Hubby started having shortness of breath on Friday. He also ran fevers on Friday, Saturday and Sunday night.
The highest fever was around 101. Monday after lunch I took him to the ER. We had assumed the shortness of breath (a new symptom for him) and fevers were from his pulsing flagyl on Friday and Saturday -- only takes that 2 days per week right now.
Hubby has double pneumonia -- not sure of the cause yet.
He took his first helicopter ride today -- not the way he planned to celebrate our 20th wedding anniversary. He was airlifted from Martinsville Hospital ICU to Roanoke Memorial Hospital ICU.
His pulse ox dropped to 50 suddenly this afternoon -- I had gone to the drug store to refill his malarone which the hospital does not stock. Then later he went into afib for several hours with a heart rate of 169.
No cause has been found for the pneumonia as yet. I am so not looking forward to the infectious disease consult tomorrow.
Plan is to start Steve on high dose steroids tonight which is very worrisome, but so far they haven't had to put him on a ventilator -- just using a bipap machine.
Please add Steve to your prayer lists.
I am staying in a hotel tonight to get some rest to be fresh to deal with the docs tomorrow who are concerned about his "chronic antibiotic use".
Not sure when I will get a chance to update this but will try to add any major news.
Bea Seibert
[ 09-18-2012, 11:02 AM: Message edited by: seibertneurolyme ]
Posted by rera2528 (Member # 29886) on :
Thinking of you. Wishing you strength, and healing for your husband.
Posted by jackie51 (Member # 14233) on :
Ditto what rera said. Stay strong and hopeful.
Posted by Ellen101 (Member # 35432) on :
So sorry to hear this! Hope he is ok. Thank you for sharing an important reminder. We are all quick to assume we are experiencing a herx when in reality it could be a side effect of the medication or in your husbands case a different cause all together.
Posted by Pony (Member # 32559) on :
quote:Originally posted by Ellen101: So sorry to hear this! Hope he is ok. Thank you for sharing an important reminder. We are all quick to assume we are experiencing a herx when in reality it could be a side effect of the medication or in your husbands case a different cause all together.
This is so true... I think a lot of people attribute everything to a herx because they so desperately want to have something work (I know I'm guilty of this). It's a good reminder though to keep an open mind about what is really going on in your body, instead of locking in on one thing.
Of course our thoughts and prayers are with you and your husband Posted by Sammi (Member # 110) on :
Bea, you and Steve are definitely in my prayers. I hope the consult with the doctor goes well even though he is an ID doctor.
Happy Anniversary to you both! I am sorry you are unable to celebrate it today, but I hope you can soon.
Please update us when you can.
Posted by PatriotM (Member # 38493) on :
Bea,
I'm praying for Steve and you, and I hope he gets well soon.
Your point about everything not being a herx is a very good one. I can't honestly say that I know how to determine whether something is a herx; a 'normal' fluctuation of Lyme symptoms; or something else. I guess that's one of the hidden dangers of Lyme - that we ignore a new symptom that is really something completely separate from Lyme.
In addition, I share the Doctors concern about the "chronic use" of antibiotics, especially when most people don't seem to be getting cured by them. Unfortunately, I don't have the answers - just a lot of questions.
Posted by randibear (Member # 11290) on :
prayers to you and Steve both
Posted by NEMOM (Member # 31370) on :
Sending prayers your way.
Posted by lpkayak (Member # 5230) on :
yes-very good advice. i surehope you figure it out soon.
Posted by lpkayak (Member # 5230) on :
yes-very good advice. i surehope you figure it out soon.
Posted by GiGi (Member # 259) on :
Wishing both of you well.
Posted by Lymetoo (Member # 743) on :
Hugs and love to both of you. Will be praying .. esp for that "conversation" with ignorant ID ducks.
Posted by Dekrator48 (Member # 18239) on :
Praying for you and your husband!!!!
Big Hugs!!!
Posted by Catgirl (Member # 31149) on :
OMG! Bea, hang in there. I hope your hubby feels better soon. I hope his lyme doc is monitoring him.
Posted by baileypup (Member # 22824) on :
prayers sent your way.....
