A Horrible Wisherwasher Experience

[Parisa]

I just brought my husband back from four days in the hospital.  What an experience! I can only hope we don't have to repeat it.  Because of his dermatomyositis/Lyme with interstitial lung diagnosis, we had a whole crew of doctors in charge of different parts of his body/diagnosis.  Of course, no one doctor really seemed in charge and none of them really seemed to take the time to understand his complex situation.

Even though he has a positive CDC Western Blot for Lyme disease every single one of those doctors just rolled their eyes and was very happy to discount it.  Not one of them asked to see his lab work.  Not one of them looked at him with the eyes of a diagnostician trying to figure out whether or not it could possibly be true.  Lyme disease doesn't exist, because these doctors refuse to even consider diagnosing it.  Because of the Lyme diagnosis an Infectious Disease Doctor was brought in.  He quickly pooh-poohed the possibility of Lyme and decided that my husband must have tuberculosis due to the chest x-rays which are messed up with the interstitial lung disease.  So, my husband spent three days in isolation trying to cough up sputum so they could rule out the tuberculosis. 

The sudden hemolysis (break down of red blood cells) which was the reason he was admitted and  required a blood transfusion was pushed to the side after a couple of days.  The doctors were happy to blame that on autoimmune processes and chronic illness.  Excuse me?  I could understand a slow lowering of red blood cells but a 35% reduction in red blood cells in a couple of days?  Autoimmune is so convenient – you don't have to find answers – just blame the immune system and up the prednisone.  And speaking of prednisone, because my husband was at 7 mg of prednisone (he's been working to get it down for over a year now) they had to jack up the prednisone  due to possible adrenal shock.  We agreed that in this emergency situation they could increase the prednisone so he wouldn't go into shock.  Well they pumped him up to 120 mgs a day.  Once we found that out, every day we insisted that they drop it because the original reason for the prednisone was for shock not for treating his underlying disease.  I had to be very insistent with the doctors that we were trying other avenues and prednisone was not going to be the magic bullet for us.  He was released at 40 mg and now that he's receiving it in pill form it's back under our control and we're hoping to drop quickly to 10 mg in the next couple of days.

I'm thankful that the doctors were able to stabilize my husband so he could come home but other than that it's scary how much control you lose when you're in the hospital.  You are at the mercy of the doctors at the hospital not your regular attending physicians.  Lesson learned – get stabilized and get out!

[Pip]

Oh, sweetie, these situations have to stop.  Thank God your husband is OK.

Hugs,

Pip

[casey]

Oh Parisa, This is so like them all in my opinion.! I have a son showing lupus and i have MCTD and my mom has RA and lupus.

I took my son , then 12 to a well known childrens hospital here in Canada and i couldnt believe how they responded. First off , they like to just cut it off to the fact that “it is genetic” and “runs in the family” and go no further till we need the DMARDS.

When i suggested mycoplasma infection lke u did with lyme, and i explained about all infections ,celiac and so on ,they asked us to wait for an hour and sent down the head rheumy who shut the door after she walked in and said to me ” i see you know alot about rheumatology”.

She discounted the “infections and said they dont treat it. She said “they all have chronic infections” I told her that if they treated the chronic infection , they might not have the disease. She didnt want to hear of it and that they had 400 lupus children including neonatal lupus babies. they have doctors for each area of the body but not one focuses on the main reason the disease exists in the first place.

I feel your frustration and will never get it but at least we , through this wonderful board, Dr. Brown , know that it is an infection and we know regardless of the hospital stays and experiences, that we have AP and will get better somehow.

So , Blessings to you and your husband and may he find the strength to throw his good health back at them all someday!

Casey

[Parisa]

When the Infectious Disease Doctor was looking at some old blood work, I pointed to the high Parvovirus titre.  He response was,  I don't know why they do some of these tests.  There's no treatment anyway!  I told him well, some doctors actually treat their patients with IVIG.  I know that there are other people with other viral infections that are treated with antivirals.  The idea that a guy who specializes in infections who doesn't want to know about them.  It's absolutely crazy!

