Adult suvivors of Rhesus Haemolytic Disease

Hi. I was born 55 years ago with a mother with blood group O- and mine was 0+. I had blood transfusion 48 hours after I was born and with my Mum being a doctor, she was mortified when she saw my billirubin values. She didn't know whether I would be able to speak, hear or walk. As it happens, I was a very active and highly intelligent child. However, until the age of 10, I used to suffer from severe tonsillitis and my teeth were always in a bad state. My problems started in my 30s - anxiety and panic attacks. 2 years ago, I fell badly an injured my ankle and it continues to hurt, although it was checked and was not broken. There seems to be a lot in common between us. I wish you luck!

I am a Rhnegative mom who was induced 5wks early because I had developed the antibiotics which were attacking my 2nd son.  Because the bilirubin in my amniotic fluid had developed high levels, the decision was made to induced.  He had two blood transfusions and spent a week in the hospital.  The antibodies were discovered with my first son at about two weeks before my due date.  He came very soon after this but with no problems.  Once he was born, they gave me the RhoGam shot immediately after he was born.  At that point, they did not give it to the mothers before the baby was born because they did not know what it could do to the baby.  I became pregnant with my 2nd son eight years later.  I was not given another shot because they said once the antibodies were started, it was too late.  My son is 25 years old.  When I researched the disease back then, it was my understanding that at the stage of development when the antibodies began is what determined what was detrimental to the baby.  While extremely intelligent (he's an aerospace engineer), he suffers from OCD and depression.  I will add though that these illnesses run in my family.    He also has had chronic ear infections.  What led me to your forum is my researching about gallstones as my son went to the ER today and they discovered he had one.  20% of the gallstones are made of salts and bilirubin.  I wonder if there is a connection.

Howdy from Texas. Glad to find this thread as I have been in pretty good health until about 4 years ago and then have been progressively more ill.

I am O Rh Negative Blood Type Current Diagnosis are: Fever of Unknown Origin, Inflammation everywhere intermittently, Thyroiditis, Hashimotos and Graves Swings, Scolosis, Buldging Discs, PCOD, demineralizing bones/osteoarthrosis,  history of an etopic and also blighted pregnancy. Currently I am being ruled out for autoimmune encelopathy. I have high TPOAb and TgAb antibodies. Noone here can get this thing diagnosed correctly and I don't meet criteria for diability - so I am working part time as able and living off of life insurance. I am trying to figure this out. I was running half marathons and rock climibing prior to being ill, today I have trouble getting the trash out. I am doing the no lechthin paleo autoimmune diet and a bunch of suppliments. Noone has offered me treatment but are willing to monitor me as I cascade down this awful path with doctors monitoring. Makes me so angry.

I am wondering about RhoG (RhoGAM), Rh negative status and the protective mechanism from a womens hormones? 

I had a RhoGAM shot in 1996 (the year they supposedly stopped putting mercury in it  - gross) after my second pregnancy. I don't think I received it after my 3rd and was very ill after that pregnancy terminated. I have not been able to carry a pregnancy to term.

My symptoms became chronic when I became perimenopausal.  The closer to menopause I get, the sicker I became.

Autoimmune encelopathy can be caused from TPOAb and TgAb antibodies. And one underlying cause of this can be a teratoma (fetal cells that can present like a fibroid). I am wondering if Rh negative follows that same trajectory? Either my immune system is attacking the forign plasma antibodies from the RhoGAM or the RhoGAM was not matched/typed correctly, or both. This could also be the same for fetal cells that could still be somewhere in my system.

When I first became ill, everyone thought I was perimenopausal and I started on animal produced pregnalolone. Natural pregnalolone is the foundational hormone for all the other women hormones and without it you can't build or increase hormone levels. I got well! Did the happy dance, and then 10 months later it stopped working. And then this downward spiral began. 

