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    Old 07-20-2009, 12:31 PM   #1
    hopefulgirl1
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    losing my mind - lyme, babesia or bart??? HELP!

    Hello everyone,

    I'm just going to give you al a brief overview of what's goin on with me. Early january i started having disturbing visual things happen to me and i bounced from doctor to doctor, specialist to specialist to figure out what was happening with me. Nothing everyone told me it was nothing. My eye specialist actually got mad at me for crying in his office and said it's all psycho sematic and i should maybe consider anti anxiety meds.

    Finally come february a family member that has dealt with lyme thought i should get tested through igenex, i did, and it came back positive. I have suffered from joint pains for years but told it was juvenile arthritis. My neurological symptoms came as of this year and included:

    *memory loss
    * sensitivity to light
    *flashes in my eyes
    *after images of things that didn't even have light reflecting on it
    *I would haze things out
    * i would get almost like fluorescent dashes over my vision when i look at something stark white or a blue sky.
    * i would have numbness and tingling in my head, arms, legs etc.
    * i would get almost like a lava lamp in my eyelids when i would try to go to sleep.
    * lightning images all across my lower eyes and upper eyes

    My family doctor was willing to perscribe but wasn't familiar with the illness. That is the best I could do as there are no doctors even close to me that deal with lyme patients. Anyways i was started on a course of biaxin and tinidazole. I herxed after my third pill and felt like i was hit by a bus. I would occassionaly sweat and then feel very cold. My legs were sore a lot of time. After 2 1/2 months i felt as if my joint etc were getting better but neurologically i wasn't seeing any improvement so we decided to change me onto ceftin and try levaquin with it to treat bartonella with the lyme. I didn't doso well with the levaquin it wasn't agreeing with me. So i stopped the levaquin and went on to take the ceftin and tinidiazole. The whole time i was on ceftin about 4 weeks i would have racing heart, blood pressure would drop and then go up just felt off when i was on it and still not sure if it was herx reaction or maybe an allergic reaction. (but i had about 4 days where i felt fantastic whileon this)

    After i was put back on biaxin and tinidazole combo but they lowered my dose to see if i could handle it better. On came my next problem YEAST!!! my throat felt completely coated and i was having a hard time swallowing so was taken off antibiotics for 10 days. I have to say on the 10 days i was off i started to have static in my vision more pins and needles.....i found it so bizarre that i could feel something so quick after stopping. ( i had only been on 3 full months of antibiotics and 1.5 months of pulsing at lower dose at this point.

    The other day i started ceftin again we thought we would give it a try and i've stopped everything else to see if i can get it into my system properly without reaction. I already don't think it's agreeing with me. I'm so frightened about my eyes and while some symptoms have lifetd i have now this new symptom which is static vision...and more of the fluorescent dashes when i look at the light. Could all this neurological stuff be bart and i'm being undertreated? What do you all think it is just lyme or a coinfection and have any of you had anything similar? On top of all this i just feel more depressed lately and grumpy i cry at the drop of a pin when someone says something to me and i'm so moody, this isn't the person i am. I just want to get this over with and have my life back i know it's a long journey. I accept that part. But i can't seem to get on a combo of meds that work for me so I can go ahead and get on my path to feeling somewhat better. I don't drive i don't do anything and i'm a newlywed. In january before i got sick we were actually considering having children this year. It's hard it's really really hard to keep my life to gether at this point. I just want some help i have no clue what to do i'm treating myself and i'm running out of energy completely...sometimes i feel giving up is my only solution.

     
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    Old 07-22-2009, 09:57 PM   #2
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Hang in there,
    I'm suffering from Lyme and Babesia, and have gone undiagnosed for a long period of time and also have suffered some the neurological effects and physical effects you describe.

