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  • My appt today with Doctor Raxlen

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    Old 08-14-2007, 08:49 PM   #46
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Hi Jennifer. I'm glad you are going to see Doctor R.
    Mickie, I think about you A LOT. Thanks for your thoughts and kind words.

     
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    Old 08-15-2007, 09:16 AM   #47
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    Re: My appt today with Doctor Raxlen

    Dear Rodney,

    I finally came back on the website a few days ago because I wanted to ask your advice on siberian ginseng and I know you had great luck with it at one time. By the time I had read some of your posts I was sitting here in tears, both good and bad.

    I was so upset because as you know I have been following the protocol in the Buhner book just like you and I was always telling Ronnie how well you were doing and the I have hope. Then I read about your trip to Dr. Raxlen and it blew my mind. This is when I shed the bad tears. I went back as best as I could to find out why you changed directions but we all know that I am computer e-literate and after a while gave up the search. I know it might be repetitive for some people but please tell me why you switched.

    The good tears were for the fact that you finally are seeing somebody who knows how to cure you. Of course Ronnie was all set to hop in the car and head for New York. He actually has a class reunion in Pennsylvania in October but with all the mobility problems I have I really haven't made up my mind if I'm going yet. Also how the heck would I get around New York City??
    Another thing to consider is follow-ups. It's way too far from Dallas.

    I'm sure you remember that I was on a picc-line for 10 weeks when my liver enzymes went from 40 - 740 and the doctor pulled the picc-line because he freaked out. At the time I didn't realize what the numbers meant. Now that I do it freaks me out too. Then when I went to Dr. Crist in Missouri he had me on rifampin, cipro, biaxin, flagyl, ceftin and too many other things to mention. I was really hoping the Buhner theory would work but maybe I'm being naive. The only thing I can say is that in the last year since the pneumonia I seem to be holding my own except for the leg twitching and arthritis increase. I'm not sure if this means the andrographis is stirring things up or what. Against my inner wishes I did go on requip this past week and it seems to be helping. Maybe if I can get more sleep it will improve things. The twitching had been keeping me up all night.

    I don't know if I will continue this route if you feel it's a bust so please let me know. What brand of andrographis did you use? My natural doctor uses progena and only doctors can get it and it is pretty expensive but unlike all the other kinds that say don't use for extended periods the progena says it is good for liver support. Of course what Buhner says to take is more than the bottle says but I'm not surprised at that. I guess I need for you to tell me about the eleuthero (siberian ginseng) too because the fatigue and energy are about to drive me crazy. Also if you thought it helped what brand of that too. If I used herb pharm like Mr. Buhner said it would cost about $10/day for a few months. Wow! It would be so great if when we were all over this we could give the CDC all of our bills since they are telling everybody 4-6 weeks of Doxy is the cure. I await your reply anxiously and wish you nothing but the best. You have always been a special friend.

    Love,
    Maureen

    PS Mickie, I hope the picc-line helps you. I really need to get on here at least once a week so I can keep up with my old friends. Make sure you take lots of milk thistle to keep the .liver enzymes down. You have always amazed me that you do all that you do. Who cares about caps!! I sit here and hunt and peck since my right hand tends to curl up since the pneumonia last year. This started when I was taking all the flagyl and the infectious disease doctor in the hospital blamed it on that. Don't you just love it when the "cure" makes you worse than the illness? Why are we not all in a padded cell together!


    PS Jennifer, Welcome to the site. I just wanted to let you know when I first started this over 6 years ago my first symptom was a sinus infection too. Hang in there and don't let them tell you it's MS like they did me. All the steroids they gave me has made this an unending nightmare since steroids are a no-no for lyme. You are in the right place for info and compassion.

     
    Old 08-15-2007, 11:17 AM   #48
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Maureen, I just happened to run a search on your name to find out if you posted recently and came up with nothing...isn't that crazy?

    Between the daily detox baths and Buhners protocol with the Andrographis I made tremendous progress, however...the progress was so slow it had to be measured every two months...I probably had a 1 to 2 percent improvement per two month period.

