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



Lyme Disease Message Board

  • Can someone please help me? I don't know where to turn.

  • Post New Thread   Reply Reply
    Thread Tools Search this Thread
    Old 05-07-2019, 11:00 AM   #1
    ligpit36
    (male)
     
    Join Date: May 2019
    Posts: 1
    ligpit36 HB User
    Can someone please help me? I don't know where to turn.

    ok. Back in June or july 2018, I went to the doctor because I felt a hot pins and needle sensation in my legs. i also felt like my legs were being waited down when I walked, and It was somewhat difficult to get up, after sitting down. I got my blood tested and came back positive for lyme. The bands i got were; IG 58, IG 93, IG18, IG28, IG39, and IG41. I was put on the normal doxycycline course.

    During that time, I have mild symptoms, such as; tingling in legs, slight muscle fatigue, migrating pains in different body parts, low grade headaches, and very rarely, knee pain. All of these symptoms were mild. About a 2 or 3 on a ten point scale. However, they never went away with anti-biotics.

    I then went to see an LLMD. He put me on two separate anti-biotics. Still no change. Same mild symptoms. I stopped seeing him because he actually had the nerve to get angry with me for not getting better. he told me there was nothing more he could do.

    Then I went to another LLMD. He charged rediculous amounts for supplements that he said would work. They didn't. Same mild 2-3 level symptoms.

    Finally, desperate, i went to a chiropractor. he put me on some kind of immune boosting supplement. That's it! No tests no nothing. Same mild symptoms. No change. I went to get tested by a real MD. And found that I was still positive for the exact same IGG bands. There had been no change in a whole year!


    Can someone PLEASE tell me what may be wrong? Why have I not changed in a year, despite anti-biotics, diet changes, immune boosters etc? Why are my symptoms so mild? Some days, i even feel almost completely normal. Why? Shouldn't I be bed ridden and in constant pain like everyone else with this disorder? Is that my future? Is this going to get worse? Do I have a treatment resistant form?


    Someone PLEASE tell me? Just give me anything! Anything! Fear rules my life now, because I don't know what's going on and all the "experts" can't tell me.

     
    Reply With Quote
    The following user gives a hug of support to ligpit36:
    tess201 (05-08-2019)
    Sponsors Lightbulb
       
    Old 05-07-2019, 05:24 PM   #2
    MSNik
    Senior Veteran
    (female)
     
    Join Date: Sep 2006
    Location: USA
    Posts: 12,738
    MSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB UserMSNik HB User
    Re: Can someone please help me? I don't know where to turn.

    Have you considered seeing either a neurologist or an infectious disease doctor? Both would have extensive knowledge about the IGG bands. Some neurological diseases also present with the same inflammation; and an infectious disease doctor can help you narrow down what it IS or ISN'T.

    I know you have been through the ringer with doctors; but I really do think ID (infectious disease) or Neuro is where you need to be...I have similar symptoms and have a neurological disorder; interestingly enough it was an infectious disease doctor who steered me there.

    Hope you feel better!~
    __________________
    RRMS- dx 05

     
    Reply With Quote
    Old 05-08-2019, 05:54 AM   #3
    tess201
    Senior Veteran
    (female)
     
    Join Date: Aug 2013
    Location: NYC
    Posts: 999
    tess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB Usertess201 HB User
    Re: Can someone please help me? I don't know where to turn.

    LD does not follow a natural course. Much depends on how soon you were treated after being infected. Detoxing is vital to management of lyme symptoms. I would strongly suggest you do research on this as there are many things that you can do to offset some of the symptoms you are experiencing. I would also suggest that you stay with lyme specialists (LLMD's). Other's who claim to be able to treat lyme usually do not have the knowledge or experience to do so.

    That your symptoms are mild is actually a benefit as this is not the case for most "lymies". I understand your frustration, but LD is not like other diseases. Those of us with late-stage lyme (which I hope you never develop) often require lifetime management. That you still have symptoms, even though "mild", means that you still need treatment of some kind. Those symptoms, if not addressed, could become more severe if the spirochetes get another foothold in your system.

    The greatest thing you can do for yourself is to become knowledgeable about this disease. Look for Lyme support groups as well as talking with others with LD will help you to put things into perspective. This can also be useful in finding honor roll LLMDs in your area. I wish you all the best with this.

    Tess

     
    Reply With Quote
    Old 05-08-2019, 07:22 AM   #4
    yayagirl
    Senior Veteran
    (female)
     
    Join Date: Jun 2010
    Location: USA
    Posts: 2,321
    yayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB Useryayagirl HB User
    Re: Can someone please help me? I don't know where to turn.

    Dear ligpit,

    Indeed one does need a well-practiced Lyme expert to handle the case. Lyme's is just not a straight forward or well known disease. It seems that so many try to treat it without really understanding it. Monitoring needs to never stop, but the disease usually can be managed if your doctor knows what he is doing. From what I have heard few doctors do know what to do.

    A family member has Lyme's and went through that confusing and disheartening time, and is coping well now but had to learn to stay with a Lyme literate specialist and to get plenty of rest. Life could not go on as it had before. There is no known complete cure so one has to stay on top of the symptoms by getting enough rest, eating right, avoiding toxins that the rest of us might tolerate without getting ill, and most importantly having a doctor that knows the signs and what to do about them. Those doctors are in short supply, but keep searching.

    You might make phone calls to ask about experience with Lyme's before you bother making an appointment. Don't pass by Naturopaths in your search. Sometimes one did due diligence in their research. Read all you can about Lyme's. What you need to do for yourself really matters.
    __________________
    ~ YaYa ~

     
    Reply With Quote
    Reply Reply




    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 01:56 PM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!