Posted by soccermama (Member # 35101) on :
Bea, courage and strength be with both of you. May God's peace envelop you.
I am asking God to restore your husband's health and return to you all the time that has been stolen.
Keep us updated. Hopefully, that which appears to be awful will turn into a blessed turn of events.
Posted by BoxerMom (Member # 25251) on :
I've been thinking about the two of you. This is not the update I'd been hoping for.
So sorry about this latest crisis. Much love to you both.
Posted by Haley (Member # 22008) on :
Bea - I hope things are taking a turn for the better. God will not give us more than we can handle.
Praying for you.
Posted by dal123 (Member # 6313) on :
prayers for you all!!
Posted by LymeGoAway (Member # 25041) on :
You and Steve are on my prayer list. Hope he's feeling better soon!
Posted by gagamooppop (Member # 34314) on :
Prayers and thoughts bea...
Posted by seibertneurolyme (Member # 6416) on :
Update #1: Thursday night.
Not much real news to report. Hubby seems to be somewhat stable but now the infectious disease docs and pulmonary docs are in a quandry as to how to proceed.
Off the bipap and on regular oxygen hubby's pulse ox drops into the 70's within 3 - 5 minutes. So far everything tested has been negative -- influenza A & B, mycoplasma pneumonia, MRSA.
Infectious disease docs of course say that the 2 months of IV rocephin hubby had back in 2003 cured his lyme (he had been undiagnosed for about 2 1/2 years prior to that). And they even went so far as to say he had never had babesia to begin with. Standard IDSA speak -- they want to discontinue all antibiotics and anti malarials. And we also got the lecture on long term steroid use -- hubby has been on 5 mg of cortef for about 8 years now.
But his immune subclasses -- IgG, IgM and IgA are all normal which does not indicate immune compromise from "chronic steroid use".
The pulmonary docs are tapering his dose of steroids -- solumedrol. We are actually hoping they do a bronchoscopy tomorrow. Since hubby is not coughing there are no secretions to try to culture.
Hubby's bloodwork is very slightly better -- WBC fell from a high of 10.0 to 7.9 overnight. RBC has increased from a low of 3.95 to 4.33 Platelets have improved as well from 141 to 200.
And after his recent hemolysis events his RDW is the best it has been in a couple of years actually at 12.9 Maybe he has killed off enough red blood cells now that everything has come out of hiding and after this crisis he can just move forward.
Personally hubby and I will be very surprised if the docs ever pinpoint a cause for his respiratory distress and pneumonia. We are just hoping that something eventually works and he can pull out of this.
I heard the pulmonary doc telling one of the residents or interns that tickborne diseases can cause ARDS (acute respiratory distress syndrome) so maybe they are at least keeping an open mind.
Hubby and I are not sure yet if his antibiotics and antimalarials have actually been discontinued -- the nurses were in report when I left for the evening and they were waiting on orders after the specialists came up with a plan.
If they do stop the malarone and lariam I would expect hubby's neuro symptoms to start getting worse within 3 - 5 days or most definitely within a week or two.
The pulmonary doc was upfront and told us that at this point he could not say if things would continue to worsen or if they would get better or how soon we could expect a change. I have the feeling this is going to be a long seige.
I came home to Martinsville to get some more medical record copies that we want to go in Steve's files.
The hospital did contact his PCP and his LLMD but they already had a closed mind in regard to tickborne illnesses before seeing any of those medical records. I don't think our efforts to educate the docs will amount to anything unless somehow hubby lucks out and tests positive to something tickborne on whatever labs they order.
Thanks so much for all the positive thoughts. They do help. Hubby is hanging in mentally ok so far but physically he is just worn out. He is 57 so not as young as he would like and his physical reserves have really taken a beating so far this year.
Bea Seibert
We do still have the 2 dog ticks from hubby's tick bites this spring and will be mailing them to Clongen lab to be tested. The lab has some research money and will test the ticks for free. We also hope we can talk the hospital docs into sending some blood to Clongen to have another blood smear done on hubby. But that will have to wait til Monday as it can't be mailed on a Friday.
Posted by 2young2dieMom (Member # 25434) on :
Your husband is lucky to have such a dedicated advocate. Stay positive.
