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New to the forum and thank you all


Guest Finrussak

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Guest Finrussak

I have been to **** and back so many times. I have just spent hours ( in tiny 10-15 minute doses...like many, unable to be upright at my pc) reviewing your posts. I finally feel like I am NOT alone or crazy or "lazy". (I am awash in greatful tears and unfortunately the emotions have provoked a minor 'episode'...but its one I can almost welcome due to the RELIEF!!!)My own sister has repeatedly told me that I am still "ill" because I truly dont want to get well...if I TRIED hard enough or FOUGHT the symptoms ( i.e. ignored them) Id be fine. She even called me selfish for all of the trips to specialists, and ERs,needing home health aides etc . She even had the audacity to call my estranged husband who is finally trying to be a little more supportive financially and physically -driving to ERs etc...that he shouldnt have to "deal" with me becasue Im not trying to get well...and he should put me in a nursing home and walk away!!!! ( which totally upset my 2 older kids, now 22 and 20 away at college) AND for the past 18 months my 16 y o is also suffering. We both have very bad lyme and other tick borne illnesses and I myself have had these weird and funky symptoms you all describe so well...and I finally got to see Dr Grubb this past June and I am NOT crazy or lazy- I have the unfortunate panoply of Joint Hypermobility plus OI/POTS due to most likely the multiple tick infections and autoimmune components. Since I was infected near end of pregnancy with the 16 yo and since he was rebitten age 5 and incompletely treated; he has relapsed bad...we are both bedbound etc. Last few months he is showing all the signs of OI/POTS. Now, we both also have other medical probs as well;. Curuious thing is he has been called mild Chiari and My own MRI brain last year for first time showed a SHIFT of my hindbrain to be called borderline Chiari too!!!-- noticed a few posts mentioning this...

Anyway for now I want to say THANK YOU and GOD BLESS all of you who share and support each other and if so allowed may I also join your group???

So many questions...so little time...especially since the LYME BRAIN ( brain fog in addition to the POTS fog) comes and goes...may all of you have a better day!!!

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:( Welcome ;)

I am sorry that you are going through all of that. I am glad you finally have a diangosis.

I am sorry about your family, these illnesses(?) affectes all around us, and some don't deal as well as others.

I am glad you found this forum and good luck.

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Just wanted to say welcome, and I am happy you are finally talking about whats going on, it helps to let others in!

Glad you a here!

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Welcome to the forum! It is very exciting when you finally realize you are not alone in this. I too have POTS as a result of a Lyme infection, which has not yet been treated because I was just recently diagnosed with the Lyme during pregnancy after suffering from POTS for 4 years. Reading your post makes me all too aware that I need to have my children tested sooner than later...I had Lyme through both of my pregnancies because I did not know about it until the second one. My doctor would like to test the boys when the little one is about 6 months. One question...was your son tested right after your pregnancy and treated, or did they wait until he was 5 to do it? I am just curious. I am a little worried about passing any of this on to the kids- mainly the Lyme because we don't suspect my POTS to be genetic (nobody in my family has ever had any form of dysautonomia). Again...welcome and hope to see you often, even if it isn't always in the happiest of times! This is a great support network.

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Guest Finrussak

Hi Jessica

Unfortunately not much was known about congenital transmission of Lyme but as its a spirochetal bacteria like Syphilis it was suspected. I couldnt even get my own docs to believe I had something 'real' and was mistreated for post partum depression for 5 long months...you know nervous young woman, 3 little kids, teaching and doing PhD work at nite, all those crazy sx MUST be her 'nerves'...until I almost got arrested when I grabbed the shrink by his collar and demanded to be sent to his own Dr. He complied to "prove" to me it was all in my mind...and every darn test for Lyme lit up like a Xmas tree...by then it went cardiac and neuro and being pennicillin allergic little choices for meds...after 2 long yrs I was in remission but the baby had reflux and vomiting spells and was hypersensitive to sounds and lite and ALL was ignored or attributed to my pumping adrenaline all 9th month and after...especially given the stresses of being so ill and no one believing me....at age 18 mo he was bitten by a nasty tick and i demanded tx but back then they still didnt treat w/o sx. At age 5 he complained of his knees hurting, swelling and fevers, and he broke out with a bulls eye rash on belly ( no new bite as far as I recall...sometimes happens this way...I had a multiple rash 5 yrs into my ordeal!)

By then I and others knew enuf to demand 2 courses of 4 wks each of antibiotics...his sx subsided and I didnt think more of it until 7th and 8th grade when he started with weird fevers and illnesses...long story short...was Lyme and Bartonella and Mycoplasma and possibly Babesia, a compromised immune system (Igg) added to this or may be caused BY this...will never know.

