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    Old 01-10-2008, 11:03 AM   #1
    AquaticChic
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    Smile ticker, how are you?

    Hi, ticker! I just want to see how you're doing. You help everyone else, but we rarely hear about you!

     
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    Old 01-10-2008, 02:36 PM   #2
    ticker
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    Re: ticker, how are you?

    Hi AquaticChic, thanks for asking!

    I am hanging in. I am still being treated for Lyme and a thyroid disorder. I am definitely better than when I was first diagnosed (with five tick-borne illnesses!).

    How are you?

     
    Old 01-11-2008, 09:55 AM   #3
    ryebeach
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    Re: ticker, how are you?

    Quote:
    Originally Posted by ticker View Post
    Hi AquaticChic, thanks for asking!

    I am hanging in. I am still being treated for Lyme and a thyroid disorder. I am definitely better than when I was first diagnosed (with five tick-borne illnesses!).

    How are you?
    Wow you have been at it a long time and still have time for all of us .
    Which infections did you have? and how have they treated them .
    Are you on the east coast? I know I always refer to new people I notice on the boards to you since you seem so patient a knowledgable
    Good luck with your progress
    Take care
    Ryebeach

     
    Old 01-11-2008, 08:24 PM   #4
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    Re: ticker, how are you?

    Thanks Ryebeach! I have had Babesiosis, both types of Ehrlichiosis, Mycoplasma, and Lyme.

    I had a severe case of Babesiosis, and had to treat it more than once. I took Mepron and Zithromax. I took Doxy for the stubborn Ehrlichiosis infections. Doctors say when co-infections are present, the symptoms of each infection are more severe. I believe this.

    I live in Tennessee--a state where Lyme "does not exist!"

    How are you?

     
    Old 01-13-2008, 05:03 AM   #5
    ryebeach
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    Re: ticker, how are you?

    Quote:
    Originally Posted by ticker View Post
    Thanks Ryebeach! I have had Babesiosis, both types of Ehrlichiosis, Mycoplasma, and Lyme.

    I had a severe case of Babesiosis, and had to treat it more than once. I took Mepron and Zithromax. I took Doxy for the stubborn Ehrlichiosis infections. Doctors say when co-infections are present, the symptoms of each infection are more severe. I believe this.

    I live in Tennessee--a state where Lyme "does not exist!"

    How are you?
    Hi Ticker
    I am doing okay . I came down to W Va to visit a friend and we went shopping and I am exausted with ear pain again. I can't seem to take any draft or wind in my right ear .It is certainly a long journey we all have taken . I have had a pretty decent week . The holidays seemed to bring on the symptoms more.
    I have had alot of stress in the past few years dealing with the lyme a nephew that is 28 with a small child living with me and never wanting to leave and not contributing anything to help with me out of work so I just recently had the nerve to say get out and took the brunt from my husband It was not pretty since he is my husbands nephew . He makes really good money and can afford to live on his own.
    So maybe without the extra catering to people and watching a 2 year old almost every day I can finally take the time to rest and heal better . The little girl brings me such joy but I do not have the energy to keep up with all of it .
    I hope the zithro and mepron and levaquin combo will do the trick this time.
    What were your symptoms with all of the co-infections? I also have the bartonella and Ehrlichiosis .
    The neuro stuff is improving but not gone . The nerve pain continues but dr r says when we get the co-infections under control maybe this will subside and he also gave me b12 shots to take to see if we can get me a little more energy .
    I can't believe how much this disease is just ignored and the sad way the doctors just will not even consider the possibility of someone having lyme
    I New Hampshire where I live they did a study on the deer ticks in Rockingham County where I live through the university of nh and found that 50% of the ticks were lyme or co-infections present . Why in the world would the medical community not want to recognize this and help people before they wind up like some of us It makes no sense to make people suffer out of ignorance .
    I just am grateful for people like yourself for giving all the support you have for people like myself that had no other support in the beginning and still now
    Thank you so much for being there when I was in real need
    Ryebeach

     
    Old 01-15-2008, 04:31 AM   #6
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    Re: ticker, how are you?

