Hi all, new poster here, long time lurker...

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Beautiful Disaster 28
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/5/2009 5:11 PM (GMT -7)   
I just wanted to say hi. I have been a LONG time lurker, so I feel like I know half of you. I have been lurking for over a year. I thought I would introduce myself. I am a 28 year old female from FL. I got sick last February (2008). Endless ear infections, eye infections, headaches. Then, it seemed to go straight neuro. I have a lot of nerve pain and horribly tight muscles in my neck. I have burning feet, burning face, burning neck skin. I have lost so much weight which is really sad because I was already very thin to begin with. I have horrible insomnia.

Last week, I slept 6 hours in 6 days. It was living hell. I have horrible lower back pain and pelvic pain, however, I have had both of those things longer than I think that I have had Lyme....but who knows, that might have actually been my first Lyme symptoms. However, I hope not because I had a baby after the back pain and pelvic pain started. My little boy is 3 and he is as healthy as a horse and smarter than a whip. I am blessed in that sense, but of course I always worry about him, with Lyme you always tend to notice every little thing and wonder if it's Lyme.

I have left eye pressure that drives me nuts and worries me even more. When I first got sick, I had MRI's of my brain, neck, and back...everything came back fine except for the lower back had arthritis and lots of other problems. I had every blood test under the sun. I've been tested for autoimmune diseases, thyroid, HIV, etc. I've had CT scans of my pelvic area, and many, many ultrasounds of my ovaries due to lots of pain in those areas. All unremarkable. No one ever suggested testing me for Lyme, but last year in April when I was searching the internet for my symptoms, I came across Lyme disease and so much of it fit. When I read it could cause rib pain, it hit me like a ton of bricks because rib pain seemed to be such a strange complaint.

I also had surgery to remove a lymph node because I was so worried about it. It came back as a benign inflammation but I still have so many swollen lymph nodes (particularly in the groin area) and that are actually very painful. I still worry about them but they say they ruled out anything bad - but sometimes I don't believe them. I live in a constant state of worry. My hair started coming out in fairly large quantities and I started sweating at night this year. I have only had 2 menstrual cycles this year. I kind of relate it to not eating but 2-3 meals in an entire week, not sleeping, worrying, etc. I am in really bad health and the pain I live in is unimaginable. I also have bad bone pain that flares ever month. It will disappear for a month and come back like clockwork. All of my other symptoms are always there.

I went to the doctor and asked for a Lyme test. I had a positive ELISA and then a positive WB from Labcorp. I was on Doxy for 3 months (last year, in April-Jul) and then I found an llmd. I was on i.v Rocephin and Flagyl for a month. I felt like that could have been the way to go but I felt like I would have needed it for a year. A month was not long enough. I had the IGenex test which came back IGM positive and IGG positive. Positive band 31 as well, I also had the confirmation test that confirms it was from Lyme and not viruses - I guess that's what it was....all I know is that it cost me a lot more money! lol.

Even with the positive tests, I still worry that I don't have Lyme. I think we all do that at times, it seems. I tested positive for Bartonella as well. We tried treating the Bart with Levaquin but it ripped my tendons up and they had to pull me off of it. We were going to do Rifampin but that also made me very ill. I couldn't take care of my son. I ended up having a very BIG disagreement with my llmd which left me very angry, so I left him. My savings was drained anyway, so I don't know how much longer I could have paid for him anyway.

Well, that's me. I just wanted to say hello and I hope to post more here. I was on a different Lyme board but I have always found this one to be friendlier. I hope you don't mind if I join!

P.S. I never saw a tick, ever. I didn't get a bull's eye rash. There was a ton of mosquitoes where I lived and always feared that I got it from them. I had a husband who had Lyme (with the bull's eye rash) as a child but he was cured with 1 round of abx. He is healthy as a horse today. When I went on Doxy initially, I ended up getting bull's eye rashes on my upper body. Isn't that weird?

Post Edited (im_so_sick) : 7/5/2009 6:14:49 PM (GMT-6)


james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/5/2009 5:33 PM (GMT -7)   
hello,

i hear ya on checking everything out.. my problem was i got sick with mono first i believe.. then i got unlucky and got the Bite next with everything going down at once.. I became very sick very fast..


i'm in the phase now.. i don't want anything to do with nothing, until i see Igenex and A LLMD.. then i can go foward...


I'm glad you decided to join up and talk about yourself.. there are many people on here with alot of helpful info.. and you know what, it has helped me alot..

I get sad alot.. because i never think i will be normal again.. i try to stay positive, but its hard when your world is falling apart...

take care and keep on posting..


p.s. and its not weird to get a bulls eye rash after taking doxy.. i took doxy and the next day the rash showed up...literally 12 hrs later i had the rash.. that was the start of it all...

Post Edited (james from missouri) : 7/5/2009 8:10:44 PM (GMT-6)


+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/5/2009 5:41 PM (GMT -7)   
Welcome to this board, im_so_sick.