Posted by Carol in PA (Member # 5338) on :
Bea, you said -- If they do stop the malarone and lariam I would expect hubby's neuro symptoms to start getting worse within 3 - 5 days or most definitely within a week or two.
Could you write up something for the docs regarding this, what you have observed in the past when he stopped these meds. By stating what has happened before, this is one way you can �predict� what may happen this time.
When the docs see a list of symptoms that have returned in the past, they may be more inclined to watch for them now, if only to �prove the wife wrong.� Hah.
Is there any chance that the Respiratory Therapy department would be able to do �salt ion therapy,� as is done in salt caves, for respiratory illnesses. I am thinking of a salt inhaler, which is a tube with dry salt crystals.
When you inhale, the air passes over the salt and picks up salt ions (atoms). When this is breathed deep into the lungs, the salt kills bacteria and viruses. Or you could buy a salt pipe for him.
Prayers and good thoughts .God bless.
Posted by philly78 (Member # 31069) on :
You and Steve will be in my prayers. Stay strong!
Posted by Sammi (Member # 110) on :
Bea, thanks for the update.
It is so frustrating how doctors ignore these very serious diseases. Doesn't Steve's Lyme doctor have a say on what meds he continues on? He does not need to backslide with everything else that is going on.
Prayers continue for you both.
Posted by beths (Member # 18864) on :
So sorry you are going thru all this.
Sending prayers
Posted by glm1111 (Member # 16556) on :
Bea,
Really sorry you and hubby are going through this crisis. I used to have severe asthma and several bouts of pneumonia through the yrs.
I also went into acute respitory distress and almost died twice about 12 yrs ago. ALL of my respitory problems vanished when I treated for parasites.
I am sure I was infected with lungworms. Don't know how receptive to using antiparasitics on Steve these docs would be, but maybe worth a try mentioning it.
Gael
Posted by Lymetoo (Member # 743) on :
Hang in there, you two. Love and hugs!
Posted by Dekrator48 (Member # 18239) on :
Bea,
You do such a great job coordinating and advocating for your hubby's care.
You are a real blessing.
Praying fervently for you, for your hubby's recovery, and for real enlightenment for the Dr's at the hospital.
Big hugs!!!
Posted by Andie333 (Member # 7370) on :
Bea, thanks for keeping us posted about Steve.
I think about him and you so often and will definitely keep you both in my prayers.
Andie
Posted by hereigoagain (Member # 17663) on :
I will also keep you both in my prayers - I hope the good you've done for so many others comes back to you tenfold and that Steve has a complete and speedy recovery soon.
Posted by seibertneurolyme (Member # 6416) on :
Thanks so much for all the positive thoughts.
Carol -- an interesting idea and something I need to check into.
Gael -- hubby has done ivermectin for several months and no the docs would most definitely not be open minded enough to consider antiparasite meds.
Sammi -- no hubby's lyme doc has no say in anything. Once you go into a hospital you are at the mercy of whatever docs you get assigned to. And they get really bent out of shape if you request another consult. I did that once in Kansas City requesting a 2nd neurologist.
Hubby's LLMD did send records as requested, but for the most part what few positive tests he has are from years ago and much of his treatment is based on clinical diagnoses. I just keep hoping something will show up on some test so his LLMD will not get in trouble. His doc is in NC and the hospital is in VA so they may not bother going after the doc.
Update #2 -- Very little change overnight. WBC went back up to 10.5 but the pulmonary doc says that can be caused by the steroids they have him on. I had never heard that explanation before and am not sure I believe it.
They adjusted the parameters on the bi-pap machine and feel hubby is doing slightly better with his breathing. They switched the cardaziem drip to oral and his pulse rate is staying in the 80's and no more irregular rhythm problems.
But on the negative side -- they did stop all antibiotics and antimalarial drugs some time during the night.
Hubby did have one of his seizure like spells this afternoon -- I have been surprised that his neuro symptoms have not been worse up to this point. The CCU nurse thought he was having a focal seizure and they gave him 2 mg of IV ativan.
I explained to both pulmonology and infectious disease docs that the babesia symptoms we would expect to see return are sweats, dry heaves, tremors, myoclonic jerks, seizure-like spells and headaches.
