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



Lyme Disease Message Board

  • How Long, Oh Lord?

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 08-18-2005, 06:06 PM   #1
    asherms1
    Junior Member
    (male)
     
    asherms1's Avatar
     
    Join Date: Mar 2005
    Posts: 20
    asherms1 HB User
    How Long, Oh Lord?

    I have just finished my third week on Rocephin. This follows 3 1/2 months on orals (biaxin, augmentin, flagyl).

    The first five days on Rocephin were marked by some major cardiac arrythmias, for which I was hospitalized at Johns Hopkins. (Herx?)

    I thought 30 days on the IV would be the atomic bomb and I would be symptom free. Unless a miracle happens in the 4th week (let it be so), this won't happen.

    I know some of you have been under treatment for a lot longer. I was hoping some of you would tell me some success stories that would be encouraging.

     
    Sponsors Lightbulb
       
    Old 08-18-2005, 08:58 PM   #2
    TINUVIEL
    Senior Veteran
    (female)
     
    TINUVIEL's Avatar
     
    Join Date: Feb 2005
    Location: Delmarva area
    Posts: 722
    TINUVIEL HB User
    Re: How Long, Oh Lord?

    Hi,

    Welcome to the board.

    Sorry to hear you're ill.

    One of the things about Lyme that makes it such a challenge to treat (and believe me this is just one!) is that the reproductive cycle of the organism is so much longer than that of others.

    For example, a certain bacterial infection (non-Lyme) may take a week to eradicate. This is because the reproductive cycle of the bacteria is only a few hours, so in a short time like a week the whole infection can be killed off.

    The Lyme bacteria however, are another matter. The reproductive cycle is 4 weeks! So in order to effectively kill off the infection it can sometimes take over a year. I have heard from people who took 2 years to put things right. So I know it can get discouraging but really, 3-4 months is not long to be in treatment, so try not to get discouraged if you're not seeing results just yet. It will happen, but it is gradual with ups and downs and so you must persist and persevere.

    Were you tested and treated for co-infections? Co-infections need to be addressed in order for Lyme treatment to be successful. Are you near Johns Hopkins? There is a very good Lyme support organization in the DC area.

     
    Old 08-19-2005, 02:24 AM   #3
    asherms1
    Junior Member
    (male)
     
    asherms1's Avatar
     
    Join Date: Mar 2005
    Posts: 20
    asherms1 HB User
    Re: How Long, Oh Lord?

    Thank you for responding, Tinuviel. Yes, I am within 15 miles of Hopkins. I am corresponding with a member of the National Capital Lyme Disease Association, and also attend a supprt group in Mt Airy, MD. I was tested for coinfections by Bowen and Quest (negative), but then again I only turned serum positive for Lyme in early July after several months of treatment. Dr Singelton tells me that the Rocephin will attack some of the co-infections.

     
    Old 08-19-2005, 05:04 AM   #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: How Long, Oh Lord?

    Hi asherms1. Will you be on the IV longer than one month? Often, long-term IV treatment is needed. It can take time to recover from Lyme disease. I know it is hard to be patient.

    It is good that you do not have the co-infections. Are you on orals with the Rocephin? From what I understand, Rocephin will not treat Ehrlichiosis or Babesiosis. I believe Doxy is used to treat Ehrlichiosis and Babesiosis needs to be treated with an anti-malarial/antibiotic combo (often Mepron with Zithromax). It is good that you do not have the co-infections.

    Dr. Singleton comes highly recommended so you should be in good hands. Hang in there okay?

     
    Old 08-19-2005, 06:07 AM   #5
    asherms1
    Junior Member
    (male)
     
    asherms1's Avatar
     
    Join Date: Mar 2005
    Posts: 20
    asherms1 HB User
    Re: How Long, Oh Lord?

    Thank you Ticker,

    Dr. Singelton, my PCP, and Aetna (I guess) will decide at the end of August whether I remain on the IV. I took Ketek with the Rocephin for 3 days, but the docs stopped it after I had arrhythmias. (Macrolide abx like Biaxin and Ketek can contribute to them in certain cases.)

    I had an encouraging, but sobering, conversation with a friend who is 29 (19 years younger than me) that was on an IV for 9 months, and orals for 18 months before he was well enough to work. So I am trying to adjust my mindset for a long, tough, road. I will try to become a patient patient.

     
    Old 08-19-2005, 10:47 AM   #6
    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: How Long, Oh Lord?

    Hi asherms. Patience is very hard to learn when dealing with this disease. The best news is that you know what is wrong and you are getting the treatment you need from a knowledgeable doctor. It is just a matter of time and you will be better

     
    Old 08-19-2005, 12:42 PM   #7
    TINUVIEL
    Senior Veteran
    (female)
     
    TINUVIEL's Avatar
     
    Join Date: Feb 2005
    Location: Delmarva area
    Posts: 722
    TINUVIEL HB User
    Re: How Long, Oh Lord?

    Hi asherms1,

    Glad to hear you are aware of NATCAP. It is a great organization with a lot of helpful and knowledgable people. Plus it's just a very supportive group.

    You've also got a truly outstanding doctor, so you are in very good hands. If getting meds paid for becomes an issue ask around with some folks at NATCAP, they are great for resources and suggestions.

    Indeed, the recovery from Lyme can be a long tough road. Just wondering, did you have any co-infection symptoms? You can test negative for co-infections, but like the Lyme test this is not always conclusive. Of course though I'm sure your doctor knows this.

    There are some things I've done that help such as herbal medicine, acupuncture, etc. but what really helps me the most is doing everything possible to identify and eliminate unnecessary and non-productive stressors in my life. This has included a number of people!

