Briefly for those who haven't seen my posts elsewhere:

Over 18 y.a. pregnant with my 3rd; I was attending University finishing my PhD in Developmental Bio when I started very strange sx- all attributed to the pregnancy and stress of school plus kids. By end 9th month I lost ALL preg. weight, cardiac sx, rashes.

I delivered a surprisingly healthy son, with exaggerated reflexes and reactions to stimuli ( sound, light etc) and GI issues- Of course I was told it was ONLY due to being exposed to high adrenaline from MY "panicked and anxiety prone feelings that I was ill when I wasnt".

6 months of misdx post partum depression ( that began BEFORE delivery????), psychiatry and drugs etc and I was getting WORSE physically-

when I finally had enough, I literally grabbed shrink by neck ( good thing his kids and my older 2 went to same Solomon Schechter!!) and demanded to see HIS Dr.

Long story short(er), pos for Lyme!!! I was living in what was then one of the highest risk areas of NJ (Ocean County) and still they missed it.

I was subsequently Pos for Bart too once they accepted it can be a TBI

Well, then and since Ive had various levels of cardiac sx and damage, neuro sx and damage the latest severe frequent vertigo and equilibrium losses.I have been "terminal" 3 times in past 5 years and currently am about 70% disabled, housebound and often bedbound ( more accurately recliner bound--cant lie less than 60 degrees for past 8 mo. now-UGH)

Evan, who grew out of the GI and hyper reactivity,had a tick bite age 3 and treated with 2 short courses abx--we STILL didnt know enough re: congenital infection. STUPID me figured he was ok. Then after higher than usual amount of sinus and throat and ear infections ( I attributed it to being a day care kid--Jewish Mom guilt!!) he started to be sx at age 12 and tested pos for myco

after a few months he seemed again fine, traveled to Europe/Mediterranean ( 2003)with People to People and under the worst heat wave had 1 case of heat exhaustion but was ok.

Started 9th gr and 2 months in, fell VERY ill- pos Bart suspected Babs, and now we seriously knew Lyme.

His immune system was diagnosed to be deficient(unk if congential DUE to Lyme or genetic or both)but it DID explain all those infections!!. Since then the past 3 years he has only been able to be home instructed 2 terms and stalled midway thru 10th grade. He turned 18 this past fall and is VERY disheartened.

We have tried every abx and combo available, IM too,even desperately tried herbs and TCM/Accup.etc

He is now offocially a "treatment failure". A short period of IV IG helped a bit but all Drs say we cant/shoudlnt retry--his IGA also low and it will unbalance, and while low he is never "low enough" to risk the tx.

Right now Id say HE is 90-95% disabled, constant pain, all the usual neuro Lyme ssx. We BOTH have severe dysautonomia triggered by genetic presdisposition plus Lyme infx

So thats our story and why I am active on many sites trying to share as much info as possible.

Personally, Ive directed food pantries even while laid up, instituted a program providing backpacks filled with school supplies to needful kids that still comtinues today,and have been a Lyme advocate and patient advocate for nearly the entire 18 years of my own challenges with it.

My older kids "give back" too--my older son in Boston finishing an MS

is an EMT and puts in more calls while on break from school than many living here year round. My daughter is doing PhD in anthro-primatology at ASU and volunteers countless hrs at animal refuges and zoos in between going to exotic places for her data

and even Evan between his challenges had started a program so that pediatric patients are given a "goody" bag filled with comfort and entertainment item while in hospital that is now in 3 states and 5 schools as a community service project called "boredom bee gone" ( no typo the logo is a bumble bee)

I was among the original handful of the LDANJ ( now LDA) meeting in Jackson NJ at a school room a few blocks from my then home. I helped the school district enahnce support of all chronically ill kids with emphasis on the erratic nature of Lyme.

In my "other" life I ran workshops and wrote curriculum so that k-12 teachers improved the teaching of science;

as well as taught a few generations of pre meds and nursing student the basics of Anat and Physio and other science.

I have always provided to anyone asking my c.v. and personal info--I believe that when youve nothing to hide, there is no reason not to.

My "agenda" or belief system includes open honest sharing of factual information; uncovering shams and scams into the open light for all to scrutinize and to give us the freedom we all should have to make our own decisions (providing it doesnt hurt others) with fully INFORMED consent.

Sometimes agreeing to disagree, and always after sharing conflicting info saying " do what YOU think is best as long as you are aware of all the info"

I hope I will enjoy being here as much as I think I will!!!

And I hope my sharing will b helpful to you all as much as I hope it is for me!!!

I ask you to excuse my typos and dyslexic often rambling speech pattern--brain damage plus vertigo will DO that to a previously high functioning brain!

( in case I hadnt said, I never finished the PhD and remain EBD-- "everything but dissertation" oh well)

Finette

I'm so sorry about your son. That's got to be tough for you! The only thing worse than suffering from something is to watch your kids suffer.

I hope good things happen for you guys - again, glad you found MD Junction - it's been the best resource for me in dealing with all this. People on here are great!

I also ran programs in social services - very rewarding, I miss it!

That is one sad story. I'm so sorry about your son. It's the worst watching a child suffer.

You mentioned that you've tried herbals. I'd like to know more about that. I joined MD Junction only after finding my way through "the maze of Lyme." I chose the alternative route to heal my Lyme Disease. I did not take ANY conventional antibiotics. I also had ehrlichia, babesia, and bartonella and HHV-6 and HHV-7, and EBV.

