Do You Have Problems Keeping Your Body Well When Doing Ivig Treatments?

[looneymom]

Tyler came down with strep throat again. He had just been given a penicillin shot on Sunday and woke up running a fever 99.4 Monday morning. He complained that his throat hurt. So I checked the back of his throat and it was swollen with white puffy patches. I would normally have waited 3 days before taking him in to the doctor but took him yesterday afternoon. He tested positivie. He has not been out of the house. I knew strep could hide in the body, but I'm wondering how long it is going to take to get it out. I have called our cardiologist to let him know and I'm sure that he will respond. This is the first time for Tyler to get sick while taking the treatments. Is this normal? I thought IVIG would keep him healthier.

[arizona girl]

Rachel,

IVIG helps replace the immune system and modulate it. Even patients that have CVID do still get infections. The ivig helps reduce the number of infections it does not get rid of them completely. You will find these type of discussions on the cvid support group over on the "gentle strength" forums.

Over time the infection rate should improve. I had several more infections the first two years after starting. Prior to that I had a chronically elevated wbc often with elevated neutrophils. I did have an improvement in my rate of infections, after starting. Even though I never run robust fevers including with pertonitis after a colon rupture, i was running very low grade afternoon fevers prior to starting ivig.

In the last year I have not run those fevers and my wbc has been normal every time I thought I was coming down with something. As I said before the one exception to my ivig treatment was when I was on carimune. I got worse while on that and improved within six months of starting privigen. It did though take me six months to see any improvement once the switch was made.

IVIG as it is only IGG can not boost immunity to all types of infection, for example it does not stop yeast infections which are fungal. So it really depends on the antigen the body is fighting. It is known to help with most bacterial infections, which strep is.

Glad you called your doctor right away. Often antibiotics must be prescribed along with ivig. Another thought is perhaps Tyler has built up a resistance to the penicillin. I believe there are test out there that can check for antibiotic resistance and will point one to an antibiotic that will be more effective. It may be time to see if you doctor will prescribe a more board spectrum antibiotic. I like rocephine shots, as they have worked well for me and knocked down my infections and lowered my wbc quickly. Sometimes I did not know what the infection was, we assumed they were GI related due to my symptoms. With out getting an antibiotic on board though, my wbc would continue to rise.

Trying to avoid antibiotic resistance is one of the main reasons ivig is prescribed. You all are still really early in the game in treating this. Do you think he may have been exposed to the strep during his recent hospital infusion? Hospital infections are very common. My mother has had several that almost killed her. It looks like that is who I got my hypogamma from.

Hope this helped. Please let us know what your doctor says.

[DeGenesis]

Most strep is now resistant to penicillin, as arizona girl points out. I asume he is recieving penicillin G. There is evidence to show that penicillin and amoxicillin kill healthy bacteria in the oral cavity, and make you more suseptible to strep throat. Yes, good bacteria live in your mouth too.

A short course of a cephalosporin-class antibiotic is now preferred to treat strep throat.

There are also other beta-lactam antibiotics other than penicillin that may be more effective against group A strep infections. Piperacillin is a popular choice in hospitals. It has a very broad spectrum of action.

There are other classes of antibiotics that are effective against beta-lactam resistant group A strep, but most doctors will not use them outside of an inpatient setting, and only with proven resistance to other antibiotics.

How are Tyler's tonsils? Has a tonsilectomy been considered?

[looneymom]

Tyler still has his tonsils. However, the last time he had an outpatient procedure, his heart rate dropped down to 27. So I'm not sure that removing tonsils is an option at this point.

I am waiting to hear back from the doctor. I called the office this morning and did speak to his nurse. She is very good to get meesages through to him about Tyler. I look for him to add another antibiotic. Tyler has tried Bixan and caught strep throat while being on that one also. I would also like to see a wide spectrum antibiotic added.

Katy-- Does the hopital give the rocephine shots or do you go into your gp? Or can they be given along with the IVIG? I have hear of these shots before and I have wondered about the resistnce to pencillian. Tyler has been getting the Penicillian g shots every three weeks. He had his third one this last Sunday. Our cardiologist is most likely having to rethink Tyler's current treatment plan.

I have been reading that it may take several treatments before any improvement is seen. I do think we are on the right track with IVIG but I'm hoping that we do not see any reactions at all with this next round of IVIG. I did send our doctor the IVIG comparison chart and he did say he would look into this matter more. He is open-minded and does not want any reactions to happen after we get home.