I am so sorry you are so sick, in so much pain, and that your relationship w/ your Dr went sour. Are you under no treatment at this time?

Suspect TBI in 1972 (date corrected by Mother!) Attacked tonsils, pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day


Lovelabs
Regular Member


Date Joined Jun 2009
Total Posts : 367
   Posted 7/5/2009 6:33 PM (GMT -7)   
I was so sad reading your post. I still can't believe how many people have this disease. It blows my mind. I am sorry you are so sick. Are you on any treatment now? I know how hard it is to keep it together for the kids. It is so hard when we feel sick to keep plugging away. I am kind of in the thick of all of this myself, I have been helped a lot by people here. They all understand. I hope it gets better for you. Are you doing any detoxing? I found the baths to be helpful. They hurt at first but now they make me feel a little better. Hang in there!!!

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/5/2009 7:07 PM (GMT -7)   
I'm_so_sick,

Hi there:) Welcome to the board! I'm so sorry you had to go through all of that and that you are in so much pain. I just wanted to ask, were you diagnosed in Florida? Were you seeing a doctor in Florida?
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


Beautiful Disaster 28
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/5/2009 7:47 PM (GMT -7)   
Thanks for the welcome everyone. The last time I treated anything was in Sept. I can't afford anything. I am going through a divorce and I am barely making it financially. I have a 3 year old son as well. The stress of divorce and custody battles don't help anything. I will always think my husband left because of my Lyme. I went from being a silly, laughing, young woman to very sick. Everything changed. I've lost everything because of this disease. My life is completely different. I miss it so much. There are no words to explain how much I miss my life. Sometimes my old life seems like a dream. The longer I am sick, the further away my old life seems.

I wish I could be on some kind of treatment. I have gotten SO much worse since going on treatment. I woke up one day and couldn't move my leg. It took me 2 months to rehab my leg. Now I am walking again. Then, my arm didn't work. My whole hand hung and I couldn't type, grab things, I mean nothing...but in 2 weeks, I was back to using it again. My left eye has a lot of pressure in it. I never had weakness or anything before I treated. I wonder where I would be now, if I was able to continue treatment.

I just don't see how I will ever get better because it just takes so much money to get better. I blew through 5 grand in a matter of a couple months on out of pocket co pays, llmd visits, supplements, Igenex testing, blah blah blah. That was all I had. When I didn't get better after all of that heartache, herxing, and money....my husband called it quits. He had a daughter before he met me and her mom was out of the picture for good, so I raised her as my own (before I ever had my son) since she was a baby. When he left me (she was 7 when he left me last year), he took her too, so that's been a huge loss. It was like losing my own child and I couldn't do anything about it. I'm just so sad, I have lost everything. But, my story is no different than everyone's here. We have all lost so much. Our lives have changed greatly. It's heartbreaking. And....most of the time, we don't even get recognition for it....insurance won't pay whatever it takes to get us better, it's not nationally recognized, and we have to fight VERY hard to get disability, even though we are probably very disabled. I don't have disability nor have I tried, but I'm just going off of everything I hear. I am so sick, I should get disability....but part of me says "Don't even try...you are just going to be disappointed". For curious minds, right now I am living off of alimony and child support...but that will run out in December, the alimony part. I am about to lose my health insurance as well. I don't know what to do.

Thanks for listening.

Beautiful Disaster 28
Regular Member


Date Joined Jul 2009
Total Posts : 21
   Posted 7/5/2009 7:55 PM (GMT -7)   
Yes, I was diagnosed in FL. I lived in Dallas, Tx. my whole life, except for a brief time I lived in San Diego and then Hollywood, CA. I moved here in 2003 because I was in the Air Force and this is where I got stationed. I am not outdoorsy. I've never hiked or been in the woods in my whole life. I just don't understand how I got this....unless it was the mosquitoes, because there were SO many where I lived in Ruskin, FL. There is SO much water/nasty ponds there, the mosquitoes were HORRIBLE. You would see a black cloud in the distance and it would be mosquitoes. It was hell. I know that some people don't believe that and I don't know if I do or not, but it just seems strange.

I was seeing an llmd here around Tampa....I am sure most of you know who he is. I had a bad falling out with him for a few reasons, unfortunately. I don't know of any other ones around here. I wouldn't go back to him if my life depended on it. I know I am not the only one who has had experiences like that with him. Most people seem to be big followers of him or have had the same experiences as me. I guess it's just a matter of opinion.