    I definitely did not want to dishearten you about the Buhner protocol because it propelled me to a completely new place...but
    after the divorce I had a brand new lifestyle which was more then twice as demanding...and I had to face that it was not possible for me to continue on at work, treat myself, and take care of my kids...I did not have another two years to wait...I was so low at one point, I was even considering cutting checks to some family members to make sure my former wife did not end up with it just before departing the "physicial" world. The divorce and the years of illness finally dropped me to my knees. But, my children...I tried to rationalize they could make it without me and then when I would see them, they were so happy to be with me, their eyes lit up. And I was angry because I knew I could not wait another two or three years on that protocol...I felt like I was at a dead end. I went to a doc who put me on a legal amphetamine to help with my energy and mood. I told him I thought it would mask my illness and send me into an energy nose dive. He asked me to try it. For the first day I felt great, and then just as I had suspected, I was in bed for three days following and had to call out of work. Then I realized, that was the last straw. I decided to take a leave from work so I could finally drill down and put as much effort as I possibly could into testing and treating the disease with the help of someone else besides myself.

    I went to my PCP for a ELISA, which was positive and sent for a Western blot and for the first time, my results came back positive for IGM bands reflecting an active infection.

    I believe it was the Andrographis and specifically the Samento that triggered my immune system to respond to the disease.

    I went to doctor R, it's very easy, you just give a cab driver the address and you are there. Its an 11.00 cab ride from Grand Central but not sure how far it is from JFK or where you will be flying into.


    My biggest mistake was that I made a lot of assumptions. I assumed I had Lyme and only Lyme...but I had the two other co-infections which is why I could not progress any further on Buhners protocol.
    There is expense, risk of losing employment, lots of out of pocket expenses, but for people like us, when you are so sick you don’t want to live, I think you have to make the decision to find a way to just get in to see a specialist who really knows what to test for.
    I feel there is a high probability that most of us are co infected and everyone should have blood sent to Igenix for ALL the co-infections..and that is why we, the chronic Lyme people, keep getting stuck in a rut and coming back here year after year, because the other coinfections survive the Lyme antibiotics while the co infections were either missed or tested by an unreliable lab and not treated seperately.

    I used "Planetary formulas" for Andrographis. And this herb as you said is liver protecting.
    I would have still continued on the same path forever but would never have known I was co infected unless Doctor R suggested it to me...because I was tested by a local lab for co infections many years ago and was told I was negative.

    Much prayers and love goes out to you...let me know what you think, if you have questions...anything at all.

    Last edited by itsmylife; 08-15-2007 at 11:59 PM.

     
    Old 08-15-2007, 11:20 AM   #49
    itsmylife
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    Re: My appt today with Doctor Raxlen

    I used herb pharm siberian ginsing..I did have immediate improvement in fatigue levels, but a very small improvement...Again, I think this supplement played a role in helping my own immune system respond to the Lyme and without it, I don't think my test results would have come back IGM positive. When I took it, I felt a "shift" in muscle strength and I think that was my immune system responding.
    Thinking of you,

    Rodney

    Last edited by itsmylife; 08-15-2007 at 11:50 PM.

     
    Old 08-15-2007, 12:43 PM   #50
    Betterdaysforme
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    Re: My appt today with Doctor Raxlen

    Dear Rodney,

    I am so glad that you are feeling so positive about your move. I know sometimes I get to the point that I feel like I'm fighting Lyme but it's not really Lyme because it is taking so long. You know how that goes. But in my heart I know it's Lyme because of so many pluses (sp) on the blood test and Dr. Crist's analysis. Because of the visual accuity test he felt I had either bartonella or babesia also (can't remember which now) but he treated for everything for safety's sake. I think the only thing in your list of stuff I hadn't taken was the mepron. I forgot to tell you that when I was going to the naturalist he was so excited because he came back from a conference in California and had a vial of BB and muscle tested me just like Dr. Raxlen tested you. It was positive. This has been about 2 years ago and I know people I told about this thought I was nuts so it's good to know a real live Lyme doctor does the same thing.