[arizona girl]

Hi Rachel,

I'm assuming that when you asked katy about the rocephine shot you meant me. I have had my shots at both urgentcare and my primary care's office. It depended on whether the elevated wbc's came in high during office hours and if I could get in with my primary care in a timely manner. When I can't I go to a local urgent care, who knows my history and gives them to me. I believe infusion nurses or home health nurses can give them, if they have a script from your doctor and is ordered ahead of time.

The medication is a bit thick so the shots hurt a little, also depends on how good the shot giver is. I prefer the shot to weeks of the oral antibiotics. However when I have an infection I may require up to 3 shots fairly close together, usually within a ten day period. We monitor my wbc and stop when it returns to normal and symptoms are gone.

It really sounds like with the bixan not stopping the strep and now peni, your doctor should be getting that antibiotic resistant testing done, so he doesn't build up further resistance.

Glad to hear your doc is open minded and willing to make the necessary adjustments. This hasn't been an area of medicine the cardiologist are up on, as they stay in their lane. Now that many of these types of patients present with cardio symptoms first, I am glad to see some of the antibody/viral research now involving cardiologists like Raj at vanderbilt. Sounds like you are in good hands.

[looneymom]

I did have Katy on my mind because of her surgery is today. Hope she comes through it ok. Sorry for the confusion.

I did hear from our cardiologist. He wants us to go in and get a culture done. Depending on what type of strep it is, there is still a 50% chance that it will show up. Tyler's throat looks as bad today as it did yesterday. So I'm going to see if the doctor will do another rapid strep.

If strep is it, then we probably need to do a titer check since it has showed up 3 times in the last 6 months. I suspect it will be done at Tyler's next IVIG treatment. Since the strep did show up on the rapid test, he does want us to go ahead and do the antibiotics for right now. I'm just hoping it's not too late to show up on the culture. Well I'll post later if they do the rapid again. I've got to leave here soon for the appointment.

[looneymom]

The culture was done. Should know results by Friday at the earliest and Monday at the lastest. The doctor said it looked like strep in all of it's glory. Just hope the culture will come back positive and the stain can be identified. Tyler had already taken two antibiotic pills but this was noted on the culture.

[arizona girl]

Your poor guy! He sure is a trooper. I really hope this time next year or sooner, we see him in a much better place and much improved health wise. Let us know what happens.

I just talked to my neuro about trying to tweak my treatment plan to see if we can get anymore improvement. We are going to add some iv saline with my infusion to help with the headaches and post ivig flu. Fingers crossed it works and I recover more quickly from the infusion. He said there isn't much more we can do to suppress the autoimmune end of things. My only other options are the chemo level immune suppression drugs, which really are probably to strong for me to take with the hypogamma on board. Plus I can't even take methotrexate because it becomes toxic when you are MTHFR. He put me on cellcept before I knew I had hypogamma, and I got really sick.

We also discussed that this was why I did so good with the pheresis, as we were removing the antibodies from my blood. Which kept them from attacking me. I was doing that up to 3 times a week in the beginning, but then I got an infection and anemia. For me the ivig is easier to do then the pheresis, even though it was just as effective. However, he said the ivig doesn't stop the body from making the antibodies it just neutralizes them, or another word for it, modulates the immune system. Kind of like the clown in a bullring saying no over here not there. I also suspect that some of the small fiber autonomic nerve damage, may not be reversible. Some SFN can be reversed with treatment. I just have had it for far to long before it was diagnosed to believe it is totally reversible.

So, I guess no treatments knock things back to normal, as much as I wish they did. We know I still have the autoimmunity attacking me, because my recent thyroid antibodies while lower are still elevated and my lichen has yet to clear and I once again have yeast. I suppose that is better to deal with than tyler's strep and everything else he has going on.

I've had 3 appointments this week already, with two to go, and another two next week, then ivig again. I am so tired of my social life being found getting medical services. I'm sure tyler knows how that feels. I keep going though because I do think there is still room for some small improvement. I know at some point I will have to accept that this is good as it is going to get. Thanks all for letting me vent.

[looneymom]

Hi AG,

Hope you are feeling better this morning. I was wondering, what symptoms got better after the IVIG kicked in? I have not asked the doctor what I should be watching for. Tyler's worst symptoms are the headache. body pain, and tremors. I can't wait to hear the words " my headache is gone".