I think that a woman's natural pregnalolone can protect her until perimenopause - hence the many comments about sudden illness at middle age. I think there is great promise for it as a treatment by doctors provided they can get the dosing correct. Steroids long term will melt your bones - which may be the case for me. So looking for other options. Stuff I have found on Researchgate shows promise with a short high dose of vyclocvier and  also low dose naltrexone. Either deminishing the antibodies or increasing the hormones appears to help. 

I will be infront of an autoimmune neurologist next week (yay!) and presenting this to be considered and asking that UT Southwestern in Dallas do an interdiciplinary meeting as getting this problem treated will require this type of approach. Our collective symptoms involve all domains of the body. Your blood impacts every domaine of your body and so far I have been to 10 specialist who just do their own "speciality" and are not getting the bigger picture here. Or they think I am a nut. I have a great PCP who has allowed me to arm-chair quarterback this plan. 

Wondering if anyone knows of an autoimmune or immune specialist hemotologist who is knowledged in the Rh negative issues? UT does not have that, but they are a research hospital and I am hoping to peak their interest and provide them a resource.

Curious for your thoughts? It seems there are also two groups in this thread: I know some of you have a different senario of being born/reciepient of Rh Disease, others of  you may have aquired it - pregnancy/RhoGAM/transfusion are the vehicle.

Thanks and blessings to all of you for good health,

T. in Texas

T.

I have my first autoimmune neurology appointment tomorrow. Hope it will be productive. This problem has cost me 19K in out patient and ER visits over the last 4 years. 

Curious too if anyone on here has Rh- blood for both maternal and paternal grandfathers. Rh- can only be passed from the paternal line. I thought it was odd that I have a double whammy of it with both grandfathers being Rh- and I am Rh-. Scoured the journals for this question and have not found an answer. 

Hemotology is very complicated. If anyone knows of specialist in the states who work with autoimmune hemotology, I would love to get their name.

Thanks,

T.

Hi Everyone,

Im from Australia and sofar this is the only thing I have found about Rhesus. I have asked Doctors about this and they look at me as if I'm crazy. Mum is AB- & dad was O+ & I'm A+.

I have had bad sinuses since i was younger & bad eyesight. I am 42 & have had 2 cataract surgeries and this week I had a virectomy surgery for a detached retina. I have also not been able to have any children, i miscarried when i was 18 & the next two pregnancies were ectopic both requiring surgeries. I have problems sleeping & having a close peer group connections.

Mum was not told anything about Rhesus when pregnant with myself or older brother but she did say they took lots of blood tests. I was not jaundice & did not have any blood transfusions. I was not able to have breastmilk when i was a baby as i kept vomiting it up so i had carnation milk & mixed with bergers which mum was told to give me from a doctor as it would act like a glue and stay in my stomach.

Im so happy to have found somewhere that I can post & also have discussions with others regarding this.

Val

So glad I found this forum. I was the second child, born in 1960. Although my mother says that she told the hospital staff she was Rh negative, she says they did not listen. Within a few hours of birth I was severely jaundiced and rushed across town to the children's hospital where I was given an exchange blood transfusion, plus a normal transfusion due to anemia. The prognosis was not good, doctors told my parents that if I did survive I would most likely have physical and intellectual disabilities. Thankfully, their prognosis was wrong and I developed normally and have a high IQ (from my father). However, I have always had a tendency to get 'run down', to need additional vitamins, especially B group. I have suffered from anxiety and depression for most of my life, and now in my 50's have a range of health issues which are similar to others mentioned on this forum. I have asked my GP about the long term impact of Rh disease and he basically dismissed the idea. I found almost 40 years ago that I have low, though still normal levels of two immunoglobins - IgE and IgG I think, but could be mistaken. I was working at a medical laboratory and they needed new controls for some of the blood tests they ran, so they asked all staff if they would be prepared to have a small blood sample taken for anaysis. After analysis, they asked if I would be willing to provide a larger blood donation (a pint or so) as they had discovered I had suitable blood characteristics to be used as a 'low' control. I wonder if this is due to my early medical history, and would be interested to know if anyone else with a history of rhesus disease has unusual immunoglobin levels.