    I'm like you and the fatigue is overwhelming. That is why I'm not sure about the trip for the reunion. Ronnie will be driving and that's a lonnnggg drive. I know I'll be a wreck if he drives on his own but I don't want to be miserable and make the trip miserable for him too. Now that I have resolved (I hope) the twitching that part of it wouldn't be bad but the arthritis and staying cramped in a car for 4 days wouldn't be much fun. I have heard cherries, cherry juice, or cherry capsules helps arthritis though so I need to check that out. There's also the dreaded bladder problem. Every time I turn around I have a bladder infection but I treat it and 3 days later it's back. I'm sure it's just the bacteria going thru the bladder which I guess is a good sign. I can take sarsaparilla though and except for the urgency at times it at least doesn't burn. I actually saw an ad in the paper the other day called Better Woman I think that is supposed to work like detrol to stop spasms without side effects. I need to look it up. I can understand the spasms because the bladder probably isn't thrilled with the bacteria (dead or alive) passing through it. We do have the wheelchair from my hospitalization last year so that would help the mobility but I'll just have to wait and see. I was hoping the ginseng would be a help and planned on taking just a morning dose because Mr. Buhner said if you take it too late in the day you'd be hyper. I also wonder if a different brand wouldn't be so hard to take because he liked that one because it was so potent? I don't want to compromise the requip. I even thought about contacting the acupuncture doctor I went to years ago from China. She's fabulous and might have an herb for me that wouldn't be bad.

    I am hoping you will see some improvement soon and you can keep your home. I know the kids love it and it's so nice when you can be by yourselves. If you have to move in with a relative though it might not be so bad because then you'd have some help and maybe even a shoulder to cry on if you needed it. It will all work out.

    I'm not surprised you were thinking of me because we seem to have this unique "connection". One that I have always appreciated. It makes me sad to know you are having to start again because between you and Sleeperwoken I can't think of anybody else except Ticker who has been so "dedicated" to getting better. We all have good intentions but "fudge" every once in a while. The three of you are so good both by investigating how to proceed and you were all so "strict" with yourselves. Sooner or later your perseverance will pay off. I promise to check in more and follow your progress.

    Love,.
    Maureen

     
    Old 08-17-2007, 12:16 AM   #51
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Received a letter today that I was approved for 12 weeks of IV meds.

     
    Old 08-17-2007, 06:35 AM   #52
    Tony64
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    Re: My appt today with Doctor Raxlen

    Rodney, that's great! You're on your way of reclaiming your life back. God bless you and good luck.

     
    Old 08-17-2007, 07:02 AM   #53
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    Re: My appt today with Doctor Raxlen

    THAT IS AWESOME!!!!! Congrats on getting the PICC line approved!

     
    Old 08-17-2007, 10:48 AM   #54
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    Re: My appt today with Doctor Raxlen

    Dear Rodney,

    This is such good news. I will be watching your progress carefully so I can decide how to proceed. Make sure you do everything you can to support the liver because my enzymes jumped from 40 - 740 in a week and I had to stop the rocephin. The worst part was throwing away the $2500 worth of rocephin I had picked up the day before when I had the bloodwork done. I think I kept it in the fridge for a month because I felt like I was flushing all that money down the toilet. I found it easiest to lay out in a row all the alcohol swabs, meds, saline, & syringes in the order I would use them so I wouldn't be fumbling for something when I was infusing. This made for a quicker cleanup too. I also loved that all bloodwork came from the picc-line. I'll be thinking of you.

    Love,
    Maureen

     
    Old 08-17-2007, 03:16 PM   #55
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    Re: My appt today with Doctor Raxlen

    Congrats!!

    I just finished week #15 of I.V. Rocephin via a PICC and I feel a definite inprovement.

    Getting the PICC was horrid for me, maybe yours will go painlessly. I still get stuck for blood tests. My LLMD says it's too much trouble to flush the line, take the blood out, flush again, and also says it's not as accurate as when they stick my other arm and get it right from the source.

    My insurance co. is still paying. God knows for how much longer.

    I am so frappin' happy for you!

    Peace and health and good luck with the IV.
    Mickie

     
    Old 08-17-2007, 08:53 PM   #56
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Thanks Tony, Keylyme, Mickie and Maureen.

    If I had started this protocol three years ago when I first began treating myself with the Buhner system and the detox baths, I think I would be in deep trouble. I have felt like I was close to the end for over a year now with all the improvements I made...So I am really hoping for a speedy recovery...maybe like someone who was just infected six months ago.