[arizona girl]

Hey Rachel,

Sorry for sounding like debby downer yesterday. I just wish there was a magic wand that poof could make it all go away. Tyler is young and they are making so much progress with the research, including stem cells which may even pose a cure. He has more time for them to figure it out. I'm already on the downer side of 50. I lost so much time with not being heard or diagnosed in a timely manner. The illness has caused huge losses in my life. The mthfr along with pcos caused infertility, so I have no children of my own. I do have many godkids and nieces and nephews who love me. So god does make a way. I need to remember that I have much to be grateful for, including my current medical team and a treatment plan that has stopped the progression and is keeping me stable.

I'm not sure if you're asking about post infusion symptoms or improvements of symptoms over the long term. I will answer both. Once we switched to privigen the improvement of the post infusion flu and headache was significant. I felt I got worse with each Carimune infusion. It has a lot of sucrose and I was already prediabetic because of the pcos, so it was just a bad drug for me.

Since switching I still get the headache and flu aches but they are much milder and some times don't clear until the 5 day window is over. I've been managing them with pain meds, diazepam, icepacks and rest. After talking with my doc yesterday, it is probably because I still have low blood volume from the nerve damage, and drinking fluids isn't enough to rehydrate me, I get rid of my fluids rapidly. Right now even with the mild post infusion symptoms, you'd have to fight me to take my ivig away.

The symptoms that have been improving with continued treatment, are my all over body pain. The peripheral neuropathy type,except I had it full body. I used to wake up digging my fingers into my hand, with a rigid body, biting my bottom lip. I still have pain, just rarely that type. My very low grade afternoon fevers, which also spike my bp/hr are now gone, along with that my wbc is no longer elevated chronically. Yesterday it felt like I was getting a sore throat and swollen glands. Today gone. So I appear to be fighting things off now, except of course for the yeast. My heart rate rarely goes above100 now. Though I start low on waking, so 96 bpm still feels like I'm exercising. My bp swings are closer together, though I still get my spikes. I was one of those that are hyperandrenergic with a surge in norepi on standing. I now get a burst of energy and can do more for about two weeks following infusion week, before I start slowing down again.

I never had tremors. My guess would be for Ty until the antibiotics along with the ivig really knock that strep out, he is going to continue to battle this. He may need the broad spectrum antibiotics for an extended time. Of course be on the watch out for cdiff, if they do that. A peny shot three weeks apart, seems to me an opportunity for him to build up a resistance to it. I also had trouble with the levequin/cipro class of antibiotics, as they can further nerve damage. I tolerate rocephine very well. My infections were cleared by days of iv antibiotics, granted around a small colon rupture, but also another four days a year later after an elective colon resection. The day of the surgery my wbc was way up again. Since then I get the rocephine shots if my wbc elevates. I have not had to have any of these type of treatments in over a year. So something is working. Not perfectly, but enough to have a better quality of life, even though I still have fatigue and aches and pains here and there. I'm pretty weak muscle wise and need to start rebuilding my strength with exercise and am going to start PT again.

[looneymom]

Thank you so much for responding. Our doctor is going to do a few things different pre and post treatment. He is hoping it will end any pre or post IVIG allergic reactions. Sounds like your doctor is doing the same. It really is exciting to hear that your pain and headache levels went way down. That's what my husband and I want for Tyler. However, this strep throat is not helping and making symptoms worse. Does your blood pressure still drop low with infections? Tyler's has been lower and I have had to increase his salt. I'm hoping the antibiotic will kick in and help this out. These infections play havic with his cardio and nervous system.

I do think that something is going to be done differently with the antibiotic. We are waiting on the results of the culture. I'm just hoping that strep is the only thing we are having to deal with right now.

Tyler is strong enought to transfer in and out of his wheelchair and he can do functional things with arms and hands. He folds laundry, puts clothing on hangers, types on computer, and loves to paint when he is feeling up to it. Every week, he does try to do an exercise that he would do at physical therapy that would not cause any issues. He tried arm raises the other day. The first three were fine but on the 4th one hard tremors started in his arms and hands and then spread all the way down to his feet. He shook pretty hard for about 20 minutes and then it gradually eased up. However, he never did get breaks from his tremors the rest of the day. Our doctor wants him to try this because it is the only way of figuring out it the tremors are getting less or if his body is responding to antibiotics and other treatment. Tyler really wants to get back to doing some exercise because he had lost 30lbs the first time around. He was very motivated and excited. Starting with a physical therapist is a good thing. If we can get the tremors to stop, our cardiologist is going to order home health care and they will send out a physical and occupational therapist.

