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  • My appt today with Doctor Raxlen

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    Old 07-21-2007, 11:18 PM   #31
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Quote:
    Originally Posted by ticker View Post
    Hi Rodney. I am still being treated for Lyme and HGE. I am going to be retested for Ehrlichiosis at my next appointment and hope it will be negative.

    I had a severe case of Babesiosis and had to treat it more than once, but it is finally gone! I also had Mycoplasma, both types of Ehrlichiosis, and Lyme.

    For me, eradicating the Babesiosis and taking the cyst-buster Tinidazole with Minocycline have helped a lot.

    I also developed Hashimoto's Thyroiditis, a type of auto-immune hypothyroidism. I knew for years that I had a thyroid problem and I was repeatedly told my tests were normal. Finally a docor ran the antibody tests, and they were extremely elevated. Some people who have Hashimoto's have normal tests but have elevated antibodies. Treatment is warranted when antibodies are present.

    Thyroid disorders can also cause many symtpoms. I recommend that people who have Lyme get thyroid testing done. Tests to request are the Free T3, Free T4, and thyroid antibodies. They are not usually done but are necessary for a comprehensive view. Lyme can affect the hormones.
    Ticker, would you say you have a high quality of life back?
    How long did it take for you to be diagnosed with Babesia..How long were you on Mepron and did you feel it was not long enough? I was so dissapointed to find out the bottle of Mepron was 700 dollars and I paid 20 percent...Even the generic Arzithro (Zithromax) was 120 dollars after unsurance.

     
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    Old 07-26-2007, 01:35 PM   #32
    Smyle
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    Re: My appt today with Doctor Raxlen

    Hi It's My Life-

    I am sorry... I didn't see your reply to me until now.

    Yes, I feel that this protocol is helping.

    I had aggressively treated Lyme- all antibiotic. 1 month doxy, 3 months ceftin, 7 months high dose ceftin/ketek combo (made great strides on this combo, too) 2 months I.V. Rocephin plus Ketek (again good results until I had an anaphylactic reaction) back to Doxy- high dose for 5 months.

    What I was left with were mostly the symptoms you see associated with Babesia- night sweats, air hunger, palpitations, headaches, fatigue, disequilibrium. Plus tremors, vision problems, pain in my heel... a few others.

    I was planning on treating for the life cycle of a red blood cell which is 120 days, but now I have been hearing about a lot of people who have done long term Babesia treatment and have had to re-treat. Some of these people still test positive until the infection is completely gone. I have never had a positive test. Just the symptoms.

    I recently added Artemisinin and it is really helping, but has been really difficult to be on. I have had herxes on this that are as bad as the first herxes in the beginning. The worst being awful feelings of despair and depression. I am more than happy to ride them out knowing it will get better, but if you do add Artemisinin be prepared for this. Make sure you have your Mom, your kids... someone to offer a lot of love, support and TLC... or you can always get it here.

    I know you will be on the road to health soon. Please let us know how it goes.

     
    Old 07-26-2007, 08:57 PM   #33
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Hi Smyle. The 120 treatment red blood cells is not something I've heard of. I'll have to check that out. The protocol that I started on Monday included Zithro, Mepron and Artimesien. I have noticed herxing, but it's tollerable so far. I usually wake four hours into my sleep though and wake to disturbing thoughts..like my brain is being zapped also. I still continue with the detox baths everyone night.
    It is very disheartening to hear how long you have been treated yet are still suffering with such severe symptoms.
    Please update me with any info you may feel helpful. It's good to know about the depression with these meds because it's so easy to give into it forgetting the real cause, the meds being effective.
    I wish you a quick recovery!

     
    Old 07-27-2007, 04:57 AM   #34
    Smyle
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    Re: My appt today with Doctor Raxlen

    Hi It's My Life-

    Please don't let my story discourage you. I had sensed that something was wrong for about 4 years. I had tingling, chest pain, difficulty swallowing. I went to my PCP and they referred me to specialists, but no one could find anything.

    2 years ago I think I had the misfortune of being bit again. I had a rash, not a bulls-eye, but little red dots all over my leg. Things progressed very quickly and were very neurologic. My initial symptoms led the Dr's to think that I had a brain tumor.

    I only test positive for Lyme, I have never tested positive for any of the co-infections, but I know I am co-infected. I have responded to the Babesia treatment. I also have high titers for old viral infections. (EBV, CMV, hhv6- which causes Roseola, and Parvovirus)
    Some LLMD's believe that the stress of Lyme on the immune system can reactivate these old viruses... So, I guess I am kind of a toxic soup, so to speak.

    I know I will get better... I know you will too. I don't want my story to discourage anyone, but to just prepare people that this illness is a long road sometimes.

    Some get better quickly, others take longer- but we will all get there.

    Last edited by Smyle; 07-27-2007 at 04:58 AM.

