and walked across a parking lot holding my husband's arm with next to no discomfort! That's an experience I haven't had for at least 4 years (I realize that I'd been walking on the knuckles of my toes on one foot like an orangutan!).

    The infusions are still going well and I'm getting used to infusing Glutathione every 3 days, and love the boost I get from the B12 injections. My husband, parents, sisters and friends think I'm better all around and most days I agree. Sure would like the lightheadedness and lack of balance to improve and we think they will.

    As always, I think about and pray for all of you. I'm trying not to dwell on the fact that the holidays are coming FAST but really, just being where I am compared to last year is cause for thanks.

    All my best,

    Tronni

     
    Old 10-28-2005, 02:23 PM   #186
    Lesley1954
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    Re: PICC line people

    Hi ,
    Shanna, it's so nice to hear that you're adjusting well to the new oral meds and that you're feeling better. I was devastated to read that insurance stopped coverage of your IVs. It is so encouraging that the IVs might have lowered your bacterial load to the point where you can tolerate your new meds. Tronni, how exciting to hear about your walk across the parking lot. I hope it is the first of many!

    Sara is hanging in there. I think we're finishing week 11 of IVs, the last 3 have been on IV-Zith. She started Mepron on Sunday so complained a lot about fatigue, headache, and tinnitis early in the week. But yesterday she seemed to bounce back to her pre-Mepron state. Overall, she seems much better in terms of energy level, dizziness, heart palpitations, but so far the 11 weeks of Lyme treatment has done nothing to improve her visual and auditory disturbances or her neck and back pain. Today I received the Artemisinim I ordered. Not sure when we'll add that.

    We are taking her to New Haven to see Dr. J in Dec. Also, she's going to have a SPECT scan at Columbia. And her local LLMD wants her to see an immunologist in NY because she tested deficient on 3 of 4 immune factors. This is something I don't know much about.

    She's still managing to go to school most every day and for the past several weeks has been staying after school several hours for play practice. The production opens in a week.

    My WB IgM came back from Igenex as indeterminate, but would be a positive based on Dr. B's guidelines. I have an appt in Nov. to see Sara's LLMD. Meanwhile I had a suspicious mammogram so for now I need to focus on that. Another mammogram on the 8th. Hopefully, it will be nothing.

    Take care everyone,
    Lesley

     
    Old 10-28-2005, 03:11 PM   #187
    Betterdaysforme
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    Re: PICC line people

    Dear Romans,

    I addressed this to you but everybody might be interested in something a friend said to me today. I was telling her about the insurance trying to cut your IVs and she had such a perfect comeback I can't believe none of us have thought about it before other than to complain about the insurance companies.

    Her comment was "How can insurance companies practice medicine without a medical degree"? I mean think about it, if you or I prescribed or stopped somebody's meds we could be in so much trouble with the law it isn't even funny. I thought it would be nice if we could threaten them with a comment like that.

    Maureen

    Dear Lesley,

    I am glad Sara seems to be holding her own, now if we can get you better. I will be saying a prayer that your mammogram problem turns out okay and you can get on with healing if you have lyme. I wonder if lyme can affect a mammogram? Let us know how it goes.

    Maureen

     
    Old 10-28-2005, 06:31 PM   #188
    Lesley1954
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    Re: PICC line people

    Thank you, Maureen. I don't know if Lyme can affect mammograms, but I have thought many times over the past year, that I would be lucky to come through the stress of figuring out what was wrong with Sara without developing health problems of my own. As I'm sure all of you would agree, there is not much more stressful than knowing something is wrong, but not knowing what it is. And when it's your child, I think it's even worse. My stress level before she was diagnosed with Lyme was out of control. It's easy for me to believe it could have affected my health. But, I'm not panicing yet. There's a good chance it's nothing. Still, I am grateful for your prayers. Thanks again.
    Lesley

     
    Old 10-29-2005, 11:55 AM   #189
    Betterdaysforme
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    Re: PICC line people

    Dear Tronni,

    I am so excited about your mobility problems getting a boost. You and I can commiserate with each other because just getting around has been so bad. I guess the device they are using will help put everything back in place. I am just the opposite, I can bend the toes on my left foot but can barely bend them under on the right. The is so disconcerting because until I was given all the steroids I had no right sided problems. I am hoping with me it is just another muscle reflex type problem that will resolve itself when the lyme is gone. I swing my right leg so badly that I fear I will continue to do so but on a few occasions when I was on the IV I did walk normal so just hope everything will fall into place. Keep up the good work and I look forward to when you tell me you ran across the parking lot.

    Maureen

     
    Old 10-29-2005, 12:52 PM   #190
    TeeDee
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    Re: PICC line people

    Hi Maureen.

    When I run across a parking lot it's probably going to be at a hospital that has done nothing but deny care for people with Lyme. Kaiser Permanente in Portland, OR springs to mind. I've never been real publicly vocal about politics and all my protests have been through letter writing but when doctors are hurting rather than helping I think they should be exposed and I see that day coming! Guess I'm feeling better today because just thinking about it makes my heart pound.