I actually like the pulmonologist. He changed his mind and cancelled the bronchoscopy. I heard him tell the students that he was 95% sure that hubby would end up on a ventilator if they had to sedate him for the bronchoscopy. But that was before the seizure-like spell and they had no evidence of just how high a tolerance hubby has for sedating drugs. Most of them actually hype him up. The last time he did an endoscopy a few years ago if I remember correctly he was awake because none of the 2 or 3 things they used actually knocked him out.
The plan right now is to just wait and see. A few more send out tests have been ordered, but they just don't know what to test for to get to the cause of the pneumonia.
I think the plan is to either reduce or stop the steroids tomorrow, but I guess that will depend on how things go tonight.
I think it may be a long weekend.
Hubby's RBC did drop again over night -- he and I think it was because they gave him one dose of IV doxy yesterday (100 mg).
The 3 meds I think would definitely cause some sort of herx reaction are IV doxy, IV flagyl and oral rifampin (he has never had that IV). I really don't know why those are such problem meds -- hubby had taken them all orally with no problems in the past, but IV doxy and IV flagyl both seem 10 times stronger than the orals every time he has tried them in the last few years.
I may not post again for a few days as I won;t have access to any of his labs until Monday as medical records is closed on the weekends.
Hubby was very disappointed that the bronchoscopy was cancelled. He thought they might have actually been able to pinpoint some infection from that.
That's about it for now.
Bea Seibert
Posted by BoxerMom (Member # 25251) on :
Love and light and positive thoughts to you both.
Do check in with us when you can. We're all concerned.
Big hugs, BoxerMom
Posted by Sammi (Member # 110) on :
Bea, I am glad there have been a couple of improvements.
I don't understand why they are taking Steve off of his regular meds. How frustrating, especially when you know all to well what the consequences will be. It is terrible that his Lyme doctor has no say in his treatment.
Prayers continue.
Posted by poppy (Member # 5355) on :
I wonder if it is ever useful and maybe even counterproductive to mention tickborne diseases to uninformed people in hospitals. What will they do with a lyme doc records anyway, except question the diagnosis and remove the meds. And maybe cause trouble for the doc.
That being the case, would it not be better just to go with the symptoms that brought a person to the hospital and let them deal with that, if they can.
Posted by TerryK (Member # 8552) on :
Bea and Steve - prayers and healing thoughts sent your way.
So they have determined that he doesn't have mycoplasma pneumonia?
bea wrote: Very little change overnight. WBC went back up to 10.5 but the pulmonary doc says that can be caused by the steroids they have him on. I had never heard that explanation before and am not sure I believe it.
I did a little research on this because I know it's hard to do while you are at the hospital.
Apparently ^WBC is a known side effect. Doesn't mean it is a useful increase unfortunately.
Corticosteroids also affect circulating white cells. Glucocorticoid treatment results in increased polymorphonuclear leukocytes in blood as a result of increased rate of entrance from marrow and a decreased rate of removal from the vascular compartment. In contrast, the lymphocytes, eosinophils, monocytes, and basophils decrease in number after administration of glucocorticoids. A single dose of cortisol results in a 70% decrease in lymphocytes and a 90% decrease in monocytes, occurring 4 to 6 h after treatment and persisting for about 24 h. Cell numbers then rise 24 to 72 h after treatment.66
Posted by Jane2904 (Member # 15917) on :
Hugs and Prayers for both of you. Hope things turn around fast.
Posted by seibertneurolyme (Member # 6416) on :
Terri -- Thanks so much for that info.
Poppy -- In a non crisis situation your approach might be ok. But in Steve's particular situation he was already on 2 antibiotics which are commonly used to treat pneumonia -- factive and zithromax plus he was on an antiviral (amantadine). They need to know what meds he has taken so they know what else might work to treat his pneumonia.
Pnumonia can be viral, bacterial or fungal or it can be caused by inhaling toxic substances and there may even be a couple of other potential causes.
But just as importantly various tickborne diseases can cause ARDS (acute respiratory distress syndrome) although it is pretty rare but Steve has had 2 dog tick bites this year. One near the end of March while off antibiotics and the 2nd on May 29th.