    Thanks for the support guys...going back out to NY city again on Tues for a follow up.

    By the way, does anyone know if one metric unit is equal to one CC. The person at the pharmacy told me this but one metric unit of B-12 does not look like much...compared to the 2 cc I injected at the doctors office. I still have several vials of B-12 left and am on my last syringe. Little confused by this.

    Ticker, if you are reading this, when you were on the Mepron, did you sweat a lot after you took it? My body burns up. I'm sure that's a positive thing.

    Last edited by itsmylife; 08-17-2007 at 08:55 PM.

     
    Old 08-18-2007, 06:24 AM   #57
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    Re: My appt today with Doctor Raxlen

    YEAH RODNEY!

    Very happy news here. Hope it is the key that you need to get yourself to feeling on top of the world!

    Can't wait to hear about your trip in N.Y.

    Hugs to you...have a happy day today...


     
    Old 08-20-2007, 09:25 AM   #58
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    Re: My appt today with Doctor Raxlen

    Jo, how are you feeling these days..are you still treating?

     
    Old 08-20-2007, 11:01 AM   #59
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    Re: My appt today with Doctor Raxlen

    When I was on Mepron I was terrible. I never really sweated before, even living here in Florida. Lord that all changed with Mepron. I think I could look at the temp and start sweating.

    Could not even wear any type of lotion, makeup etc...the sweats were that bad. Almost like night sweats.

    Funny thing, I was outside yesterday with the heat index @ 105, and all of a sudden I noticed...HEY I am barely breaking a sweat here! Hope that is a good sign.

    Keep on sweatin'!

     
    Old 08-22-2007, 11:01 AM   #60
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Saw doc yesterday. Took my son with me.
    Results of brain spec scan showed "Perfusions" in the brain.
    Results from the lab showed a break down of the specific strains of Lyme I am showing positive IGM results for:

    BB Sensu Stricto
    Borrelia Lysate
    B Garini
    B Afzelii
    The co infections:
    Babesia
    Ehrlichia
    The following were also positive IGM but I don't understand what they are
    OSPA and OSPC
    OSPE 1 and 2
    LFA
    C2 and C6
    VR1 and VR2

    Doc faxed letter and lab results to employer as I left the office and clearly stated the prognosis at this point is "uncertain."
    Today I was contacted by the employer asking me to call the doctor to have him fax a script with a return to work date.
    I told her in other polite words, these are serious conditions and the doctor states in his letter he does not know when I will be returning and to contact his office with any questions as he requested in the letter.

    During the visit, the doc seemed very disturbed I was more concerned with taking care of the monthly doctors notes then I was concerned about the disease itself. At one point he asked why I was so "obsessed" with the doctors note. And I politely said I think we are misunderstanding eachother. I am not concerned with the doctors notes every 30 days excusing me from work, it is my employer...it is their process...and he said he doesnt have the resources to do that...I think he may have been having a tough day. My feelings were definitely hurt and I don't know why. Having my son in the office was probably not a good idea either even though he was well behaved for the most part. I guess the docs feeling was, look at all this evidence, what else do they want? And I guess part of me wants to think it may be possible to return to work in four to eight weeks....why should I call work and say I wont be back for many months and have them just terminate my spot...

    Anyway, as far as the lab results, I have no questions other then the positive Igm's for the above mentioned strains, but bottom line for me is treatment is the same and the IV treament begins on Tuesday...As far as the SPECT scan, nothing surprises me, if he told me there was a rock in my head from all the years of this, I would have replied "O.K."

    My feeling is I'm obviously ill, lets treat it and take it month by month and see what happens..follow along with the employer with the notes which take one minute to write and another to fax. I just can't get past that part.

    They wrote the letter while I was there but forgot to put in the data about the brain SPECT scan, and I walked back in the office and was told that was all they could do..they were just too backed up. They even forgot to take my credit card number and called me while I was down the street after I left.

    I think my feelings are too sensitive or something. I don't know why it is bothering me so much and now I feel as though I should have asked more questions about the disease.

    Last edited by itsmylife; 08-22-2007 at 11:51 AM.

     
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