    And as for your having been put on steroids, that was my first experience before I was diagnosed with MS. I had optic neuritis and the neuro put me on a week of Prednisone, I got my eyesight back and didn't have anything else big happen for ten more years. After I was dx'd I had two more doctors try to put me on steroids but I'd smartened up by then and said "see ya". Who knows how much damage that one week did to me! I had my first
    experience with horrible depression that week which he failed to warn me about.

    I have a physical therapy appt. next week and my therapist is going to be thrilled with the progress. I'm filled with renewed hope that I might actually walk like a homosapien again one day. You hang in there and know we're all finding out more about this thing every day and maybe we'll all be talked about as the pioneers who helped figure things out in spite of the insurance companies and uncaring doctors.

    Lesley and Shanna, I've put in some added prayer time for you along with Maureen and all the others.

    Have a good weekend and keep up the positive thinking!

    Affectionately,
    Tronni

     
    Old 10-31-2005, 05:15 PM   #191
    lymegirl
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    Re: PICC line people

    Tronni

    I am a former PICC line person and occassionaly scan the thread to keep up on all of you. I was glad to see your post about your improved walking. I am happy for you and thanks for posting that as it is encouraging for me and I'm sure Maureen and all of us with problems with mobility. It is my biggest problem and has seemed to get worse instead of better. I am now using a cane after I fell afew weeks ago and broke my wrist.

    Your news gives me hope. Keep up the good progress.

    Kim

     
    Old 10-31-2005, 06:19 PM   #192
    TeeDee
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    Re: PICC line people

    Thank you, Kim! The best advice I can give is to try your very best to STRETCH as often as you can. I have my husband stretch my legs every day and when I'm not careful to keep it up I notice immediately that my mobility suffers. I was real active before the Lyme/MS really set in so had good muscle tone but when unused that goes to pot quickly.

    I hope you're doing well and it was great to hear from you.

    Tronni

     
    Old 11-01-2005, 02:17 PM   #193
    lymegirl
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    Re: PICC line people

    Hi Tronni

    Thanks for that suggestion. I am going to PT for my wrist which I broke 3 weeks ago and just thought today that I am going to ask the PT if I get a RX for legs will they do both at same visit. I was going to the gym 4+ times a week up until July and haven't gone since. It was difficult getting in there due to balance problems, etc but my leg stength has really gone downhill. I am definately going to make that a priority. Thanks for your encouragement.

    Were you dx with MS? I ask because I was dx with MS 6 years ago and just with Lyme 5/05. Tell me more about yourself when you have a chance.

    Kim

     
    Old 11-01-2005, 05:50 PM   #194
    TeeDee
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    Re: PICC line people

    Hi Kim,

    I'm just going to do a quick post because I'm having kind of a rotten day and am going to kick back and hope tomorrow's better and then I'll write more.

    As for my history, I was diagnosed in 1992 with MS and was pretty mobil with few bothersome symptoms until about 5
    years ago when my balance, equilibrium and energy level went to pot. Last Sept. I was diagnosed (by IGenex and Dr. Steven Harris) with chronic Lyme Disease as well as Lyme-induced MS. I have foot drop, the toes on my right foot are curled and I use a wheelchair if going much outside of my house. I think I got Lyme when I was a kid or teen on the NW coast of Oregon and spent a lot of time playing in the woods or camping.

    I'll elaborate (hopefully tomorrow).

    Tronni

    Last edited by TeeDee; 11-01-2005 at 05:51 PM. Reason: misspelling

     
    Old 11-01-2005, 08:03 PM   #195
    brennd8
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    Re: PICC line people

    Hi all,
    I haven't been able to write much since joining this post. My parents went away last week for their 32nd Anniversary and my husband and I "watched" my siblings that are still are home.
    I have been herxing very badly with these IV's abx's. Also, I had a seriously bad yeast infection. I have been on Nystatin since November 2004 and as on Diflucan since Feb 2005. My GP did not like the idea of the yeast pills and wanted to wean me off of them. Even after reading all the info I gave to him. I was having a "Lyme" moment and agreed to go off the Diflucan. This is when I was in between llmd's. Also, i was put in the hospital aroung the same time for asthma and put on steriods for 1 month.
    DOnt mean to gross you out or anything if men are reading this but the yeast infection was vaginal and was bleeding and felt like hundreds of cuts and burning.
    SO...... Dr Crist took me off the abx and put me on a no carb diet until it cleared up. YUCK!!!!!!!!!!!!! I was off for 11 days and started back up yesterday.
    My question is this......Anyone else ever have this happen like that?
    Anyone else have to pulse their IV abx every couple days on couple days off? Is this common?
    I'm so tired on the IV, is this normal?
    Who mentioned the Glutathione ? That is why I had my first port in for last year, just strictly glutathione. But it wasnt' enough to get rid of the lyme but we also did not know it was lyme we were fighting.
    When did you start the glutathione treatments after how long into your abx treatment I mean.
    Anyone else having anxiety terrible from their abx. i fhave been feeling awful.
    i think i have loading you all down wnough with my ? & problems
    goodnight

     
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