    I kept going back to my family doc complaining of fatigue and he put me off for about a year and a half saying, "you have a little cold" "maybe its a little depression" "maybe a little viral thing", three visits later I'm like just test me for everything. Duh doc, what a quack. I should take some blame too, but I have always been healthy my whole life and trusted him. Anyway, what I'm getting at is that my problem became chronic lyme and a persistant infection because it was allowed to fester so long resulting in:

    fatigue
    memory loss
    sensitivity to light, so bad I went to the eye doctor, (only to be tested for 20/15 vision)
    poor vision while driving (something to due with light and glare)
    brain fog
    numbness, pins and needles in hands while I sleep
    dizziness

    and then after treatment my whole body went sore, I herxed bad and was moving like a real old man in the mornings, sore from head to toe.
    my knees, ankles and back are still sore to this day.

    Been taking meds for about three years and I rememeber early on feeling alot better right from the start then getting worse (herx) then returning to a state where I felt better, then stopping meds only to have symptoms return, restarting meds and feeling better then stopping for a longer period of time. My most recent stretch off meds was about five to six months and I thought I won until a couple of weeks ago when the fatigue, sore knees back and ankles returned along with the brain fog. I'm now considering other options, like herbals and a diet change, maybe a doctor change, but hoping to stay on the meds and feel better soon.

    I hope some of this helps you, good luck.

    Last edited by Stumbling BLOCK; 07-22-2009 at 10:00 PM.

     
    Old 08-19-2009, 04:39 PM   #3
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    I have similar problem. My doctor isn't a LLMD and he doesn't believe my symptoms with joints and other and wants to send me to a Psychiatrist. I was only treated for Lyme with Dox for 12 days and when it was stopped , I had joint pains and burning skin pop up all over. I don't think I'm crazy at all. Has anyone had this or agrees these are symptoms they have or had with Lyme?

     
    Old 08-19-2009, 04:40 PM   #4
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    I have similar problem. My doctor isn't a LLMD and he doesn't believe my symptoms with joints and other and wants to send me to a Psychiatrist. I was only treated for Lyme with Dox for 12 days and when it was stopped , I had joint pains and burning skin pop up all over. I don't think I'm crazy at all. Has anyone had this or agrees these are symptoms they have or had with Lyme?

    Also, does anyone know any LLMDs on Long Island (or secondly NY City) ?

     
    Old 08-19-2009, 06:10 PM   #5
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Hi BillyBoob, Welcome to the board.

    I take it you were being treated for Lyme for 12 days???

    If that is true then that is definatley not long enough.

    I was sent to the shrink plenty of times, put on antidepressants....and I had lyme.

    I was going nuts from doctors telling me I didn't know about my mind/body.

    You definatley need to see a doctor that will treat you for lyme. "If" that is what you have. And you need to be tested for co-infections.

    Jodie

     
    Old 09-02-2009, 08:39 PM   #6
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Quote:
    Originally Posted by hopefulgirl1 View Post
    Hello everyone,

    I'm just going to give you al a brief overview of what's goin on with me. Early january i started having disturbing visual things happen to me and i bounced from doctor to doctor, specialist to specialist to figure out what was happening with me. Nothing everyone told me it was nothing. My eye specialist actually got mad at me for crying in his office and said it's all psycho sematic and i should maybe consider anti anxiety meds.

    Finally come february a family member that has dealt with lyme thought i should get tested through igenex, i did, and it came back positive. I have suffered from joint pains for years but told it was juvenile arthritis. My neurological symptoms came as of this year and included:

    *memory loss
    * sensitivity to light
    *flashes in my eyes
    *after images of things that didn't even have light reflecting on it
    *I would haze things out
    * i would get almost like fluorescent dashes over my vision when i look at something stark white or a blue sky.
    * i would have numbness and tingling in my head, arms, legs etc.
    * i would get almost like a lava lamp in my eyelids when i would try to go to sleep.
    * lightning images all across my lower eyes and upper eyes

