It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board

  • Saw my Lyme Doctor Yesterday... Sharing Info

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 12-01-2004, 01:42 PM   #1
    dealer1111
    Senior Veteran
    (male)
     
    dealer1111's Avatar
     
    Join Date: Nov 2004
    Location: Phil. PA
    Posts: 615
    dealer1111 HB User
    Saw my Lyme Doctor Yesterday... Sharing Info

    My doctor explained to me that he has been treating Lyme for three years, and I asked many questions, he is learning as many do, with experience.

    I complained I got really sick after two weeks off the antibiotics, then when he started them up again I crashed. He said this isn't so bad and that it can be expected.

    We spoke about co-infections, heavy medals, and other things. We are doing testing for heavy medals, and I am being re-tested for many of the co-infections.

    I ask about IV antibiotics, and he explained he has had just as much success with oral treatment as IV over the long run. He explained that at times I may feel totally lost, and this is to be expected.

    We did speak about many other options from Bee Venom, (he isn't sure about this yet or that there is any proof that would cause him to treat me this ways.)

    He did start me on IV of Hydro peroxide and I had a very bad die off last night, one of the worse in a while, I was only given half the treatment, due to his experience and that people have a really bad effect if he treats with the full dose. It took an hour for the full IV to enter my body and about three hours after that I became sick from die off. (I believe this is what it felt like.)

    He may include colloidal silver with my next IV treatment something hes been having good test runs with, but the die off has been very strong so he did only the one IV Hydro peroxide yesterday.

    Today I am feeling very good, (not sure if its from the treatment or just I feel good) but I will take it.

    I had mentioned before that I have started working out, I still do, and it seems to help. I fatigue very quickly, (in five minutes) he said this is normal with Lyme and it makes the body not absorb oxygen correctly from the blood into the muscles, is what is suspected and what causes the fast fatigue.

    Just sharing information with all, hope it helps

     
    Sponsors Lightbulb
       
    Old 12-01-2004, 02:40 PM   #2
    sleeperwoken
    Senior Veteran
    (female)
     
    Join Date: Nov 2004
    Location: New England
    Posts: 1,215
    sleeperwoken HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    Wow, that's a lot of good stuff. Thank you for sharing it with us and please tell more as you go along. What oral antibiotics has he got you on right now? Also, did he do the IV in the office? It was hydrogen peroxide? I don't get that, can you tell me more please...

     
    Old 12-01-2004, 03:23 PM   #3
    laurie864bla
    Senior Veteran
    (female)
     
    laurie864bla's Avatar
     
    Join Date: Feb 2004
    Posts: 1,319
    laurie864bla HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    Hydrogen peroxide IVs have never been proven to work for any ailment and are extremely dangerous!! Many have been deadly. Please Ekim--BE CAREFUL!!! We want you around and I know you are desperate to get well but this is very dangerous!!!

     
    Old 12-01-2004, 03:35 PM   #4
    ticker
    Senior Veteran
    (female)
     
    ticker's Avatar
     
    Join Date: Jan 2002
    Posts: 5,790
    ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    Ekim please do be careful. Research this treatment thoroughly. Which doctor are you seeing?

     
    Old 12-01-2004, 03:57 PM   #5
    dealer1111
    Senior Veteran
    (male)
     
    dealer1111's Avatar
     
    Join Date: Nov 2004
    Location: Phil. PA
    Posts: 615
    dealer1111 HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    I will double check but it was I think [H2]...

    Here are the Meds I am currently on, we have been through a few types, and I have included them first:

    Started with:
    Doxycyline 100mg capsues by Watso.
    Dose, one pill two times a day.

    And with the Doxycyline I was taken:
    Cefuroxime Axetil 500mg Tab by Ivxgo
    1 per day.
    But I was doing worse and was increased to two per day.

    I then got sick from the Doxycyline and it was changed to:
    Biaxin XL 500mg Tablet SA by Abbot.
    Dose two per day.

    And right now I am on:
    Biaxin XL 500mg Tablet SA by Abbot.
    Dose two per day.

    And also with the Biaxin I take:
    Rifampin 300mg Capsules
    Dose 1 per day.
    And along with the Biaxin & Rifampin and I am now taken Silver 400 Mild Silver Protein 400ppm twice a day.

    I have been on Cats claw or Prima Una de Gato along with a handful of things like fish oils, vitamins, and many other types of supplements.

    I am scared that my skills I have worked for all my life are dissappearing, I am not the same person I was a year ago. There is so much to learn about this. My doctor gave me three books about Lyme: One we are reading now is very good, but very sad for many. "Everything you need to know about Lyme Disease."

    For me I can feel I am just holding on, or I am wrong, but should I have crashed two weeks off the antibiotics? After a year of treatment.