    Keeping a detailed journal/chart of your symptoms helps track progress because with all the ups and downs that are part of the process it can be hard to gauge sometimes. It can also help shorten the "learning curve" as far as identifying stressors. Like if you look at your journal and suddenly realize that your symptoms always seem to flare after you spend time with a certain person, that is a red flag worth looking into.

     
    Old 08-20-2005, 07:17 AM   #8
    asherms1
    Junior Member
    (male)
     
    asherms1's Avatar
     
    Join Date: Mar 2005
    Posts: 20
    asherms1 HB User
    Re: How Long, Oh Lord?

    The last time I saw Dr. S, he said some of my symptoms might resemble one of the coinfections (Erlichosis I think), but that the Rocephin would take care of it if it were present.

    Dr. S requires a journal. I find this incredibly boring to do, but I am trying to keep it in good order.

    Regarding eliminating stressors.... I have changed my job so that I no longer am the single person in charge of roposals. This has helped a great deal.

    Regarding paying for meds: I have enough liquidity to pay for a few months of IV, although I would prefer it to be covered by Aetna. I find that the IV is a lost easier to tolerate than the orals, and I really feel that I have made some progress. I think the huge herx I had in the first week (I am now a believer) is indicative of this. I had arrythmias so bad I was hospitalized for an electrophysiology study at Hopkins. (I was able to record them on an implantable loop recorder that they fitted me with.) This is where they run a catheter from your groin to your heart, move it through the chambers, and try to shock it into having another arrythmia. They could produce none. The Hopkins cardiologist is now pretty much a believer that it is all Lyme related. A friend told me he had exactly the same experience when he started his IV's.

    Sorry for going on at length.

    Last edited by asherms1; 08-20-2005 at 07:26 AM.

     
    Old 08-21-2005, 01:00 AM   #9
    TINUVIEL
    Senior Veteran
    (female)
     
    TINUVIEL's Avatar
     
    Join Date: Feb 2005
    Location: Delmarva area
    Posts: 722
    TINUVIEL HB User
    Re: How Long, Oh Lord?

    Asherms,

    Just wondering if you'd ever had arryhthmias before going on i.v. The reason I ask is that I've had some pretty major episodes without i.v., and so I wonder if a prior history of arrythmia puts you at greater risk of having that reaction to i.v. If so that might be something I'm going to have to watch for if I ever go on i.v. treatment.

     
    Old 08-22-2005, 08:26 AM   #10
    asherms1
    Junior Member
    (male)
     
    asherms1's Avatar
     
    Join Date: Mar 2005
    Posts: 20
    asherms1 HB User
    Re: How Long, Oh Lord?

    Yes, I have had them since the Lyme symptoms began in January of '05. They were pretty much clusters of preventricular contractions at that point. Then in July I had two instances of what was probably ventricular tachycardia in which I almost fainted. The second, third, and fourth day of the IV these became much, much more frequent (I was on a monitor at Hopkins). Now that I am in the 3rd week they are virtually gone. I am on a beta blocker as well so it may be partially responsible.

    My thinking is that since the drug concentrations on IV are much higher in tissues and blood, any herxheimer reactions might be greatly intensified.

     
    Old 08-22-2005, 05:29 PM   #11
    cjFTWORTH
    Senior Veteran
    (female)
     
    cjFTWORTH's Avatar
     
    Join Date: Nov 2004
    Location: Los Angeles, CA
    Posts: 1,221
    cjFTWORTH HB User
    Re: How Long, Oh Lord?

    Hey asherms1 & TINUVIEL,
    I'm cutting/pasting yall's talk for cardiologist... sorry you've both had problems. I've only had slight blips until last month and irregularities have been pretty bad. Only on orals and also having some problems with thyroid.

    I'm so gun shy with docs at this point that I'm concerned cardio will not consider lyme factor ... were both of your docs real open to how this played a part in heart irregularities?? Did Singleton work with your cardiologist? How about you TINUVIEL? did you have to go to a cardiologist? did you have a llmd working with one or were you on your own??

    I've been having skips and also where the beat starts over... what i call an extra beat, as well as my heart going to fast when i do as much as stand up... very easily over exerted, type feeling, short of breath, and now have chest discomfort much of time, and wheezing that comes and goes throughout day, all symptoms worse at night. SUCKS... actually took a walk this morning and all was fine but then later today went to PO and felt SICK after 3 minutes of standing in line... not sure what heart was doing but felt terrible in chest and just felt wiped out... so want my life back...

    no insurance to boot... i have appt with a llmd in missouri, charles crist who is very well respected as well as a woman right here in ft. worth that another poster, dallasmommy has been seeing and is having success with. she is an ID doc... can NOT decide what i am to do... still have 5 weeks before appt.s come up... i made appt. with ID doc before heart stuff started and then husband encouraged me to go w/ crist... so i made call but keep hearing very good things about ft. worth doc as well...
    i see cardiologist in 2 weeks.

    asherms1, do you have any negative reaction/response to beta blocker???

     
    Closed Thread

    Related Topics
    Thread Thread Starter Board Replies Last Post
    Bipolar, is this a prison? (long post) oldrocker Bipolar Disorder 1 04-16-2007 08:52 AM
    Long term sleep meds? Lunesta problems Bilbo Sleep Disorders 9 07-22-2005 11:50 AM
    Letter to people with chronic pain *Please Read* *Long* dancergirl587 Lyme Disease 5 11-14-2004 10:47 PM
    The misinformation surrounding Alzheimer's Disease: (Long) gizmolove Alzheimer's Disease & Dementia 5 01-29-2003 11:02 AM




    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 08:53 PM.





    © 2020 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!