    My family doctor was willing to perscribe but wasn't familiar with the illness. That is the best I could do as there are no doctors even close to me that deal with lyme patients. Anyways i was started on a course of biaxin and tinidazole. I herxed after my third pill and felt like i was hit by a bus. I would occassionaly sweat and then feel very cold. My legs were sore a lot of time. After 2 1/2 months i felt as if my joint etc were getting better but neurologically i wasn't seeing any improvement so we decided to change me onto ceftin and try levaquin with it to treat bartonella with the lyme. I didn't doso well with the levaquin it wasn't agreeing with me. So i stopped the levaquin and went on to take the ceftin and tinidiazole. The whole time i was on ceftin about 4 weeks i would have racing heart, blood pressure would drop and then go up just felt off when i was on it and still not sure if it was herx reaction or maybe an allergic reaction. (but i had about 4 days where i felt fantastic whileon this)

    After i was put back on biaxin and tinidazole combo but they lowered my dose to see if i could handle it better. On came my next problem YEAST!!! my throat felt completely coated and i was having a hard time swallowing so was taken off antibiotics for 10 days. I have to say on the 10 days i was off i started to have static in my vision more pins and needles.....i found it so bizarre that i could feel something so quick after stopping. ( i had only been on 3 full months of antibiotics and 1.5 months of pulsing at lower dose at this point.

    The other day i started ceftin again we thought we would give it a try and i've stopped everything else to see if i can get it into my system properly without reaction. I already don't think it's agreeing with me. I'm so frightened about my eyes and while some symptoms have lifetd i have now this new symptom which is static vision...and more of the fluorescent dashes when i look at the light. Could all this neurological stuff be bart and i'm being undertreated? What do you all think it is just lyme or a coinfection and have any of you had anything similar? On top of all this i just feel more depressed lately and grumpy i cry at the drop of a pin when someone says something to me and i'm so moody, this isn't the person i am. I just want to get this over with and have my life back i know it's a long journey. I accept that part. But i can't seem to get on a combo of meds that work for me so I can go ahead and get on my path to feeling somewhat better. I don't drive i don't do anything and i'm a newlywed. In january before i got sick we were actually considering having children this year. It's hard it's really really hard to keep my life to gether at this point. I just want some help i have no clue what to do i'm treating myself and i'm running out of energy completely...sometimes i feel giving up is my only solution.
    dear Hopefulgirl, dont ever give up. You need to find a lyme literate MD (LLMD), check the ILADS site to see if there is one near you. My daughter is suffering with this too, and I tell her the same thing when she gets depressed. SHe was also mis-diagnosed for almost 5 years! It just got really bad about 9 months ago. We've had no luck finding meds that work yet, her last resort is IV Rocephin, but I want to try some nutritional support first. I've been doing a lot of research into this nasty illness on my own, and it helps somewhat. Apparently California has a really helpful Lyme info group, can't recall the exact name, but they put out a lot of good info on the disease.I send my warmest and sincerest wishes for recovery. If i find anything good I'll try to post it for everyone. best of luck to you

     
    Old 09-07-2009, 11:37 AM   #7
    hopefulgirl1
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Hi everyone,

    I just wanted to thank you all for your responses...if it wasn't for the boards i wouldn't have the wealth of information i have today.

    I want to update you on what's going on with me since we've last spoken i've been diagnosed with 3 co-infections:

    rocky mountain spotted fever
    typhus fever
    and erlichiosis

    In my test results it states that i had been infected at a given time but being on antibiotics for this amount of time either set it back or put it in remission so now i'm on doxy just in case. I was pretty much in shock when i got my results and did my little routine of crying. I started doxy a 2 weeks ago going from 200mg/day for one week now onto 300mg/day.

    Since starting doxy i had a few days of joint pains but the one thing that has me beside myself is a lot of my eye symptoms that subsided while on biaxin/tinidazole are back. I can't get a straight answer whether it's a herx or what but i'm completely terrified. I'm not sure whether to ride it out or not. I know the doxy addresses RMSF erlichiosis and typhus but for some reason i sit here and quesiton "am i sliding back down?" My eyes were the one symptom that scared the living daylights out of me.

    I had a big cry today haven't been sleeping much and resort to a night light to make sure i can see at night when i do wake up. I'm stressed beyond belief. I'm seeing a LLMD in seattle andhe's reccomending i start rifampin for a potential bartonella infection in a week.