    Thank you all so much, and yes it may seem I am a little over reacting sometimes with my posts. But this thing sometimes makes me feel like I am on the edge of losing everything, and if this isn't enough its going to make me crazy (at times) doing it. I am in very late stages and I think even lucky to be standing.

    But I fight it hard with a smile (when I can) although it my be hollow, I can remember what it felt like at times to have a smile that feels good...

    1000% thank you to all here!!!

     
    Old 12-01-2004, 05:00 PM   #6
    cjFTWORTH
    Senior Veteran
    (female)
     
    cjFTWORTH's Avatar
     
    Join Date: Nov 2004
    Location: Los Angeles, CA
    Posts: 1,221
    cjFTWORTH HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    Good to hear that you ARE feeling better. Yet I must admit, the crash course in lymes I've been on over the past 2 weeks is scary. I don't know squat about the treatment you took yesterday but I do hope for the best and know you heed the great advice on this board.
    This place seems more like a 'house'. You know, when people are trying to re-enter society, they enter 'half-way houses' and strong bonds do occur. People come ago, etc. This lyme board seems to be a pseudo house/home for many.
    FYI, I picked up my medical records today and have been reading over them. I'll take them with me tomorrow when I go see the neurologist in Dallas. I'm anxious about appt. Much about the $$ and that she'll do whatever is possible to make appointment(s) cost effective FOR ME. To think that tomorrow we might just 'consult' and I walk away with $400 less dinero and needing another appt. makes me feel worse!
    I've had some kind of bronchial stuff/fever for several days. I want to move forward and get a diagnosis of TRUTH.
    Thanks for listening.. It really is great to hear that people do improve from this disease. I don't know if I have it, and I don't have the dibilitating symptoms that many of you have. I do know my health has taken a rapid turn for the worse over the last 2 months AND over the last 3 weeks, physically and mentally.
    Take care and be keenly in tune with that body of yours... cj

     
    Old 12-01-2004, 05:05 PM   #7
    Ozarka
    Senior Member
     
    Ozarka's Avatar
     
    Join Date: Nov 2004
    Posts: 124
    Ozarka HB User
    fatigue, oxygenation and blood?

    Ekim,
    I hope you get to feeling better.
    The hydrogen peroxide does sound scary to me as well, so do be careful.
    Another thing you said in your post caught my eye, that fatigue is normal with lyme as the body doesn't "absorb oxygen correctly from the blood into the muscles," I tested with thick blood or blood viscosity (fibrin) and so they started looking for an infection (thus got to the lyme issue and this thus led me to this site).
    Is blood viscousity thickness typical of people with lyme?
    Will antibiotics make it go away or can a person do something?

     
    Old 12-01-2004, 07:03 PM   #8
    laurie864bla
    Senior Veteran
    (female)
     
    laurie864bla's Avatar
     
    Join Date: Feb 2004
    Posts: 1,319
    laurie864bla HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    It is thought by many doctors that "sticky blood" or Hughes Syndrome interferes with antibiotic arsorption. I know a few people on long term abx that take heparin shots, an anticoagulant, for this very reason and said it helps immensely. A couple more I know do it w/ out a docs supervision by taking a baby aspirin a day which is probably safe to do. No more than that tho w/out a docs supervision--you could develop all kinds of bleeding problems if you are not working with a good doc watching for it. There is more info out there on this subjest and heparin if you look. Good luck.

     
    Old 12-02-2004, 04:02 AM   #9
    sleeperwoken
    Senior Veteran
    (female)
     
    Join Date: Nov 2004
    Location: New England
    Posts: 1,215
    sleeperwoken HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    My doc was saying that sometimes doctors put people on blood thinning stuff even if their blood is normal because it makes the abx work so much better. She didn't do that with me but she told me about that.

     
    Old 12-03-2004, 10:10 PM   #10
    Lymabean
    Newbie
    (female)
     