It was funny after I got my test from Labcorp as positive, the center of disease control, epidemiology division called me at my house to tell me THERE WAS NO LYME DISEASE IN FL. and that it was a false positive. Yet, he admitted that they are getting an alarming rate of positives but that it's not Lyme causing it....and they were trying to figure out what it was. My Labcorp test was only IGM positive, with no IGG bands and he said that means it's a false positive because I should have had an IGG response. After I was on some abx, my Igenex test showed lots of positive bands on the IGG side, but my IGM still had more. Who knows. I asked that guy who called me, "If this is a false positive, then WHY AM I SO SICK AND IN SO MUCH PAIN?" He said, "Well, I don't know but it's not Lyme because we don't have that here." I still wonder if they actually reported my case or not....

james from missouri
Regular Member


Date Joined May 2009
Total Posts : 432
   Posted 7/5/2009 8:12 PM (GMT -7)   
i'm sure it wasn't reported.. they are seriously behind in the times.. i think my PCP pulled a cheat book from 1958 that showed lyme disease for only 3 weeks, and all doxy no matter what co you have.

i honestly feel like i'm dying slowly.. can't describe it, maybe its in my head, but my CBC and bloodwork don't lie.. i'm just trying to eat good and eat alot of the right food and right supplements.. it seems to be helping.. i would feel so much better if i didn't have this darn Dry Cough.. everytime i cough i know the lyme is getting me. its quite sad.. and my dog might be sick also with it.. we come in pairs. and i'm so scared for him and really me. because if he is infected and cannot fight it off, i will die seriously. no joke!!!!

i can't sleep either.. i think the last good sleep i had was about 2 months ago.. i go to sleep around 12am wake up at 3am, go back to sleep wake up at 5am on the dot.. i don't even have to look at the clock, because i know what time it is.. i'm thinking about taking 2 tylenol pms tonight..

I'm losing my G/F and my job to a certain degree.. My family and friends get tired of me talking about it, they prolly just think i could snap out of it and i need a shrink.. its a crazy thing.


i was asking god last week, what is wrong with me while i was walking around the block one night, i looked around for a few seconds and said give me a sign.. i saw 2 deer staring right at me!! i was like wow!! i know he is listening to us..

its not fun... but from reading your posts, you seem to have great dialouge and are putting togther sentences very nice for having so much trouble... i'm glad to see your posts here.. i' hope you stick around.. but then again i hope you get better soon and go out and live a better life and check in every now and then...

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/5/2009 9:52 PM (GMT -7)   
im_so_sick,

welcome to the board. i am so sorry to hear your so sick, and going thro so much. it is unbeliveable what we go thro.i am sure you know more about it then i do. but i wanted to let you know your not alone. and i will add you to my prayer list :)

¤°´¯BIG.¤*¨*¤(¯`´¯)¤*¨*¤.Hugs¯`°¤.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/5/2009 10:04 PM (GMT -7)   
I'm_so_sick,

It seems very common for doctors, the CDC, etc to say that there is no Lyme here. I live in Louisiana and have been told that many times yet I talk to or see people that either have it or know someone who has it.

I thought about going to that doctor you saw in Tampa before I found an LLMD here in Louisiana. I had them send me the paper work and everything. I'm so sorry it cost you so much money. When you recover from financial hardship, you may want to consider seeing the doctor I go to. I've never spent that much money with him and he does take insurance. Just something to think about.

RD, our member on here, lives in Texas and has a positive WB. Her doctors are also telling her that her test was a false positive. Something is VERY wrong here.
2003: symptoms started;panic attacks,anxiety,heightened senses.
2007: Diagnosed with Lyme. Didn't start treatment. 
2008: symptoms came back with a vengence.
2009: Diagnosed with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Currently on 1000mg Amoxicillian,Ultram,Thyro Complex 60mg,Probiotics and supplements
**You never know how STRONG you are....until being STRONG is the ONLY choice you have.**


RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 7/5/2009 10:29 PM (GMT -7)   
CG i told you didnt i that the lab in dallas reported my positive test to both CDC and health dept. and yet the ID still thinks its fales. the jerk.

im_so_sick, you may want to check into county asince programs to help with your medacil. this is what i have had to do. there is also programs to help with some meds too. a minastrey in wacco is trying to help me with meds right now. i did a former post on this about a week ago. now acoring to the WB yesy to be positive for IgM you need 2 out of 3 bans to be postive. i got my 2 in..lol and yet staill its not good enough for the flipping ID i was sent to. in all my reserch i have yet to see were fales positive happens. but i guess it could do to a mix up in the lab. and i am sure that dallas Tx lab runs a ton of wb test.. hmmmm remeber there is no lyme in Tx...lol

with what i have been thro is it my understanding that most Dr in the south are told or trained to say there is no lyme here. but we know better!! i find this to be inmoral on there part.
and i am very saden by the lose you have gone thro due to lyme disease. it takes away so much from us. and i too morn my old life. i miss my hikes, and walks thro the park with my dogs.i miss being able to do more then 1 thing at a time.. now i am lucky to do that 1 thing at a time.

i wish you all the best.
   RD
 
still looking for answers.
 
Remember that advice if free, its your choice what you do with it.  :)

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