Anyway I dont have encouraging news except to say some drs now treat during pregnancy to lessen chances of transferrance of bacteria to baby; others wait. you need a VERY good LLMD and especially a knowing pediatrician...the baby's and toddler's immune system may not be recognizing the infection and yet still have it ( so blood tests may not show it). If you notice ANYthing unusual...seek help...I can recommend the ILADS site and the LDA site...I personally know the woman who started the Lyme Dis assoc NJ which then became LDA...kit and any help I can give re " lyme" etc Id be glad to...thanks to my background in science ( 1 class short of my PhD) and the too many yrs with it I know a lot and can give you places to find out even more. Also please know that once Lyme is under control the POTS is easier to handle and when you "flare" with Lyme (usually just after starting treatment and in 3-5 wk cycles) all other sx worsen too. Its actually a welcome reaction, means meds are working. Be well

Finette

Welcome to the forum!  It is very exciting when you finally realize you are not alone in this.  I too have POTS as a result of a Lyme infection, which has not yet been treated because I was just recently diagnosed with the Lyme during pregnancy after suffering from POTS for 4 years.  Reading your post makes me all too aware that I need to have my children tested sooner than later...I had Lyme through both of my pregnancies because I did not know about it until the second one.  My doctor would like to test the boys when the little one is about 6 months.  One question...was your son tested right after your pregnancy and treated, or did they wait until he was 5 to do it?  I am just curious.  I am a little worried about passing any of this on to the kids- mainly the Lyme because we don't suspect my POTS to be genetic (nobody in my family has ever had any form of dysautonomia).  Again...welcome and hope to see you often, even if it isn't always in the happiest of times!  This is a great support network.

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Guest Finrussak

Hi Sally Ann

Thanks for your kind words...may I ask you to think about something? The hardest for Evan to deal with is having no one to talk to going thru similar stuff. His friends have either cut him off like he was contagious or they say stupid stuff like "youre lucky to not have to go to school" when all he'd like is to be well enough to go!! Perhaps your daughter maight one evening IM him?? introduce herself, start a conversation? He's a nice kid, may help. She can find him under AIM name ehr24. If not, I understand...thanks

Finette

hi and welcome

i am sorry to hear you and your 16 yo are not well. i too have a 16 yo who suffers ,along with myself.i look foreward to reading your post.i am glad you finally got dx , i know how long that can take.

sallyann

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Hi Sally Ann

Thanks for your kind words...may I ask you to think about something? The hardest for Evan to deal with is having no one to talk to going thru similar stuff. His friends have either cut him off like he was contagious or they say stupid stuff like "youre lucky to not have to go to school" when all he'd like is to be well enough to go!! Perhaps your daughter maight one evening IM him?? introduce herself, start a conversation? He's a nice kid, may help. She can find him under AIM name ehr24. If not, I understand...thanks

Finette

hi and welcome

i am sorry to hear you and your 16 yo are not well. i too have a 16 yo who suffers ,along with myself.i look foreward to reading your post.i am glad you finally got dx , i know how long that can take.

sallyann

Hi Finette,

sorry that i didnt get a chance to reply sooner, it looks like my mom beat me to it! I am Sallyanns daughter, Sara. Im 16 and have been dianosed with POTS, NCS, OI, and SVT for nearly two years. I know first hand what youre son is going through being a teenager suffering from Dysautonomia. I also know what its like to have noone at all to talk too. I dont have anyone except my mom who id consider my friend. i used to have so many friends, dates, even enemies, all that a part of me misses. But a part of me is so thankful for. ive learned that all i need to be happy is myself, and im stronger because of this. Ive relized many things about myself from having an illness at a time when were supposidly 'finding ourselves' anyway. were going through so many changes, heart breaks, loves, happiness. and thats just being a teenager, not counting the fact that we now have to face all of that sick, and more often then not, abondonded and not being believed by people our age. Let your son know that no matter what he is facing now, it does get easier. often the illness eases up, or you find a balance in youre lifestyle that makes things easier, and you become stronger everyday. I would love to have the chance to talk to youre son. Im often of AIM, my name is CrazieShortie420, and ill IM youre son as soon as i see that hes online. Thank you!

:P Sara

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Hi Finette,

Welcome to the forum! I felt so discouraged and misunderstood before I found this place. Now, even though i still get those feelings at times, i have the comfort of knowing there are others out there who feel the same way and understand my symptoms without question. It's a great place to be. Glad you found us for some support!

Kristen

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hi finette -

i'm a bit tardy, but just wanted to say welcome! i'm sorry that you've had such a rough time but am glad that you've joined us on the forum. it is definitely a great resource for info & support.

:lol: melissa

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