    I never knew that i would be embarking on such a rollercoaster ride with this disease. I hope you are all doing wonderful and in great spirits. Hopefully my next update will be a better one

    Bye for now

     
    Old 09-08-2009, 06:16 AM   #8
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Dear Hopefulgirl,
    so sorry to hear about all your troubles. I'll pray that you'll be able to resolve most of them, especially the eye stuff soon. I always want to cry these days for my daughter too. I would take all her pain if I could.
    Look forward to a more favorable report next time.Lots of hugs to you, and a virtual shoulder to cry on. Hang in there, don't ever give up. We're all pulling for you!

     
    Old 09-08-2009, 07:58 AM   #9
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    I think you will get another herx from the doxy and I think you should stay with it. I was off all antibiotics for my longest strech of six months in three years of dealing with this stuff, started another 30 days and had a herx after about one week of meds.

    It definately makes you second guess everything. good luck

     
    Old 09-08-2009, 06:11 PM   #10
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Thanks.
    I was recently treated for Lyme for 12 days. Several idiotic infectious doctors say that's plenty and they were the ones that took me off Dox prematurely. Whatever I have, Dox reduced the symptoms significantly, however they came back after stopping plus I had all my joints, shins and forearms flare up in pain besides the burning skin sensations again (from when I had Lyme 1 1/2 yrs ago).

    I have had similar responses from doctors about being crazy. I'll be seeing an LLMD this Friday and I'm looking to get more tests and co-infection tests.

    1 1/2 years ago I had Lyme (Western Blot positive almost everywhere). Don't recall how long I was on Dox then but when I was done I had headache & fatigue plus burning skin for a few months after and I suspect I never got rid of it.

    Last edited by billyboob; 09-08-2009 at 06:12 PM.

     
    Old 09-08-2009, 06:13 PM   #11
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    Quote:
    Originally Posted by billyboob View Post
    Thanks.
    I was recently treated for Lyme for 12 days. Several idiotic infectious doctors say that's plenty and they were the ones that took me off Dox prematurely. Whatever I have, Dox reduced the symptoms significantly, however they came back after stopping plus I had all my joints, shins and forearms flare up in pain besides the burning skin sensations again (from when I had Lyme 1 1/2 yrs ago).

    I have had similar responses from doctors about being crazy. I'll be seeing an LLMD this Friday and I'm looking to get more tests and co-infection tests.

    1 1/2 years ago I had Lyme (Western Blot positive almost everywhere). Don't recall how long I was on Dox then but when I was done I had headache & fatigue plus burning skin for a few months after and I suspect I never got rid of it.

     
    Old 12-12-2010, 01:42 AM   #12
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    Re: losing my mind - lyme, babesia or bart??? HELP!

    I am currently in a struggle against ol Bart myself. I'm 23 years old and have been diagnosed with JRA(juvenile rheumatoid arthritis) since i was 8 only to discover the lyme about 2 1/2 years ago. Most of my symptoms are those associated with arthritis like the pain and inflammation of the joints and then the deformities that come from years of that. But i do get eye aches sometimes which i find strange but its usually when my inflammation level is high. What i have learned about lyme though is it's ability to act different in everybody and there is no such thing as a typical lyme patient. Thats why its so important to keep searching and learn as much as you can. I would encourage you to find a naturopathic doctor who treats lyme to help with and if nothing else give a second opinion in your treatment. Not until I started seeing a Naturopathic doctor did i ever feel like I had some sort of an answer of what was wrong with me or how i could get well. I am currently on an herbal treatment called A-BART which is specifically formulated against the bartonella strain. Not to say that the "natural" approach has been easy or pain free by any means but i feel better overall. I'm off all but one prescription and it's an anti-inflammatory that agrees with my body. I will pray for you and that your healing path is as obstacle free as possible. Keep faith and know that God is with you always. Please feel free to ask me anything if you'd like. I'm no doctor but maybe I can offer some encouragement. I hope this finds you well as can be and still a hopeful girl. Its a beautiful day

     
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