We are sending those 2 ticks to Clongen lab on Monday to be tested. My job Monday is to convince the docs to send a tube of blood to Clongen as well for a blood smear. We have signed orders from his LLMD and the test kit and had already made plans to do the test at his next blood draw.
They switched Steve's breathing machine from a bipap to a machine called an aquanox (not sure of spelling). Trying to maintain his pulse ox at 90% or above. Eating and talking both increase respirations from the mid 20's to the 40's up to 50 which leads to hyperventilation. And his pulse ox very quickly drops to the low 80's.
The electricity at home went off overnight and our phone beeped at me and woke me up so I called the hospital at 2:30 a.m. Learned that Steve had an incident overnight. He woke up nauseated and somehow knocked out the nasal canula and was off oxygen for a few minutes -- his pulse ox dropped to 69 and it took about 20 minutes to get it back up.
The plan had been to let him sit up in a chair for a few minutes this morning (Sunday) but not sure if they will still do that.
Had no communication with his docs at all yesterday, but have been told that his breathing was very slightly improved.
As hard as it was for Steve to get a diagnosis of tickborne diseases we decided a long time ago that we would share his story with any docs and nurses we encountered along the way. Besides, Steve was getting tired of being told his tremors were from anxiety and depression and that he had a somatization disorder causing his seizure-like spells etc etc. We would a whole lot rather argue over the facts than whether or not he has some real or imagined psychological illness.
Headaches and nausea seem to be getting worse off meds. Steve did have one very mild episode of tremors yesterday and I was able to convince them to give him some phenergan rather than extra ativan to calm down the symptoms. Luckily it worked.
Paying bills and getting caught up on paperwork tonight. Tomorrow I will be making copies of the medical records that we want included in his file. Whether or not they believe the tests at least we will have done everything we can to force them to consider tickborne illnesses as one potential cause of his pneumonia.
Bea Seibert
Posted by Sammi (Member # 110) on :
Bea, thanks for updating us.
I am glad you will have the ticks tested, even though it may not be 100% reliable. I hope they were not infected, you are both dealing with so much already.
I agree that doctors need to know what all people have. Whether or not they choose to believe it is their issue. Maybe once they start hearing it from enough people, they will.
Do you think the increase in his headaches and nausea are from Babs?
Hang in there okay?
Posted by Messa (Member # 38065) on :
I'm new here. I'm praying for you and your hubby! I am so sorry. Lord God wrap Steve in your loving healing arms. In Jesus' name amen!
Posted by derk diggler (Member # 31903) on :
im not much of a veteran here either, but my whole hearted prayers go out to your husband, in jesus name amen
Posted by poppy (Member # 5355) on :
Yes, that sounds right for his situation, Bea, re telling the docs about his meds. I guess I was just going by an emergency room experience of my own in the past.
A second ER visit more recently revealed that a doc in a state that officially has no lyme actually had heard of babesiosis. Surprised the heck out of me. Probably was not from personal experience in treating anyone, just from reading journals or whatever.
Posted by seibertneurolyme (Member # 6416) on :
Update #4
Carol -- Actually the respiratory people were thinking along your lines. They tried 2 isotonic saline breathing treatments on Steve -- basically saline breathed in thru a nebulizer. Unfortunately they did not make him cough.
The pulmonary doc was just in -- as he said he would be looking for zebras. They have ruled out several more things.
The few things tick related were all send out tests and are not back yet.
Legionaires disease ruled out. Also cryptosporidium and strep. No response to steroids more or less rules out fungal things -- steroids would have made fungus multiply and Steve would have gotten sicker. Also steroids should have improved things if the response was to an allergen and mast cells had been activated.
Steve's WBC continues to climb but no fevers fortunately I guess. Went from 10.5 to 20.0 yesterday and 29.5 today. Docs can't say how much of that increase is due to the steroids.
Surprisingly Steve's RBC has gradually risen to 4.56 from a low of 3.85 a few days ago. He obviously had some sort of hemolysis event which either triggered or exacerbated his lung condition.