[Maz]

[user=13]Parisa[/user] wrote:

The sudden hemolysis (break down of red blood cells) which was the reason he was admitted and  required a blood transfusion was pushed to the side after a couple of days.  The doctors were happy to blame that on autoimmune processes and chronic illness.  Excuse me?

 

Hi Parisa,

By “hemolysis” do you mean hemolytic anemia?

I was just checking around for articles on this and discovered that vets already recognize hemolytic anemia as being a possible secondary complication of Lyme in canines. 

http://ecommons.library.cornell.edu/bitstream/1813/2746/1/2003+Good.pdf

Crazy to think that vets are way ahead of our own human physicians with understanding Lyme. I actually got a Lyme pamphlet from our vet that clearly stated that complications arising from late stage Lyme may include so-called “autoimmune” states.  Try and tell a non-LLMD that and you'd get laughed out of their office.

There are also a numer of 'human' articles about Lyme and hemolytic anemia…here's just one I found about a woman who received a kidney transplant and was later found to have been infected with babesia microti from the transplanted tissue:

http://www.transplantjournal.com/pt/re/transplantation/fulltext.00007890-200007150-00039.htm

So sorry to hear your hubby has been so ill with this and that you've both had such a worrying time. I really hope he's feeling much better now he's home and over the worst. I really just wanted to post with some support – you're not nuts – this condition is documented as occuring with Lyme/coinfections and the hospital docs will one day be eating their words.

Peace, Maz 

[Parisa]

Hi Maz,

 

Thanks for your support.  I'll look into the articles you sent.  I've got alot of research to do.

By hemolysis I do mean hemolytic anemia.  And yes, we'll be following up with our LLMD.  My husband has had some treatment for babesiosis as the doctor felt pretty strongly that he has it despite the negative test.  As you probably know, there are about 40 subtypes and the tests only catch a couple of them.  I didn't waste my breath with the Infectious Disease Doctor about that.  As far as figuring out the trigger, everything is complicated by the fact that he started IV Rocephin two weeks before this and had two IVIG infusions about 5 days before.  IVIG in rare cases can cause hemolysis but his labs from the week before the IVIG showed his RBC already dropping.  So, I'm leaning toward the IVIG not causing it.  I'm wondering if the Rocephin started clearing the Lyme leaving room for the Babesia to rear its head.  I just hope we can figure it out as we never want to go through that again.

[Maz]

Sounds like you're right on target with this, Parisa – your hubby is one 'rich' man with you by his side as his health advocate. Keep forging forward with this and you'll get to the infectious root of all this.

Also meant to add before that a few years ago, our yellow labrador wound up with sudden “autoimmune” hemolytic anemia – her symptoms were extreme lethargy, weakness, no appetite and red wine-colored urine. Its onset was very sudden and progression swift…but, the vet was right on it and, though he couldn't say for certain what caused it, he said his primary suspicions were vaccines and/or “infectious causes.” Rather than wait to figure out what “infectious causes”, he immediately treated her with a short course of pred to slow the attack and a heavy course of antibiotics, as an additional therapeutic probe. She made a miracle recovery and was back to her old self within two weeks and has had no recurrance since. 

Thank goodness you have an LLMD to follow this through for you guys.

Sending lots of healing blessings your hubby's way and do hope you're able to take a breather to relax and wind down from this worrying time.

Peace, Maz

 

 

 

[A Friend]

Parisa,

Thank you for letting us know about your husband.  Scary stuff going on there.  Hope by now he is feeling much better — guess maybe with that much pred in him, he may not be feeling anything for a while. 

You've got a lot figured out already.  That's good.  As “captain of the ship” (or, rather, co-captain):roll-laugh: you need to have this figured out.  (Don't get sea sick looking at this emoticon!)

Please give us an update soon, ok?

 

[Cubby]

Parisa:  Does your husband have Scleroderma?   I'm new here, so I am just trying to figure out the ropes.

[Parisa]

[user=117]Cubby[/user] wrote:

Parisa:  Does your husband have Scleroderma?   I'm new here, so I am just trying to figure out the ropes.

At one point they thought he might but he seems to be fully in the dermatomyositis category now.

[Parisa]

To any newbies that have read this post.  Please, my husband's experience is not typical of what most APers go through. 

[Author]

Posts