    Hi Kim
    They changed me from the rochephin to the zithromax because they felt it was no longer effective on the babesis which is the main target to get rid of right now along with the bart Also Mepron is in the same cyst bustiing catagory as malarone originally used for aides patients so they did not develope pnenomia I did speak to a guy in me at a support meeting and he said the malarone was working better for him than the mepron for his co-infections I think they were also babesis and bart
    I hope you are feeling okay today The cold weather really gets to me
    While I have been here I did get to go to the oldest mineral springs hot baths in berkley springs It did make me feel good for the day and back at the aches and pains today but was very relaxing
    I have tried the detox baths and they can relieve some of the pain for short periods of time
    I know about the storm because my husband was complaining about having to snow blow the driveway which is quite long.
    Sad to say I will be returning home to reality tommorow
    Take care and I will post a list of drs in the area
    ryebeach

    Last edited by moderator2; 04-04-2008 at 09:45 AM. Reason: please use the quick reply button instead of clogging the thread with a quote of every single post to which you reply

     
    Old 01-20-2008, 02:12 PM   #7
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    Re: ticker, how are you?

    Hi Kim,
    Did you see any Lyme literate Dr's in NH or Maine before Dr.H?
    I live in So.Maine & have been dealing with Lyme, Bart.,Erch. & Babesia for too long..
    I've been told Dr.H is the one to see.
    Thanks.

    Kitpoint

     
    Old 01-22-2008, 07:37 AM   #8
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    Re: ticker, how are you?

    Kim

    Thanks for the reply. I was interested in what tests you had to determine your adrenal insufficiency. Did you see an endrocrinolgist?
    I had the Adrenal Stress Index test thru Diagnos-Techs. and found my cortisol levels were high at night.
    I also suffer from extreme night sweats. (I was treated for Babesia w/Mepron & Malarone for over 1 yr).

    Thanks.

    kitpoint

     
    Old 01-22-2008, 11:25 AM   #9
    eleven11
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    Re: ticker, how are you?

    my name is kim, also. ive had lyme and possibly two co-infections going on five years now. I go to the university of new hampshire, and i'm looking for a good doctor in the area. it is really depressing going through ******** with doctors who know nothing. i am about to start antibiotics again, after taking a long break. (too long, my body is not well) I am going to start up on tindamax soon, any word on that?
    thanks




    kim

     
    Old 01-22-2008, 10:57 PM   #10
    ryebeach
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    Re: ticker, how are you?

    Quote:
    Originally Posted by kitpoint View Post
    Hi Kim,
    Did you see any Lyme literate Dr's in NH or Maine before Dr.H?
    I live in So.Maine & have been dealing with Lyme, Bart.,Erch. & Babesia for too long..
    I've been told Dr.H is the one to see.
    Thanks.

    Kitpoint
    Hi Kitpoint and kim
    I am Posting a list of doctors for you to consider who are lyme literate not llmd's but treat according to illad's guidelines in the nh me area that I was given by the doctor I was being treated by until his office closed
    leon hecht portsmouth nh
    dr rex carr west lebonon nh
    dr richard horowitz hyde park ny
    dr joseph py amesbury ma
    dr raxlen ny ny
    dr don donta falmouth ma
    I hope I am not breaking any rules for posting these names
    Also there is a doctor in kennebunk Me that I do not know
    his name he is a naturapath i believe
    goo luck to you and kim
    keep uss posted
    take care
    ryebeach

     
    Old 01-23-2008, 07:53 AM   #11
    kitpoint
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    Re: ticker, how are you?

    Ryebeach,

    Thanks so much for the reply and the list.
    I have seen Dr.Don. & see the naturopath in Kennebunk. I just feel I haven't progressed much after 3 plus years of antibiotics. I know everyone responds differently to the treatments.

    Thanks.

    kitpoint

     
    Old 01-23-2008, 12:42 PM   #12
    ryebeach
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    Re: ticker, how are you?

    Quote:
    Originally Posted by kitpoint View Post
    Ryebeach,

    Thanks so much for the reply and the list.
    I have seen Dr.Don. & see the naturopath in Kennebunk. I just feel I haven't progressed much after 3 plus years of antibiotics. I know everyone responds differently to the treatments.