     
    Old 08-10-2007, 08:20 AM   #35
    Tony64
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    Re: My appt today with Doctor Raxlen

    Hi Itsmylife. I've been reading your posts and looks like you are pretty happy with outcome of treatment so far. Is that a fair statement? I also went to Dr. R. Started IV Rocephin one week ago. I think I herxed for first 5 days. Symptoms got worst and bad new ones. Yesterday and today, back to old same. Have not yet received results of blood tests but Dr R. seems pretty confident I have some co infections. Are you happy with Dr./Treatment/outcome trio?

    Good luck.

    Tony.

     
    Old 08-10-2007, 09:20 AM   #36
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Tony, I am very happy with Dr. R's willingness to help and his dedication to helping. Personally I like him a lot. I trust him. My progress though has been slow...partially because my PICC line was denied twice because the health insurance company states the reason for the line does not meet CDC criteria, even though a have one test from Quest with two IGM bands and 6 IGG bands...The tests were repeated a month later and I again showed two IGM bands for Lyme and positive IGM bands for babesia and erlichia.
    So I don't know what the insurance company requires. I ask them "What exactly to you need to proceed?" and feel very angry because they point me to a link on their web site which does not give me the answer.
    Mabye I will call their office now.
    I'm sure he will get it approved but I just need him to figure out what they want. He's a good man.

    Last edited by itsmylife; 08-11-2007 at 07:09 PM.

     
    Old 08-10-2007, 09:25 AM   #37
    itsmylife
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    Re: My appt today with Doctor Raxlen

    I called Dr. R's office. The general feeling I am getting is the insurance company does not want the PICC line inserted in Doctor Rs office..They may be denying because they want it done elseware...So Doctor Rs office will refer me to someone else and they said they have better luck with that.

     
    Old 08-10-2007, 11:16 AM   #38
    Tony64
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    Re: My appt today with Doctor Raxlen

    Hi Itsmylife. I had it done at the hospital. I called in and made a same day surgery registration and they gave me a date for the procedure. I am sorry you are getting the run-around from insurance co. Hang in there. Working in the health care myself, I know persistence pays when it comes to getting approved for procedure from insurance co. Put it this way, now you know what have been causing havoc in your body and ,as frustrating as it is, you are doing something about it. There will be always a way to get around. You just have to go through the standard initial protocol in order to get treatment you need and on the road to recover. Being positive is half the battle. Hang in there.

     
    Old 08-11-2007, 12:38 PM   #39
    jenillumine
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    Re: My appt today with Doctor Raxlen

    Quote:
    Originally Posted by itsmylife View Post
    Tony, I am very happy with Dr. R's willingness to help and his dedication to helping. Personally I like him a lot. I trust him. My progress though has been slow...partially because my PICC line was denied twice because the health insurance company states the reason for the line does not meet CDC criteria, even though a have one test from Quest with two IGM bands and 6 IGM bands...The tests were repeated a month later and I again showed two IGM bands for LYMe and positive IGB bands for babesia and erlichia.
    So I don't know what the insurance company wants additionally to approve and that is making me very angry because I thinks it's unfair of them not to at least tell me what I need to do.
    Mabye I will call their office now.
    I'm sure he will get it approved but I just need him to figure out what they want. He's a good man.
    Itsmylife~
    I just wanted to thank you for posting your adventure
    to NY to see Dr. Raxlen. I felt as if I were right there with you.
    And your bravery gives me strength.

    I was very moved by your posts and couldn't wait to share it
    with my husband. You have a way of writing and sharing an account
    that sucks you right in. Especially if you share symptoms.

    I wish you well and success!!!~~
    I hope you get the IV antibiotics as soon as possible.
    And the insurance CO. at least stops giving you the run
    around and starts cooperating.

    I pray you get better.
    And regain your strength and some of
    you life back that this awful disease has stole
    from you and your family.
    Jennifer

     
    Old 08-11-2007, 07:14 PM   #40
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Thanks Jen and Tony.

    Trying to keep my spirits up. I made a good friend recently and she has helped a lot.
    I have some family time scheduled tomorrow..and for this afteroon and eve I decided watching the first three Rocky films might be good for my motiviation. I keep trying to reset, and re focus..and plan my next move with a fighting spirit.

     
    Old 08-13-2007, 12:37 PM   #41
    cjFTWORTH
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    Re: My appt today with Doctor Raxlen

    Good morning Rodney and all...

    I checked in to site as I wanted to see when my bladder symptoms started (seeing doc today). Your post caught my eye and I read through it (well, mos of it) .

    I hope you get PICC line approved soon and continue to be encouraged. Reading this stuff is hard, all the struggles, the emotional upheavel that untreated, misunderstood illness causes... I wish you all well. I care.

