Lyme Disease Support Group

I'm now being treat for Bart. I have been on Levquin and my throat has been sore since I started treatment about 8 weeks. MY lymph nodes are all swellen and I feel like crap. I have pain in every joint of my body. I'm also very angry! Mostly, about how I was mis DX for yrs and gave it to my daughter...I just get so mad!!!

I also, have babs. Between the two I feel like I'm going to lose it!!!

What is easier to get rid of bart or babs? Pos test for both using a junk lab...

Hey, the same thing has happened with me and finally subsided. I am on iv rocephin and let's just say I am not the nicest person, this is my 8th week and finally the sore throat and swollen glands are not so bad and the PAIN which was TERRIBLE is almost gone by half. I have been on treatment for the babs/etc as well , and since October... I really can't say if anything has been licked at all, I was really sick, not getting better, so started the iv, then got SICKER-toxic, started questran and continue the rocephin/malarone,flagyl and zithro... I have lost it, it's terrible, and I know others who have been in treatment longer will come on and tell you their experiences and give you some hope because honey I am in the same boat and it feels like it's sinking all the time. My two boys have to be tested.. They are 8 and 5, needless to say, I am pissed and sometimes it is at the whole world as to WHY-WHY? Darnit! How is your daughter, if you have posted about her, forgive me, am tied up in the mailbox for a bit today..

From what I have heard, it's mixed by the way- as far as some symtpoms subside from bart before babs on treatment and vice versa, I wish we coould have some expected timeline for this but unfortunately the being so different it's a huge guessing and waiting game.. Just know it's not your fault.. It's 'theirs'.. someday, somebody will pay (there's a bitter statement) or at least realize the damage they have done by ignoring this epidemic

Post edited by: Canuck, at: 03/01/2009 12:13

Wow! you are on all rocephin/malarone,flagyl and zithro at the same time? Not even pulsing flagyl?

That would put me in the ER. For some reason, I can't tolerate many abx at once and my dosing has to be on the lighter side.

Just on the levquin and malarone and I'm dying...Rochepin put me in the ER twice and flagyl is like going through hell!

My daughter got Lyme from me via pregnancy. I went into preterm and gained 100 pounds of mostly fluid mix with fat...I was a swollen ball. My feet were so big no shoes could fit me and this was after the delivery...I got so much worse after the pregnancy. I didn't know I had Lyme. I knew I was sick but every DR said they didn't know until I got fat from pregnancy then it was Fibro since I was out of shape! They didn't believe I really was very thin before... I was just depressed from having the baby...blah… blah… blah...then the baby got sick with extreme GERD. They did test after test...I'm talking about putting a 3 month old out to do an upper GI and lower GI...they found nothing. Then at 15 mths Children’s Hospital GI Dr's said it was all psychological vomiting or rapid cycling vomiting but they couldn't officially could dx her with that until she was 5 yrs. They put her on meds that made her act nuts! She arched her back in pain. I mean she could not hold any formula or food down...up all night throwing up screaming in pain. We almost decided to get her stomach stapled. Glad I didn't!

That is when I knew my illness was passed to her and I studied every night looking to DX both of us. Lyme explained both our symptoms and everyone thought I was crazy...until we both came back CDC POS from LabCorp IGM 23 and 41 and with CD 57 levels form 32 to 40. But I can't get any MD or Pedi to report her to the CDC. There is even no record at her OLD PEDI's office of him ever giving the test, which is dumb because I have his name on her lab test anyhow. I knew she was CDC pos because they refused to give me the test results back. I called every day twice a day for two weeks and finally got a call from her PEDI. I fought with him until a tornado hit and we had to take shelter. I never spoke to him again. I just got all her medical files and left his office the next day.

My baby suffered and there was talk of feeding tubes cuz she was so small. She didn't talk and had black circles under her eyes and slept all afternoon from noon to 5pm. Then we got her treatment and it has been uphill since. She is now the tallest and heaviest in her class, starting talking, and being awake during the day (non stop now!) LOL! And is a different kid. Her GERD is gone except for the once a month vomit. Which I consider normal.

That is why I am mad. If I had know she/we had Lyme I could have treated her instead I was ridiculed by other moms and PEDI's for being a bad mom...it was always my fault...I gave her the wrong formula. I gave her too much formula. I should just let her lay in her vomit and fall asleep on her own and then she would stop....ect...I spoiled her too much! I was too worried all babies spit up...not like she did. We walked around with beach towels to pick up and catch her vomit.

I guess that is why I'm mad and still no one is doing anything about it...to prevent this from happening to other moms! I can't forget or forgive....

"Just know it's not your fault.. It's 'theirs'.. someday, somebody will pay (there's a bitter statement) or at least realize the damage they have done by ignoring this epidemic."

Post edited by: ldsucs, at: 03/01/2009 21:10

Post edited by: ldsucs, at: 03/01/2009 21:17

Post edited by: ldsucs, at: 03/01/2009 21:18

Bless you, what a story. Would love to put that in an article here. For sure. I am on flagyl twice a week and I am about dead and should have been in the ER a zillion times at this point.. It's crazy , intolerable and I am doing no activity. My heart has been affected probably right off the bat, my pregnancy is what first got me sick and I blew up like a balloon as well. The spitting up thing was a huge issue for my first son, not my second and what a familiar thing reading all the things you were told and others assumed. Like a mother doesn't have enough guilt naturally? This sometimes seems totally impossible. I appreciate you sharing that. I do wish I could quit some of these meds. My doc is usually super conservative too. It's too much.