    Thanks.

    kitpoint
    Hi Kitpoint
    I know what you mean I have no idea of the severity of your lyme Everyone is so different
    What type of antibiotics have been on oral or IV My progress has been slow but I have over the past 18 months come back about 60 % from being knocked flat on my butt but still see sutle changes that let me know there is still effectiveness from the treatment
    The Lyme and it's infections have taken a toll on my marriage along with other marital problems I have had to face it just seems like I would love to just fall off the edge of the world sometimes I want to leave but am terrified of dealing with this all alone
    Nothing seems right anymore and I get so angry when I am being treated in such a condesending manner from the spouse It just makes things so much worse but I don't know how to get better and be independant once again I feel so helpless and trapped because of all of this .
    I need his insurance and without it I would be really in a pickle since they have been really good about the IV therapy
    I have never been in such a needy situation and dependant on anyone like I have to now I absolutely hate it

     
    Old 01-30-2008, 12:15 PM   #13
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    Re: ticker, how are you?

    thank you all for the help with doctors. i will be checking around and i will definitely be going to the support group in durham.
    i see a doctor in vermont who is lyme literate. he is all ive got right now. my head has been very cloudy and it is so difficult to concentrate and remember things. i will start walking to do something and then forget what it was i was doing. all the time. it has gotten noticeably worse. i started abx last week so i hope that it is them working. recently as a lay down to go to sleep my arms will start tingling and feel numb. my hands and legs from the knee down give me the most pain at night. i am also setting up for an MRI and EKG soon because i am worried about my brain and heart. my mother, who also has lyme at a more advanced stage, has lesions in her brain and apparently that is not uncommon.
    anyway. thank you all and i wish you luck

     
    Old 01-30-2008, 02:44 PM   #14
    ryebeach
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    Re: ticker, how are you?

    Quote:
    Originally Posted by eleven11 View Post
    thank you all for the help with doctors. i will be checking around and i will definitely be going to the support group in durham.
    i see a doctor in vermont who is lyme literate. he is all ive got right now. my head has been very cloudy and it is so difficult to concentrate and remember things. i will start walking to do something and then forget what it was i was doing. all the time. it has gotten noticeably worse. i started abx last week so i hope that it is them working. recently as a lay down to go to sleep my arms will start tingling and feel numb. my hands and legs from the knee down give me the most pain at night. i am also setting up for an MRI and EKG soon because i am worried about my brain and heart. my mother, who also has lyme at a more advanced stage, has lesions in her brain and apparently that is not uncommon.
    anyway. thank you all and i wish you luck
    Hi 11
    I also have the nerve pain from mostly my knees down The doctor in nyc I go said this is most likely from my co-infections babesis and bartenella He has now added Zithromax and levaquin to my mepron that I am also taking to try to get the antibiotics to the nerve endings which sometimes alot of them alone do not reach this area. The Rocephin took care of the brain and most of the cognitive stuff but stopped being effective after 12 months of IV He did say it is bound to probably make me feel worse again before I get better I feel at times I am a walking drugstore when before all of this all I ever did was take an occaional advil
    The Iv rocephin remarkable improved my brain fog I am still a little forgetful but I am walking without a gait and my heel which was intolerable to walk on is just doing so well . The process can seem so long but you will make progress if you are determined to . My pharmacist said a couple months ago he was so pleasantly surprized to have seen how far I had come over the last year from when I had my stroke last year . He said to me he wondered a year ago how I even made it to pick up my medicine .
    He was my saving grace since he told me about igenex after my other lyme test came back negative so I reallly owe my progress to him and thank you and others for your undeniable support and listening me to air my stress and problems thanks ticker and kpt12 too.
    ryebeach

     
    Old 02-11-2008, 01:23 PM   #15
    eleven11
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    Re: ticker, how are you?

    ryebeach

    Just found out from a blood test last week that my blood is 'loaded' w. Bartonella. Now on Zithromax and Rifampin. Scared but relieved to know what I'm targeting now. I just started Zithromax last week. Noticed one day of extremely bad leg pain, worse than usual, but other than that just some stomach aches. Not sure what to expect, and when to expect it (should the worst be week 4?) I'm worried that oral antibiotics are just going to ruin my insides and im wondering if i should be on IV.
    Going to the support group tomorrow, I'm excited to meet people who understand.


    11

     
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