His breathing is stable, but still very serious. I haven't asked too many questions but I know the nurses mentioned turning his oxygen down to 80% from a higher number. The pulmonologist told us that anesthesia would be by later today and that they would try to talk Steve out of doing the bronchoscopy as they would be scared to death.
The neurological issues continue. He has had at least one episode of tremors or seizure like spells daily. The neurologist was actually convinced that the lung condition has either lowered the seizure threshold or he does in fact still have a brain infection.
Several of these events happened at night, but from the nurses descriptions and Steve's comments they were very mild compared to what he has been dealing with repeatedly over the years.
One of the nurses helped cut thru the red tape and we will get the blood draw done today to send to Clongen lab to do a blood slide as Steve has had done in the past. He has done either 5 or 6 of those with Clongen and all but one found various unusual things -- so we are pretty confident that that will be helpful. They will have to follow up on any results even if they are skeptical.
We were both impressed with the neurologist and actually the 2nd infectious disease doc was a little more friendly -- not real sure what her opinion is but at least Steve did not have to take more verbal abuse.
Steve commented this morning that we have been all over the country looking for answers and help and it would really be ironic if this hospital team right in our back yard (60 miles from home) can help.
Back in 2007 when he was so sick it was either this hospital or the other Roanoke hospital that was also bought out by Carilion who refused to accept a transfer and said Steve's babesia could be treated in Martinsville. The I.D. doc at the time would not even schedule an office appointment.
The pulmonary doc thinks this is the best window of opportunity to identify the pathogen since Steve is off antibiotics and that would help to culture anything.
Steve's cardiac function is stable on oral cardiazem and metoprolol so that is good. They have not called in a cardiologist since the a-fibrillization is under control.
I did write a polite letter to be included in his medical file saying that we had been informed by all previous doctors of the dangers of long term or chronic antibiotic use and that the primary issue was the lung condition. I emphasized that we believed in the IDSA viewpoint regarding chronic lyme, but were open to alternative diagnoses.
Write or wrong we are providing the docs an open book in regard to past tests and medical records. That is the approach we started out with years ago when we weren't even aware of the controversy and politics and it is too late to change course now.
Maybe the docs will keep an open mind and learn something. When this is all over and done with Steve would not hesitate to see the pulmonologist or neurologist on an out patient basis for follow up care. I.D. is still a big question mark -- but they are not really running the show. The docs and nurses overall have been some of the best we have encountered in numerous hospitals across the country.
That's about all I can think of for now.
Bea Seibert
Posted by Carol in PA (Member # 5338) on :
From what I've read, I think that breathing in air with molecules of dry salt is different from what your husband got from Respiratory Therapy.
Using a salt lamp would provide negative salt ions around the lamp...you could put it next to your reading chair, or the bed. Good prices at Amazon and at eBay.
A salt pipe is portable.
I'm sure they're feeding him, but could he get some homemade chicken soup?
Editing to add, I just read your other post that Steve is scheduled for a bronchoscopy tomorrow morning. I am praying for him.
[ 09-18-2012, 05:01 PM: Message edited by: Carol in PA ]
Posted by sammy (Member # 13952) on :
Thank you for the update Bea. I've been praying for you and Steve.
You have been such an inspiration and encouragement to me. Thank you for all that you do, for sharing Steve's story, for helping others. You've been a help and a blessing to me.
Hugs Bea, hang in there.
Posted by Rumigirl (Member # 15091) on :
Yes, Bea, I have been following your updates. Love and prayers to both of you. YOu are both so courageous in the face of tremendous odds.
I hope that Clongen, or any other tests, can provide some light on the cause of the pneumonia.
I know that this is really serious, and you can't exactly free-lance when he is in the hospital and on ventilation to boot, but one thing I've done to clear horrific asthmatic bronchitis, when nothing else was working, was:
using a nebulizer with Argentyne 23 (colloidal silver @ 23 parts per million) in a little saline with drops of DMSO to get it deep into the tissues. It worked miraculously. Of course, it is probably a no-go in your situation in the hospital! But if there were a way to sneak it in . . .
In any case, I'm sending lots of love and prayers to both of you.
![[group hug]](graemlins/grouphug.gif)