Thanks! You can put that in an article here if you want. Iknow it's tough enough being a mom and she was my first and last so everyone really though it was "new mom sydrome!"

Cut back on some meds then. My dr is the same way, but I make the final call now! I only went to the Er because I started having seizures which they still can't figure out. It's not epilepsy. They think it's my heart too, but my echo showed a very strong heart. So now they are giving me a tilt table test.

A tilt table test is considered positive if the patient experiences symptoms associated with a drop in blood pressure or cardiac arrhythmia. A normal person's blood pressure will not drop dramatically while standing, because the body will compensate for this posture with a slight increase in heart rate and constriction of the blood vessels in the legs.If this process does not function normally in the patient, the test could provoke minor symptoms to a very severe cardiac episode, depending on the person. In extreme, rare cases, tilt table testing could provoke seizures.

What is wrong with yr heart? Do yr kids have Lyme too?

Post edited by: ldsucs, at: 03/01/2009 21:36

You are great for throwing those definitions in there. I explained that very thing in a message earlier and asked if I could post out here as it was long ! I do want to cut back, wish I could quit. You could have had an autonomic response to lyme to make you have such variations in pressures to then trigger seizures... did you have an EEG? I am going to post that article-- you can too! All are encouraged... although the screen is different and some can be intimidated by it,, I doubt many here would be, it's really easy...will let you know either way.

Idsucs, I am so sorry you baby had to go thru all that. I almost cried just reading your post. Is your daughter being treated for her Lyme, Bart etc. If so what is she on. My son came back CDC + and he has an appt in Missouri in April with a LLMD who specializes in children. I live in New Orleans so we will be driving there on Easter Sunday for his appt on Monday. My sister-in-law will be driving with me and the kids.

My son 5, has had a slew of problems since birth.He now has ADHD, ODD, Epilepsy and is on meds for all. My daughter 2, is completely different. She is the total opposite form him. I have not had her tested but I am going to ask the LLMD in MO if he can just give me a scrip for amoxy for her so IF she does have it I can knock it out b4 she shows any signs.

In Nov of 2005 I delivered my 2nd child at 39 weeks and he was stillborn from a severe cord accident. After his death and having to bury him my symptoms went hay wire. My hair started to fall out in hand fulls and I was extremely fatigued and every bone and joint hurt. This is when I went on a quest for a dx. I was told I had RA and Fibro since 1998, when I was infected. I knew there was something else wrong.I went to a LLMD in Pineville and was dx in June of 2008. I got pregnant with my daughter 5 months later after my sons death and we move back in our house from a FEMA trailer.

Stress and trauma can bring out dormant Lyme and the loss of my son was to much to bear. He would be 3 now and not a day goes by that I do not think of him.

I wish you luck in treatment and I wil keep you in my prayers. You and your daughter both.

May the Lord bless you and your family. In Jesus name.

In his service,

Krissy

Wow! I am crying over your post! Especially since I know I am lucky my daughter made it! The preterm was serious. I almost delivered at 30 weeks and was told she would be in the NICU because her lungs would most likely not be developed. They gave me turbutiline to stop me form dilating I was 3 cm and 85 percent effaced. The drugs made be hallucinate but I had a gut feeling that she would be okay without the drug. The drugs they gave me made her kick very violently. So I stopped taking the drug and was put on bed rest and on a wing and a prayer she made it to full term!

The MO Dr is great! We see him and will be there the day before Easter too. My whole family has lyme...me, my daughter and my husband all positive. I'm the sickest. I hope you call that DR and get all of you checked out. I know he is expensive that is why I am starting a non-for-profit organizaion to help familes pay for Lyme treatment. Focusing on Moms as we run our families. When mommy gets sick the whole family suffers!

Yr hair falling put is a sign of wilson sydrome. I had the smae thing happen to me! Google it and get on some thyroid meds.

I'm so sorry for yr loss!

God or the higher power is telling us that this disease is a real threat! Why aren't we listening to him/her? I think we talk and ask for too much we should quiet our minds and just listen.....

That is how I have made sense of everything in my life. Everything had a purpose...even though I didn't like it!!!

Take care!!!

Again so sorry for your loss...

Post edited by: ldsucs, at: 03/02/2009 08:33

Oh my dear friends...I am so sorry and pissed off that you guys have had to go through this. It is so wrong.

ldsucs - my heart goes out to you. your strength and determination is amazing...

stay strong

Hi everyone

What you've all achieved is awesome.

My ND doc follows the Baha'i faith. She's a pretty amazing woman.

She posted this prayer on our blog. Depending on your faith, belief, or spirituality - see if this prayer will help.

"O God! Refresh and gladden my spirit. Purify my heart. Illumine my powers. I lay all my affairs in Thy hand. Thou art my Guide and my Refuge. I will no longer be sorrowful and grieved; I will be a happy and joyful being. O God! I will no longer be full of anxiety, nor will I let trouble harass me. I will not dwell on the unpleasant things of life.

O God! Thou art more friend to me than I am to myself. I dedicate myself to Thee, O Lord."- 'Abdu'l-Baha

Thanks

Lisa