    Lymabean's Avatar
     
    Join Date: Dec 2004
    Location: Houston
    Posts: 2
    Lymabean HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    This is my first posting... I've never done message boards or chat rooms before... but I definitely related to "Saw my Lyme Doctor Yesterday." I found you by searching for a Lyme specialist in Houston. From my research it seems that Dr. Salvato is the only lyme doctor currently taking new patients in Houston. She is in the same office as Dr. Harvey (Diversified Medical) who I was told was the only lyme savvy doctor in Houston... however, he is now devoting his efforts to lyme research. Then my neighbor told me about someone who was seeing Dr. Gathe with tremendous results (she is now almost symptom free and thrilled to have her life back). When I called Dr. Gathe's office I was told under no circumstances would he take any new patients (there are days when he sees 60 patients) and he wants to focus on HIV patients. I did the two Western Blot tests with Igenex in Palo Alto, California (as a native Californian in Houston I wanted to ship myself back for testing). Dr. Salvato said I was positive on both bands and my diagnosis was chronic lyme. I have been doing the oral antibiotics (approx. 4 months)... the first caused nausea, second was very expensive... so have been on Cephalexin (500 mg 4x/day). Does anyone know of a Neurologist who specializes in Lyme? Karen, the lady who went to Dr. Gathe said I have to get more aggressive she did a PICC line with Rocephin 3 GM IV... she sent me her journal for the past year and it was pretty frightening... all the medications Imuran, Prednisone, Ortho-Novum, Paxil, Norvasc, Neurontin, Ambien for sleep, Diflucan as needed, Zithromax, Indomethacin 50 mg seemed to help numbness and mobility...Flagyl 500 then to 1500 mg 3x daily to open up cysts and trick the spirochete into taking on a cell wal so that the antibiotics can attach... Actually, she described most of the symptoms I've been having of weight gain (40 lbs. since coming to Houston about 5 1/2 years ago), blood pressure went from low to high, tremendous stabbing pains, with constant dull pressure, muscle spasms and cramping, now have asthma as well with loss of hearing, ringing in ears, sometimes blurry vision, disoriented, memory loss, red prickly rash from ankles to mid calf, swelling, numbness and tingling... it feels like I'm just unraveling.

    Did not mean to go on... my hope is that someone out there might possibly know of a Neurologist who is familiar with Lyme and alternative treatments in Houston. When I asked about being more aggressive or other treatments I was referred to a Rheumatologist who said, "we don't have Lyme in Texas" and "the statistics are against your even having Lyme." He was extremely patronizing and stopped just short of saying it was all in my head. When I went back to Dr. Salvato's office to ask why she would refer me to someone like that... she wouldn't see me, had me fill out a form to have one of her medical assistants call after 3pm. This was typical, they don't take calls during the day, you can fax or email but nothing will be done until after 3pm and then you usually don't get a response, it can take several days to get a call back and prescriptions are not called in as promised, so you have to wait until the next afternoon... it is all very frustrating because you have to follow their tight regime or not get any help.

    Any referal, alternatives or suggestions would be greatly appreciated.

    Thank you.

     
    Old 12-04-2004, 10:52 AM   #11
    dealer1111
    Senior Veteran
    (male)
     
    dealer1111's Avatar
     
    Join Date: Nov 2004
    Location: Phil. PA
    Posts: 615
    dealer1111 HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    I really hate the medical system, I think all doctors should have Lyme, and then you would see a big change in the thoughts they think. Shame on their ingnorence, and their ability to distroy peoples lives has to stop!

    I have gone back to every doctor that told me I was crazy and shoved it in their faces, explaining if it where up to me and my lyme suffers you'd be back on your way to school, first grade to learn about tick illnesses...

    Someday no matter what someones going to hear us (me) screaming. About to go park a seat on the whitehouse and not leave untill I speak with someone (the president) or get arrested.

    What do we have to do as a group to try to help all others including ourselves about Lyme, die first... USA, doctors, and insurence companies, your not going to keep me quite, I am coming after you like no-one you have ever met.

    My goal to be come a bigger headach to them, then Lyme is to us.

    I have contacted lawyers and am trying to get a class action lawsuit started against the medical trade, and insurence companies, and have a couple appointments next week. ...Not going away ever...

    Last edited by dealer1111; 12-04-2004 at 10:52 AM.

     
    Old 12-05-2004, 10:48 PM   #12
    Lymabean
    Newbie
    (female)
     
    Lymabean's Avatar
     
    Join Date: Dec 2004
    Location: Houston
    Posts: 2
    Lymabean HB User
    Re: Saw my Lyme Doctor Yesterday... Sharing Info

    Hooray for you... I'm with you and want to thank you for your encouragement that none of us has to be a lone ranger in this battle!

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Just realized I have Lyme, Dr. no help, friends unbelieving??? DavinoPA Lyme Disease 19 08-10-2008 08:31 AM
    Could this be Lyme - Please help! *Robin* Lyme Disease 11 03-27-2007 04:32 PM
    Doctors: Number one reason why Lyme patients get so sick! dealer1111 Lyme Disease 30 02-19-2006 07:54 AM
    Lyme. Why treatment is a$$ backwards itsmylife Lyme Disease 15 03-22-2005 06:54 PM
    Need 'How To's' for doctor shopping, please (& an update) Peeps Thyroid Disorders 10 03-22-2004 04:34 PM




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 11:50 AM.





    © 2022 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!