How did you know when it was safe enough for you to go out and be in the public? Did your doctor figure that out with blood test? Our doctor does not want Tyler out since he seems to be catching strep on a regular basis right now. Tyler does not feel good enough to even want to take a short car ride just for a change of scenery.

[arizona girl]

Happy to help, but remember my diagnostics and presentation are different from ty's, though there are some similarities. I also do not have low bp, but the opposite. I'm not in a wheelchair. I was going very high on standing. I had catecholamine testing done supine then to standing and on standing my norepi went from 400's to 1100's. That is called a hyperandrenergic response and is compensatory. I did have some near syncopes with added stressors, which we now know was caused by my body responding to the high bp/hr. Syncopes force you down and the body can then re-regulate. They were pretty dramatic, but not frequent and had been happening since I was a child. I am grateful I don't have the low blood pressure. I think that low bp is much harder to work around then a hyper response. I feel for tyler if he has any of the symptoms I get when I'm going into syncope, they are awful. To have that every day, thats tough.

Have Tyler's Cats been checked yet? Has he had a skin biopsy to see if there is small fiber nerve damage yet? Also did he pass an emg which tests for large fiber damage (this one looks at your motor skills and strength)? A neuro is who looks into these.

I now know to use an increase in my pain levels, as a sign my body is fighting something, my spikes in bp/hr are also often associated with me fighting something. As you know with low immunity, you don't always run a robust fever with infection, because your body can't mount a proper defense.

With strep on board I imagine that alone is increasing his pain. Here is the thing about trying to exercise with an active infection, it depletes energy and therefore takes away from the bodies ability to fight the infection. Isn't that why they recommend rest and fluids when you have a bug! I think it is wise to go after first things first. That infection is first priority, mainly because infections that aren't bought under control can kill us and as you know do the things to ty's body that are happening - tremors, pain and headaches. I am going to start pt now because we have addressed some other things first. My last three attempts at PT were a fail and actually made me worse.

My pre ivig headaches were almost always associated with me not being able to move my gi track. The only real headaches I get now are just after my infusion and/or dry nasal passages.

As for going out in public. I never stopped. My infections were never upper respiratory, except for tonsilitis and a few ear infections. I'm guessing because my IGA was still normal. It was my igg and igm that were low. I was careful though when going to the hospital. I also never touched things and kept my hands off my face. I carry the alcohol wipes and am still careful about what I touch. Strep is a different bird though. If I were him I'd wear a mask for the airborn stuff. Doing the ivig in the hospital has it's risks too! The sooner he can get those in the home or at a nonhospital infusion center the better. Car rides are never fun when you have low bp. I still hate being a passenger and getting jostled around. It is better if I'm the driver.

I'm sad to hear that your doc is still fussing around with the carimune, trying to make easier to tolerate. That is exactly what happened with me and after four months we finally had to switch and only then did I start to improve. I lost four months messing around with it.

Did I cover everything! Look forward to seeing what the doctor says when the culture comes back.

[looneymom]

Tyler's strep culture was negative. It's hard for me to believe this may be all viral. He cannot tell any difference in his throat. I'm going to request a strep titer test. He had one done back in December. It will be interesting to see if the antibodies are lower or higher.

[DeGenesis]

Tyler's strep culture was negative. It's hard for me to believe this may be all viral. He cannot tell any difference in his throat. I'm going to request a strep titer test. He had one done back in December. It will be interesting to see if the antibodies are lower or higher.

http://chronicsorethroat.wordpress.com/

This blog is written by Hip from Pheonix Rising. It's about chronic sore throat and a myraid of other issues he and others have which he believes is caused by an enterovirus. Dr Chia, a CFS/ME researcher, found enteroviruses in something like 85% of CFS patients, but in a very low % of healthy controls. What's more, when Dr. Chia exposed mice to the bisopsies of enterovirus-infected CFS patients, most of the mice became infected. I believe the virus in question is coxackie B. Again, it's just one hypothesis, among hundreds, but it's worth some investigation IMO.

[looneymom]

Very interesting article. Thanks for posting.