losing my mind - lyme, bart or babesia??? HELP!

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hopefulgrl
New Member


Date Joined May 2009
Total Posts : 10
   Posted 7/20/2009 12:29 PM (GMT -6)   
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?  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.

hopefulgrl
New Member


Date Joined May 2009
Total Posts : 10
   Posted 7/20/2009 1:01 PM (GMT -6)   
I don't have a blur when looking left to right. But i do get the leg thing where they just feel tired and sometimes heavy. I do have concentration problems. Everytime i take a shower I can't for the life of me remember which handle is hot and which is cold. :S  As well i find myself more depressed lately i cry quite easily i think my husband is going to lose it soon i cry on a pin drop.  Don't know if that is just from all the stress i have been going through or if it's the lyme or some other crazy con infection.  I'm so confused about if i have a coinfection or not and how i should treat myself.
 
Oh and the static in my vision somehow gets worse when i'm laying down at night or just wake up in the morning.

Post Edited (hopefulgrl) : 7/20/2009 1:06:03 PM (GMT-6)


1bitten2xshy
Veteran Member


Date Joined Jun 2007
Total Posts : 849
   Posted 7/20/2009 1:07 PM (GMT -6)   
Has your Dr. considered putting you on IV Rocephin? Is there anyway you can get to see a LLMD? That is what you really need. While you have alot more than most, by a GP willing to try and treat, they just are not real familiar with this disease and all it entails.

There are many different abx combos out there to try as well as some people have had good success going the natural alternative route.
Co-Moderator Lyme Disease Forum
Life is not about waiting for the storms to pass...it's about learning how to dance in the rain


hopefulgrl
New Member


Date Joined May 2009
Total Posts : 10
   Posted 7/20/2009 1:26 PM (GMT -6)   
I was seeing a LLMD (only once) but it was to costly for me and this is the only route i can take right now :( i'm just trying to figure out if i may have a coinfection

hopefulgrl
New Member


Date Joined May 2009
Total Posts : 10
   Posted 7/20/2009 1:40 PM (GMT -6)   
Lymekiller, were you diagnosed with coinfections and has anything helped your visual problems?

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 7/20/2009 1:57 PM (GMT -6)   
I am sorry that you are having such problems. I know that Lyme itself can cause multiple eye problems. I was back at my Opthalmologist this week. My main eye symptoms have been burning, constant bloodshot eyes and dryness. He told me that they just hospitalized a woman last week for Optical Neuritis caused by Lyme. He told me to consider myself lucky that I only have the issues I do. Even though my left eye has worsened.

I cannot say whether or not you have co-infections, I do not know enough about it. I know you say it is hard, but if you could see your LLMD, that is the best route.

Hopefully someone else has some answers to add.

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 7/20/2009 2:02 PM (GMT -6)   
I think my vision problems were different. I had Optic Nueritus 4 times in less than a year. It was all Nuerological I had lesions in my eye nerves and was Diagnosed with MS.
 
I also tested positive for Lyme started Doxy and my eye problems cleared up my nerves now look great. I still had alot of other Nuero problems and the only thing that touched them was IV Rocephin for 90 days.
 
I went from having an MRI with over 10 lesions on my brain and spine to having a clear MRI. My MS Drs couldn't believe it.
 
I was better for awhile we got pregnant I stayed on low dose antibiotics the whole pregnancey to help prevent any leftover Lyme transmitting to her. She was born healthy tested negative at Birth for Lyme. She turns One this week and is healthy and happy so far shows no signs for Lyme. We are blessed.
 
I stayed on my antibiotics for awhile and then with out talking to any of my LLMDs I stopped one day. A couple months later it is all back.
 
I think I had Lyme for too long undiagnosed, they pumped me full of steroids for MS for a year. I think that turned my Lyme into super Lyme.
 
I feel I will get better again and I will maintain with herbs and pulsing antibiotics for life.
 
Lyme Disease can turn into such a battle sometimes, make sure you fight for yourself. Get a Dr who believes in Lyme Disease as a serious illness.
 
I am currently treating Babesia with Mepron and Arythrymicin. I have tested negetavie for Babs and Bart but I feel we need to treat them too.
 
I am flying 3000 miles to Conneticut next week to see an LLMD and hopefully get IV antibiotics again.
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


hopefulgrl
New Member


Date Joined May 2009
Total Posts : 10
   Posted 7/20/2009 3:40 PM (GMT -6)   
the ceftin helped with the brain fog. I was told it is a medication that penetrates the brain blood barrier better than other antibiotics. But my body just cant seem to handle it. Other than that i was told keytek was great for neuro lyme, but it is very heavy duty from what i have read and can cause liver damage.

I'm just leaning toward treating bartonella because it causes so many probelms to the central nervouse system. But wihtout a proper llmd i'm just guessing adn thats probably not a good thing :(

nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 7/21/2009 10:27 AM (GMT -6)   
I am sorry your meds are not working for you and I hope you find something soon that helps, which you can tolerate. I used Ketek for two months and it helped a lot. Then I was diagnosed with bartonella and put on levaquin. It knocked down the bart in just a few weeks but left me with tendonitis. I could not use an abx after that because I seemed to develop a sensitivity to all chemicals. Luckily I was feeling well enough to just use herbs which do not cause so much damage. However you cannot get well using the low doses of herbs commonly recommended. You have to take about 6 times the amount suggested and that is very expensive. It has taken months to get over my yeast infection caused from the abx so you want to be very careful not to allow that to get out of control.

My neurological problem was helped a lot when I started treatment for bartonella. I know what you mean about forgetting common facts like hot versus cold. Once I could not remember my own son's name for a couple of minutes! I walked right past people I knew not recognizing them. At the time I remember thinking that they looked familiar, even looked like the the person they were but it didn't click that was really them. But I am much better now.

As for eyes, especially dry eyes, use hyaluronic acid. It is basically collagen which the bacteria live in and devour. A friend told me about it before I was diagnosed with lyme. I had been to the doctor 4 times because my eyes were diving me crazy. I could not tolerate light, wore sun glasses inside the house and felt like my eyes were full of sand. They were both blood shot and people thought I had pink eye. I have no trouble with them now, but only as long as I take the HA every day. HA is used to replace collegen in the joints such as when you have arthritis. You can find it at any health food store. Be sure to buy the vegetarian version, not chicken sternum or rooster comb.

minerals
Veteran Member


Date Joined Jul 2007
Total Posts : 943
   Posted 7/21/2009 10:41 AM (GMT -6)   
Read Burrascano's protocal don't waste time with the wrong treatment or not long enough treatment. You will only get worse.
Blessings
Diagnosed 2003 Lyme, Babesia, Bartonella, Micoplasma,Hashimotos Thyroiditis. Have had since early nineties. [/color]

<FONT color=#0000ff>Outstare The Darkness--The Light Will Come!


hopefulgrl
New Member


Date Joined May 2009
Total Posts : 10
   Posted 7/22/2009 4:29 PM (GMT -6)   
Hi all,

just got back from the doc some incompetence on someones part they seemed to have overlooked my coninfection test and i seem to have rocky mountain spotted fever, as well potentially have bartonella i am being retested as we speak. Since i don't have the money yo travel and see an LLMD i'm hoping my GP can get it together and really help me. I'm advising over the phone with an LLMD and get my GP to perscribe. My eyes and joints feel no that great since i was taken off for 10 days to treat yeast. This completely sucks. I've spent the day in bed crying and feeling like life would be better if i wasn't even here.
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