    Adn as you come across my radar, I do pray for all my lyme cohorts. Carol

     
    Old 08-13-2007, 01:06 PM   #42
    itsmylife
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    Re: My appt today with Doctor Raxlen

    Thanks Carol. Today is the day I have finally gathered the motivation to contact Oprahs staff via her website. To try and explain the devastation, so many probably millions are suffering through with this disease and co-infections. I did the best I could do with the letter. It is very difficult to put all of what we are suffering through physically, emotionally, financially, the lost doctors, the links between Lyme and other diseases like MS and Parkinson’s. The refusal of treatment...
    I've done the best I can do and if I hear nothing, I can now live knowing I really did try my best and if there is anyone on the planet who could really impact and change the worlds vision of this disease, it's certainly Oprah.

    Rodney

    Last edited by itsmylife; 08-13-2007 at 01:09 PM.

     
    Old 08-14-2007, 09:46 AM   #43
    jennifer12345
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    Re: My appt today with Doctor Raxlen

    New to the forum as of yesterday.....Thanks to itsmylife and all for this resouce.

    I have been ill since Dec. 12, 2006. Prior to this date I was in East Africa (July-Aug), Central Oregon (Aug-Sept), and Montana (Oct). Pulled a tick of my daughters knee in Africa and spotted several tick on my pant leg, don't remember a bite nor a rash.

    It began with extreme vertigo and flu like symptoms. About a month later all heck broke loose, eye pain, blurred vision, numbness, tingling, burning, creepy feeling under the skin, major fatigue, dizzyness (off-balance) almost leaning to one side, muscle weakness. I have been to several doctors, and been tested for everything including; lyme (not Western Blot), MS, AIDS, Malaria, MG, sinus infections etc. All came back negative with the exception of one MD that notifed me my Magnesium level looked strange, and to get it retested.

    I have been prescribed a few antibotics since I became ill, once for a sinus infection and then again in June when I started having bladder spasms?

    I had always thought it was lyme, but the pieces really began to come together in June, when I was pres. BIAXIN for 15 days (high dose). This is when I felt a little better....?

    However in the last several day, the eye pain and the freaky skin sensation (numbness, tingling, burning, pins and needles) are back.

    Yesterday, I got serious. I want my health back. I spent the day in front of the computer, collecting names of doctors and reading anything I could find on lyme. I read the thread by itsmylife visit to Dr. R. (awesome). At the end of the day I was completely exhausted and on information overload.

    Decided to watch the sunset with my honey. As I watched the sunset I prayed that I would be lead to the right doctor for me. Went to bed, turned on the TV and there was Dr. R as big as life on Discovery health!

    Woke up this morning and called Dr. R. I am scheduled to consult end of Sept. I will keep you posted. If this is not the problem...I have no idea;(

    Thanks,
    Jennifer12345
    Washington State

    Last edited by jennifer12345; 08-14-2007 at 09:49 AM.

     
    Old 08-14-2007, 12:37 PM   #44
    Tony64
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    Re: My appt today with Doctor Raxlen

    Welcome Jennifer. Good luck with your LLMD"s visit. I have a feeling it will be the best money you ever spent. Hang in there.

     
    Old 08-14-2007, 07:05 PM   #45
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    Re: My appt today with Doctor Raxlen

    Hi Rod.

    You are brave for going on trains, riding a rickshaws and visiting a big city. It took courage to do what you did. I think you deserve a standing ovation.

    I'm on a wild rollercoaster now so I can't type too much.

    i can't even do capitol letters any more.

    i am so pleased that your visit with the llmd went well. you spilled your guts to a total stranger and he listened to you. he didnt pass judgement and he didnt say you were crazy.

    i am very relieved that you will get treatment, you weren't mugged and you did it! and you deserve it.

    my picc was inserted in my llmd's office. no anesthesia, no tranquilizer, no a thing. boy did it hurt. i was terrified. my body was shaking even though i did deep breathing and kept my eyes closed and tried to think meditative thoughts. i dont know how the nurse inserted it with arm shaking.

    i want to stay on it for a long time since it is helping. i hope to manage at least a year.

    my insurance company paid for last week's and this week's medicine - wow.

    i took my kids with me. my son read from a book and my daughter took pictures. she's still mad at me for getting sick for 3 years, so she wasn't about to pat me on the back and give me an "atta girl"

    the first 2 or 3 days was awkward trying to do the saline, rocephin, saline, heparin. but now i've got it down to a science. i even tried to mow my lawn one day while i was dripping the i.v

    i herx and pretty badly. but on the other hand i climed a ladder and replaced my gutter screws 'cuz it was falling apart. then i have those days when i want to die.

    i wish all the best my friend. you are about to take a long slow walk through the lyme recovery forest. some spots are dark and you want to turn around and go back ..... some days are bright with sunshine peeking through the tree canopy and the path is clear and it's not so scary.

    i also cried while reading this thread. i should go buy stock in Kleenex.

    i've a few questions to you but cant remember them.

    mickie

    Last edited by 6Blues; 08-14-2007 at 07:08 PM.

     
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