My first tick was on my neck in 1991 or 1992. We live in Tennessee and most people down here know NOTHING about lyme disease. A friend of mine removed the tick. I don't even remember how it was removed. In fact, I didn't even remember the bite until several months ago when that friend reminded me of that "special day." In retrospect, soon after that day, I began to have migraines and a stiff neck. I attributed those symptoms to stress of being in college. I was always stretching my neck in class. I remember a professor even commenting, "Why do you do that with your neck?" I also began to feel crawling sensations on my legs. It was as if there were bugs crawling up my legs, but there was nothing there ( on the outside at least).

Fast forward to 1997. I had a strange bite on my leg. I thought Hmmmm, wow, I must have been bitten by a spider while out jogging. There was a red rash at the site. Still, I knew nothing about Lyme. Never even heard of it! I also became pregnant in 1997. I delivered my first baby in April 1998. By the Grace of God, she was a healthy baby. However, I started to feel a lot of pain in my neck and back. Again, I thought my pains were due to motherhood. I had another baby in 2000. Again, this baby was healthy. My pain became even worse. I still thought my pain was just from the stress and strain of carrying my baby and toddler. I did start to look for answers. I was told I had arthritis.

Alright, here comes the third baby in 2004. Now, this was a crazy pregnancy with complications of PIH. They delivered the baby At 36 weeks. Fine, she was healthy, but my BP would not come down and the extra fluids were not "coming off" either. I weiged 180 pounds! My normal prepregnacy weight was 102 pounds! It was crazy. a doctor released me from the hospital anyway. she said, "Sometimes it just takes a little extra time for the fluids to come off. You'll be okay. " My BP was still high, too. Well, Guess what? we were in the ER six hours after being released from the hospital. Now , towing my newborn baby with us. I was breasfeeding my baby, of course. Alright, I had an enormous headache, full of fluid, and BP high. They gave me some Ultram and sent me home! I wasn't spilling protein, so I was okay. Alright, the next night comes. I wake up with the worst chills imaginable. I was paralyzed by these chills and shaking uncontrollably. Back to the ER. They finally admitted me. Yes, I still have the baby with me. Well, here we go with all kinds of tests. First, I had a blood patch. It failed. The headache that I had was agonizing and relentless. Now, I also had to take care of my newborn baby. The nurses wouldn't touch her because she wasn't a patient anymore. Isn't that crazy? Well, then I had a spinal tap, MRI and CAT scans. They wanted to do a radioactive kidney test. I refused that because it would require me to be away from the baby for 48 hours. All the test came back negative. (except for some herniated discs...I found out later that a lot of people have herniated discs and have no symptoms) They just couldn't figure the source of the headache, nor could they explain the crazy chills or why my BP was not budging. They finally gave me Lasix. Can you imagine carrying around about 60 pounds of fluids? My brother told me I needed to be in the circus. I was in the hospital for 5 days and had no answers. I was anxious to go home. My BP was STILL high even after the Lasix took effect. I went home because there was nothing else the hospital could do for me. When I got home, I started throwing up....back to the hospital. They did another blood patch. This one must have done something, because my headache finally disappeared. WHew..that was a crazy time. Looking back, my undiagnosed infections were driving all those crazy symptoms. Not once was I ever tested for Lyme. The good news is that my baby was not infected even though my disease was obviously very active. That may be of some comfort to anyone who is pregnant.

In May of 2004, I was diagnosed with FM. I was given pain pills and sleeping pills, patted on the back and told "Good luck and keep your appointment with your rheumotologist." You all know where this road leads....to nowhere. I received multiple prescriptions which I call "band-aids" to cover up my symptoms.

The next three years were a blur of pain, fatigue, vague sore throats with bouts of laryngitis, arthritis in elbow, knee , toes and fingers, clobbering headaches, stiff neck, more crazy chills, etc. You all know the symptoms. By 2007, I was barely putting one foot in front of the other. The brain fog was so bad , I couldn't even put a simple child's toy together. I had to concentrate and my kids had to be quiet so I could think. I know all of you can identify with that kind of brain fog. Naturally, I kept asking my doctors, "Is there anything underlying this FM? How can FM hurt so much? I keep getting worse. This is unbearable."

My rheumie told me that I needed to put my brave face on and deal with it. He also suggested that I see a psychiatrist, because there was nothing else wrong with me. He told me that I had every test . So, here's the lesson: If any of you are told by your doctors that your symptoms are all in your head, RUN out of that office as fast as you can. They will not help you.

Of course ,it turns it was all in my head, little spirochete shaped bacteria that is!

Finally ,in March of 2007, I found an MD in Atlanta, Georgia who believed me. He tested me for Lyme and all that other crud and it was all positive. After meeting my doctor and his staff, I knew I had to give alternative medicine a try. I undertook a customized program of detoxification, metabolic-immune support, nutritional, herbal and homeopathic supplements. I also bought my own hyperbaric oxygen chamber (lyme cannot live in an oxygen rich environment and neither can cancer). I also started acupuncture back in 2006. To further my progress, I bought my own far infrared sauna. It really helps to detox. I'm glad I did, because I am walking on sunshine now. I cannot tell you the difference in my life now. That is why I'm here. I feel compelled to share my story, because if I can get better, so can you.

There, that feels better. This is the first time I put my story together. We are all linked by similar stories of frustration, some of us worse than others However, I believe we can all have a decent outcome. We can get better. I did.

Post edited by: lymie, at: 03/10/2008 11:56

I took on the job here as moderator after about a month of being asked. I just didn't know if I could committ to something like that. Ultimatly we all know I did. I myself have done tons of charity work, and since starting treatment I haven't been able to, so this is what I do now. Find people doctors, learn and educate about this disease, and support. I'm glad you found us, and hope you make a home here. It's a wonderfully supportive place.